Post Thirty Seven. The Invisible Ones.

My request for the band Suede – please help to make live music accessible for your disabled and/or chronically ill fans who live in permanent lockdown.

I have a request for the music industry. I would like bands to start live streaming at least one performance from each tour, as standard. Not just in times of Covid, but always.

I’m kicking off my campaign (if I can call it that – so far it’s just me screaming into the void) with the band Suede for no other reason than timing. They just happen to be the band taking up the most space in my head at the moment, because they’re who I’d next be seeing live, if I were able to.

I was a teenager in the 90’s and I was obsessed with Britpop, a British music and cultural movement that grew out of a desire to place the spotlight on British indie music over the American grunge scene. Looking back, I actually have some reservations about Britpop, not with the music, which at the time I felt had saved me from my tween self whose musical tastes were, questionable, but with the movement as a whole. I didn’t recognise it back then, but now I see the nationalistic overtones, the whole ‘Cool Britannia’ thing that was so embraced by Tony Blair and New Labour, which gives me the cringe, and the overwhelming whiteness and maleness of the scene, it doesn’t sit quite right with me anymore. So while the movement may have been, in Brett Anderson from Suede’s own words, “…a laddish, distasteful, misogynistic, nationalistic cartoon“, and I think we can agree it’s best left in the past, I am still very fond of a lot of the music from the time.

Despite my fondness for the music though, I rarely listen to it anymore, not unless I’m feeling particularly sentimental. The one exception is Suede. Suede I listen to not for the sake of nostalgia, but simply because they’re great. Their last three albums, since they reformed after splitting up, have been sensational, with their last album being, in my opinion, an absolute masterpiece. Unlike many bands who seem to get a bit lost the further away they get from their heyday, Suede, since their comeback, have been consistently strong, it could be said that they just get better with age.

My current top five albums in no particular order:

The Blue Hour, by Suede

Enter 4, by Hjaltalín

Team Dreams, by Sóley, Sin Fang & Örvar Smárason (their 2017 collaboration)

Island Intervals, by Death Vessel

Hvarf/Heim, by Sigur Rós (a compilation album)

Click on the album titles to listen to these on Spotify.

As a young teenager I’d heard of Suede, but it wasn’t until the release of their third album, Coming Up, that I really got into them, which happens to have been twenty five years ago this month, and I was sixteen years old. My friends and I had managed to obtain almost complete control over the jukebox in our high school canteen, and I still can’t listen to the song ‘Trash’ from Coming Up without flashbacks to our usual lunch table, next to the jukebox, obvs!

Despite Suede featuring heavily in the soundtrack of my teenage years, for some reason I never saw them live, and I have no idea why. I had pretty relaxed parents who were happy to let me go into Edinburgh or Glasgow, even on a school night, to go to gigs, usually at the Liquid Room or the Glasgow Barrowlands. My friends and I always got there early to be at the front of the queue to ensure we got a place right at the front by the barrier. I’ve held many a sweaty hand of various Britpop singers, and I almost always managed to get hold of one of the setlists that had been taped to the stage floor. I have so many wonderful memories of the gigs I went to in the 90’s, but none of Suede, and that’s something I really regret.

With that in mind, it perhaps wasn’t surprising that when Suede announced a tour to mark the 25th anniversary of the release of Coming Up, I excitedly booked a ticket. I’d finally get to see them live, and I’d get to relive the 90’s with the promise that they’d be performing Coming Up in full. There’s a bit of problem though… I have severe ME and I’m predominantly housebound.

So why did I do it? Because I’m addicted to my old life, the life I had before ME. The desire to do the things that make me happy never went away. All I could focus on was the idea of getting to see Suede perform the album that I first discovered them with, and my natural instincts kicked in.

I’m not completely detached from reality, I was fully aware that I may never get to use the ticket. When a situation like this arises though, I can’t help but make myself believe that a spontaneous and miraculous recovery isn’t completely out of the question, and I certainly can’t go if I don’t have a ticket. That’s how I manage to justify it.

But after the anticipation, buzz and excitement of securing a ticket, comes the depression and anxiety as I scold myself for being stupid enough to put myself through this again. Because I’ve done this before. It turns out that I have a pattern when it comes to this particular situation…

  • I see an announcement about a concert that I’d like to attend and…
  • I check when the tickets go on sale.
  • I check the dates of the concert to ensure I don’t have a hospital appointment that week.
  • I go to the venue website to check out access and look for the seating plan to find out where the wheelchair spaces are.
  • I look to see if I’ll be able to book a wheelchair space online but somewhat ironically accessible tickets are never available online (ahem, accessibly), so I email the venue to ask how I go about booking an accessible ticket and hope they reply before the tickets go on sale and sell out. *I can’t call them because speaking on the phone triggers my migraines and I already average eighteen migraine days per month.
  • I find out where the closest accessible parking to the venue is and check that I can use my Blue Badge there.
  • I find someone who can drive me and accompany me using the free companion ticket that tends to come with an accessible ticket.
  • I check the refund policy, because it’s not like I can sell a wheelchair space on Gumtree and there are always so few wheelchair spaces that I want to give someone else the chance to buy it if I can’t go.
  • If, by the time I have all the information I need (which can take a few days because this stuff is never made freely available on their website and emailing back and forth takes time) and the tickets haven’t already sold out (which has happened), I book my ticket(s).
  • I spend a long time hoping I can actually make it this time. Every time I don’t crash as badly as I think I will, or I don’t have a migraine when I usually would, I start to wonder if my ME is improving.
  • But inevitably I conclude that I won’t be able to go, so I contact the box office and either get a refund or lose the money.
  • My mental health will then suffer as my heart aches for everything I’m missing and I’ll feel increasingly resentful of all the people who have the privilege of being able to do the things they want to do.
  • I’ll tell myself to never do this again.
  • I’ll do it again, because life is just too tempting.

This pattern that I follow is driven by my longing to live my life as I did before ME, and even after seven years, letting go of that is not as easy as you might think. Saying that, if you found it difficult not being able to do the things you usually enjoy during lockdown, then you may well have an inkling of understanding. The longer it goes on doesn’t make it any easier by the way, well it hasn’t for me.

So this is exactly what I did when Suede announced their Coming Up anniversary tour. It was originally meant to be in October 2020 but Covid forced them to reschedule, which they did for April 2021, and then Covid forced another change of date, to November 2021, performing at The Usher Hall in Edinburgh on 3rd November.

I might have been the only person who was delighted by the repeated postponement of the tour, because the further away it was, the longer I would have for my miraculous recovery. Now it’s less than two months away, and I won’t be going. That’s pretty much a complete certainty.

The day of the concert will be difficult for me. I’ll have to avoid social media so I don’t see photos or mentions of the concert – deliberately isolating myself even further than I already am in order to shield myself. Then afterwards I’ll be too sad to listen to Suede for a while because it will remind me of missing the concert, and everything else that I’m missing because of this illness.

Online events don’t have to be just for lockdown.

However, there is something that Suede could do to save me, and others like me, from this cycle of emotional trauma. With every tour they go on, they could live stream one of their performances, for a fee, if they wish, I’d pay for a virtual ticket, to allow their housebound fans to participate in the live music experience.

If I knew from the beginning that attending the concert virtually was an option, it would save me from repeating my ridiculous pattern, the crushing disappointment that it always brings and the subsequent crash that my ME will suffer.

My hope is that the live stream would also be made available to tickets holders for a time after the initial event as well. This would allow those of us with energy impairments and/or fluctuating conditions time to watch it after the live stream, or in short chunks over a few days, if that’s what we need.

Importantly, I would also hope that when the band address the audience, they include those of us at home. This would give us a sense of belonging, allow us to feel included, part of the experience, and as valued as the audience that they see standing right in front of them.

Of course it won’t be the same as attending a concert in person, there’s no substitute for the energy or the atmosphere, but it’s the best doable solution that I can think of. It will go a little way at least in closing the gap between live music fans who are housebound due to disability and/or chronic illness, and the bands that they love.

What I’m proposing isn’t particularly radical, but it’s something that we all know can be done, lockdown taught us so. So now it’s just a matter of, do Suede and the music industry at large want to make their live shows accessible to housebound fans? Yes or no?

I’ve tried to make contact with Suede’s people in the hope they would offer to trial my idea on the upcoming tour, but they’re proving to be impossible to reach, or at least impossible to elicit a reply from. I tried Twitter and Facebook, and heard nothing. I emailed the manager of Suede’s fan club, The Insatiable Ones, and asked if they could help. They liked my idea and forwarded my email to the band’s management, but they didn’t respond.

I genuinely thought that my proposal might be something that Suede would consider. Last year, to compensate for the postponement of the tour, they regularly shared old live performances on YouTube. So they do seem to recognise the value of making their music accessible, but sadly it seems that this was only for the time when it primarily benefited fans who were temporarily stuck at home. When it would primarily benefit disabled fans who are permanently housebound, it seems it’s less of a priority.

“…people seem unable to acknowledge that everything they’ve found hardest about the last year is just a way of life for many of us. And now they’re “back to normal” and it feels like we’re forgotten and left behind all over again. It’s hard.

@lornamcfindy, Twitter

At the start of lockdown it was heartwarming to see how communities rallied to support their vulnerable neighbours, and how society opened up and offered online opportunities that disabled people have dreamt of for years. I’d hoped that this new more accessible society would stick around, but now that non-disabled people have decided it’s time for life to go back to ‘normal’, there’s been a noticeable shift in attitudes towards vulnerable/disabled people. This is something that I’m finding incredibly difficult to witness, traumatic even, to see the world opening back up for most people, while closing down again for disabled people. Knowing that access to such events was always possible, but that it was only done (mainly) for the benefit of non-disabled people, for the short time they needed it, really stings.

My guess as to why this is happening is that disabled people just aren’t high on non-disabled people’s radars, if at all. Unless someone is disabled themselves, or they care for a disabled family member, or they work for a disability organisation/charity, generally speaking, people don’t tend to consider disabled people.

The last concert I went to was in Reykjavík, Iceland, in December 2017. As I was planning the trip I asked in an Iceland travel based Facebook group if anyone could tell me the rough cost of a taxi from the bus terminal to the street where my Airbnb was. I made it clear that I’d been to Reykjavík many times before and I knew it was a short distance. These are the replies I got…

If the weather is good and you don’t have a lot of luggage walking is easy.

I would walk both trips with ‘the long way around’…Plenty to see and feel if eyes and heart are open.

You can walk there. It’s about ten minutes.

No one considered the fact that I was asking this question for a reason. No one considered that I would need to take a taxi (for what I acknowledged to be a short distance because I’d been there before) because I am disabled. They all assumed that walking was an option, even when I’d given them a pretty big hint that it wasn’t. For the full story of this little holiday read Post Twenty Three. Wheelchair’s First Holiday.

Perhaps this ableist attitude stems from the fact that disability tends to be a foreign and scary concept for most people. They hate to think that it’s something that will ever touch them, so it’s easier to pretend it’s not there at all, but disability can happen to anyone. It’s the one minority group that anyone can join, it could happen to you tomorrow. It doesn’t matter how healthy you are, how much yoga you do, how many wellness blogs you subscribe to, how many vitamins you take, or how ‘clean’ your diet is… whether through an accident or injury, genetics or bad luck, you could become disabled one day.

Disability is not as far away from most people as they think it is, so it’s best not to pretend it’s not there. Instead, acknowledge it, welcome it, and be active in creating a more accessible world. Then if you yourself one day become disabled, you’ll have far more equal opportunities to participate in society than those who came before you.

The Social Model of Disability

The model says that people are disabled by barriers in society, not by their impairment or difference. Barriers can be physical, like buildings not having accessible toilets. Or they can be caused by people’s attitudes to difference, like assuming disabled people can’t do certain things.

The social model helps us recognise barriers that make life harder for disabled people. Removing these barriers creates equality and offers disabled people more independence, choice and control.

SCOPE

Sadly it’s a common attitude of non-disabled people though, that disabled people have no interest in the world around them. That we aren’t well-rounded autonomous human beings with hobbies, interests and passions, just the same as non-disabled people. So they have little in the way of motivation to make the changes that would allow disabled people to fully participate in society.

The only reason I can think of why live-streaming events isn’t the norm, outside of a pandemic, is because the people who make events have simply never considered that there’s an audience. Either they genuinely don’t know that housebound people exist, or they they fall into the camp of “why would disabled people want this?”. They’ve been so well conditioned by a society that dehumanises disabled people, that they don’t realise that disabled people crave joy and variety from life as much as they do.

And perhaps that’s part of the problem. Cultural prejudice around disability means it is still too often assumed that disabled people do not actually “have a life, just like anyone else”: that they don’t have careers, relationships, interests or children.”

Frances Ryan, The Guardian

We’re lucky to live in a world in which the knowledge and technology exists to allow online access to events, so why aren’t we fully embracing it? Thanks to lockdown we all understand the value that it brings, so why wouldn’t we want to open up the world and bring joy to those who are forced to live in permanent lockdown?

I don’t know how to reach them.

While I had little luck with Suede’s management, I’m wondering if I’d have better luck with the band members themselves.

I could really do with this blog post somehow falling into the laps of Brett Anderson, Neil Codling, Simon Gilbert, Richard Oakes and/or Mat Osman. I don’t have a clue how to make contact with them though, not with the impenetrable wall that is their management standing between me and them.

So please PLEASE share the crap out of this post!!!

On the remote chance that I can make contact with Suede and they agree to trial my idea, I’m hoping I can use that as a launch pad to start a proper campaign, and have other bands/artists/musicians follow suit.

It would make me deliriously happy if this could happen in time for the Coming Up tour, but I expect it’s too late now. I believe they have a new album in the works though, so maybe then…

I’m quite sure that Suede have the power to make this happen. I can only hope that they value their invisible fans enough to be the band who lead the way in improving access to live music.

Wouldn’t that be a tremendous thing!

~

UPDATE – Friday 17th September

After publishing this post (on Tuesday 14th September) I contacted Suede’s manager directly (I managed to correctly guess his email address!) to explain my situation and I included a link to my blog. Yesterday I received a lovely reply.

It was a really encouraging email.

He likes the idea a lot and he understands how inclusive and significant it would be for the band’s disabled/housebound fans to be able to access Suede’s live shows via a live stream.

As I suspected it’s too soon to be able to make it happen for the Coming Up tour in November, but he and the band’s tour manager are discussing how they might be able to make it work for future tours. Though they can’t make any guarantees.

Overall I felt it was a really positive response.

He also commented on how well I explained my situation regarding gig-going, how well written it was, and that I got my message across incredibly well, which was very kind of him.

I’ll share any further updates if/when they happen.

~

For my personal ‘best of Suede’, click here to take you to a Spotify playlist I made recently for a friend. It’s in chronological order and includes 1-3 songs from all but one of their albums, and 2 b-sides. All of my favourites!

~

NEWS

ME Science & Research

The Guardian. UK to launch world’s largest genetic study into chronic fatigue syndrome

DeCode ME: The ME/CFS Study

Health Rising. The Cortene Drug Trial Results for ME/CFS Are In.

ME/CFS Skeptic. InTime: the results of Cortene’s CT38 trial.

Doctors With ME. Founding father of Human Genome Project joins Doctors with M.E. with leading evidence based policy expert as Honorary Fellows

ME In The News

The Guardian. We’re about to see a wave of long Covid. When will ministers take it seriously?

The Guardian. Apparently just by talking about it, I’m super-spreading long Covid

The Atlantic. Long-haulers are fighting for their future

The Times. Link between long Covid and ME could transform the lives of sufferers

General Disability & Chronic Illness

Forbes. We Need To Rethink The Penalties And Rewards Of Identifying As “Disabled”

Huff Post. Wellness Culture Is Ableism In Sheep’s Clothing

Metro. When spaces are made accessible for disabled people, everyone benefits

The Guardian. Disabled and clinically vulnerable shut out from return of live music and theatre

Post Thirty One. A Blog Post (Mainly) About My Blog – Looking Back & Looking Forward.

My blog was fairly quiet in 2018, with only eight posts. In comparison, I published fifteen posts in 2017, and eight posts in 2016, the first one being in August 2016. My reduced output has been a result of my worsened health and my various other commitments, which all contributed to the worsened health. The majority of 2018 was spent working on my PIP application and ESA renewal (disability benefits/social security), I also spent a lot of time going back and forth to my numerous hospital appointments – two Urology appointments, two Neurology appointments, one Gynaecology appointment, one CT scan, one MRI scan, a pre-op assessment and my Endometrial Ablation procedure. I’m hoping I’ll see fewer doctors this year, although it’s currently eight days in (to 2019) and I’ve already seen one consultant and had an ultrasound – I got to spend Christmas thinking I might have breast cancer – I don’t (phew), and I’m seeing another consultant in March – Gynaecology, again. I am hoping however that I’ll be a bit more prolific with my blog in 2019, I have so much I want to write about.

Stats

I’ve been thinking about what marks the success of my blog. It’s still a baby in the blogging world, when taking the numbers into account, but I take pleasure in seeing the number of people visiting my blog increasing steadily since I began it, from the hundreds to the thousands. I now have almost seven thousand readers, and almost twelve thousand views.

I also love to see how far reaching my blog has become. It seems completely unreal that there are people reading it all over the world. My blog is being read in sixty nine countries, that’s over one third of the world’s countries! See for yourselves!

Blog countries (2)
Argentina, Australia, Austria, Belgium, Brazil, Cambodia, Canada, Chile, China, Costa Rica, Croatia, Czech Republic, Denmark, Egypt, Estonia, Finland, France, Germany, Gibraltar, Greece, Guatemala, Guernsey, Honduras, Hong Kong SAR China, Hungary, Iceland, India, Indonesia, Ireland, Isle of Man, Israel, Italy, Japan, Jersey, Kenya, Lithuania, Luxembourg, Malaysia, Malta, Mexico, Monaco, Morocco, Netherlands, New Zealand, Norway, Pakistan, Philippines, Poland, Portugal, Qatar, Romania, Russia, Saudi Arabia, Senegal, Serbia, Singapore, Slovenia, South Africa, Spain, Sweden, Switzerland, Taiwan, Thailand, Trinidad & Tobago, Tunisia, United Arab Emirates, United Kingdom, United States and Vietnam.

Feedback

While the stats do make me happy, what means the most to me, is the positive feedback, especially from the ME community. When other people with ME can identify with what I’ve written, when they tell me how accurately I am portraying the illness, when they find comfort in it, when they use it to help educate the people in their lives, it is beyond anything I expected. I am now going to shamelessly blow my own trumpet. Here is a small selection of some of the lovely feedback that I have received.

A comment on Facebook about Post Nineteen. Time For Unrest. 

“I think this is probably the best piece of writing on M.E. I have ever seen. Smiling through the tears. Thank you.”

Someone shared my blog in the Phoenix Rising forum.

“I’ve only just discovered this blog, though I imagine others here in PR will already know of it. Not read all of it by any means, but what I read is good… in the sense it conveys well how bad life can be with ME. And Phoebe, whose blog it is, conveys a good sense of her own self, and hence how ME impacts her, and from that how so many other people are impacted by ME.”

A conversation between two people on Twitter about Post Twenty Seven. No, I’m Not Tired.

Person One: “The best coverage on the subject I’ve read in years.”

Person Two: “I was thinking the same thing – it sums up the situation beautifully!”

Person One: “Faultless and extremely comprehensive. Amazing though that so many words have to be used to explain the difference between fatigue and some other experience that probably doesn’t yet exist in any dictionary: hence, the art of description is a key aspect of this author’s triumph.”

A Facebook based ME support group shared my blog on their page. 

“I have a new favourite page! Love the posts, love the eloquence, love the wide range of M.E issues it focuses on, love the wealth of information … and I also love puffins and penguins! So it’s an all-rounder, really! Phoebe, who set up and runs the page, lives with severe M.E and I know from experience how much effort, energy and passion it takes to do this kind of thing, so please check it out if you can.”

The scariest post for me to publish was Post Twenty Six. How Having ME Has Affected My Mental Health. Having known people who have accused anyone who is open about their mental health struggles as “attention seeking”, I was really apprehensive about this post, but I received so much wonderful feedback.

“I very much admire the clarity and honesty of your writing. I recognise everything you say as true…your experience which you express so powerfully. I think you are a very special woman.”

“I want to thank you for your honesty and openness in expressing how your anxiety and depression affect you. Your courage in writing this and ‘socialising it’ is very powerful. It has arrived in my world at a time when I can say that from personal experience. I don’t have ME. My son does. But what you say rings very true for me sadly and that is validating. What you feel is what you feel and it’s important that others hold that intact and with respect.”

“You brave and wonderful person, as usual you have expressed so eloquently what many of us feel.”

“What an outstanding piece of writing. I and some of my close family have suffered from (non ME-related) clinical depression and your post perfectly encapsulates the feelings, desperation and hopelessness that depression produces.”

“I read your new blog yesterday. And goodness me it is so brilliant. So many of the things you write resonate deeply with things I’ve felt. And you’re just so good at phrasing things and expressing them. Also your raw and deep honesty is remarkable.”

“It’s brilliant. Really well written and really brave to put your feelings to paper. “

“You are amazing. I think your openness is admirable. People should hear. I’m really glad you are such a strong lady and still holding out and hate that you are having such a rubbish and painful time.”

University of Edinburgh

Something very unexpected happened in 2018. Every year the University of Edinburgh ask their Medical Sciences (BSc) students, as part of their module about long term illness experience, to talk, in pairs, to someone who lives with chronic illness or disability. These students go on to work as doctors, nurses, public health practitioners, research scientists or in other health-related occupations, and they consistently say that they learn the most from this part of the course.

I volunteered to be interviewed and within my email to the course lecturer I included a link to my blog. She replied to tell me that they actually had enough volunteers with ME, but she had read my blog, and thought it would make perfect study material for the module! As a result, my writing and experience reached all sixty students undertaking the course, and was discussed in class.

The class was in October, and I still feel amazed and honoured that my experience of ME was used in the teaching of the next generation of medical professionals, at least in this little corner of the world.

Borders General Hospital

I have been working on a post about my encounters with health professionals since having ME, both the good, the bad, and the downright disgraceful, but in the meantime, here’s one positive encounter I had with a doctor in 2018.

It was at my pre-op assessment appointment for my Endometrial Ablation. I always feel apprehensive about these appointments because I never know how they will react in the face of ME, I have no idea if my needs will be taken seriously, or mocked, or belittled, or just disregarded.

The doctor I saw was young, and, hold onto your seats, the first thing that came out of her mouth, was an apology, for not knowing much about ME. She told me it wasn’t covered at all at any point during her education/training. She asked me if it was ok to ask me some questions about my ME, and ME in general, because she wanted to learn. I was amazed and astounded. This so rarely happens. I have seen health professionals who haven’t heard of ME, or they have heard of it but know nothing about it, or they have heard of it but everything they think they know about it is incorrect, and whichever of these camps they fall in, they are rarely willing to learn from the patient. So I told her. I also gave her a card for my blog – I have some business-type cards for my blog which I always have on me – and I recommended that she watch the film Unrest on Netflix. She told me at the end of the appointment that she was going to spend the next weekend reading my blog and watching Unrest. Result! That’s one more doctor in the world who has a clue about ME.

What’s In Store For Me In 2019

I am hoping that this will be a better year, in terms of my health, blog output, benefits and stress levels, but I do have some big stuff about to happen.

I am planning on selling my flat in Edinburgh.

I moved out in August 2015 and have been renting it out since then. The plan was that the rental income would cover my mortgage, and I would eventually be well enough to move back in and get on with my life. I have now realised that this is not going to happen, the getting better, certainly not anytime soon. What I need to do, is to try and live as comfortably as possible, as I am, with severe ME. This means buying somewhere more suitable to live in Peebles and in order to do that, I have to sell my flat.

I have now given my tenants their notice, which I feel horrible about, I hate to be uprooting them, they’ve been good and hassle-free tenants, and when their tenancy ends, I will be putting my flat on the market. This has been a massive and terribly painful decision. When I moved out in 2015, it did not occur to me for one second that I would never move back in. Now, because I won’t manage the ninety eight steps up to my top/fifth floor flat, I’ll never even set foot in it again, not even to say goodbye.

I was so sure when I moved back to Peebles that it would only be temporary. I was even worried about what I would do if I was well enough to move back in within the first six months of my tenants lease, because within those six months, their tenancy was safe, it wouldn’t have been legal to kick them out. That’s how sure I was that I would recover. As sad as it is to think back to that time, I guess it definitively proves that ME cannot be cured by positive thoughts! Because back then, I absolutely positively thought I would get better, within months.

So anyway, this is big and scary decision, and it’s going to be a stressful few months, what will make it especially stressful for me, is that I have to trust other people to do everything for me. Relinquishing control will not be easy for me, actually, it will be excruciating, but I have no choice. Getting it ready for the publicity photos, the viewings, the packing, the removal of my furniture, all of it, will be outside of my control, which makes me feel sick.

I do however think that this decision perhaps signifies my acceptance of this illness, and my reality. The cottage that I live in now was only ever going to be temporary, and I’m now preparing for the long-term, the house that I will live in for as long as I have ME. If I do however get better, then I’m outta here! Peebles is a lovely town, but it was never where I imagined, or hoped, that I would spend the rest of my life.

I have also set a goal for myself this year. Partly because of a new rather annoying symptom in which I am sensitive to scents (in perfumes, soap, shampoo etc) and because I want to ensure that my presence on earth is doing as little harm as possible, I am planning on replacing all of my household cleaning products, toiletries and cosmetics with cruelty-free, unscented and preferably plastic free brands. I will be using up the items I already own, that I can tolerate, in terms of scent, because I don’t like waste, but I will slowly be replacing all of these products throughout the year.

This year I would also like to streamline my supplements. I want to be sure that the supplements I am taking are necessary, and I want to know if there’s anything I should be taking that I’m not. So I’m hoping to find a good, ME knowledgeable Nutritionist who is either local to me, or can do email/Skype consultations. If anyone can recommend someone, please let me know. Also, for ME people only, if there are any supplements you take that you think I should know about, please do let me know. I already take a few of the typical recommended supplements for ME people – CoQ-10, Acetyl L-Carnitine, L-Theanine, D-Ribose and B12, amongst others.

Now, this goes for all of you and for me, please remember that I have severe ME, this means that I may not be well enough to be successful in these goals, and I reserve the right to not meet them, and to not feel disappointed in myself because of it!

Finally, and slightly depressingly (not Brexit, although that is thoroughly depressing too), this year, on 28th February I will be “celebrating” my five year ME anniversary. While my more obvious ME symptoms didn’t start until late-summer in 2014, my first symptom, the one that started this whole thing, appeared late that night. I actually shared something on Twitter recently about how long I’ve had ME for, and someone commented saying she didn’t realise I was such a newbie, given how knowledgeable I am. This was really lovely to hear, especially from whatever the opposite of a ‘newbie’ is, ‘oldie’ sounds rude, but someone who has had far more experience of ME than I have.

 

NEWS

American Society of Hematology. Erythrocyte Deformability As a Potential Biomarker for Chronic Fatigue Syndrome.

http://www.bloodjournal.org/content/132/Suppl_1/4874?sso-checked=true

Health Rising. Could Poor Microcirculation Be Causing Chronic Fatigue Syndrome (ME/CFS)?

https://www.healthrising.org/blog/2018/12/04/capillaries-microcirculation-chronic-fatigue-syndrome-me-cfs/

Taylor & Francis Online. Genome-epigenome interactions associated with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

https://www.tandfonline.com/doi/abs/10.1080/15592294.2018.1549769?journalCode=kepi20&#.XAkeXL7haSg.twitter

ME Research UK. Visual aspects of reading performance in myalgic encephalomyelitis (ME).

http://www.meresearch.org.uk/our-research/completed-studies/visual-aspects-of-reading-performance/

Frontiers. The UK ME/CFS Biobank: A Disease-Specific Biobank for Advancing Clinical Research Into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

https://www.frontiersin.org/articles/10.3389/fneur.2018.01026/full

Health Rising. Ten Ways to Prove That Chronic Fatigue Syndrome (ME/CFS) is a Serious Illness.

https://www.healthrising.org/blog/2018/12/07/ten-ways-prove-chronic-fatigue-syndrome-serious-illness/

Cosmopolitan. 9 Rounds of Electroshock Therapy. 6 Years Lost. All Because Her Doctors Got It Horribly Wrong.

https://www.cosmopolitan.com/health-fitness/a25362145/electroshock-therapy-misdiagnosis/

Health Rising. Death in Chronic Fatigue Syndrome (ME/CFS) – What has it Told Us? The Autopsy Files.

https://www.healthrising.org/blog/2018/12/12/death-chronic-fatigue-syndrome-me-cfs-autopsy-files/

Presentation on ME/CFS from the OMF-sponsored Second Annual Community Symposium on the Molecular Basis of ME/CFS at Stanford University: Jarred Younger, PhD, of the University of Alabama at Birmingham on “How brain inflammation causes ME/CFS.”

Transcript: https://www.omf.ngo/wp-content/uploads/2018/11/EDITED-Jarred-Younger-How-Brain-Inflammation-Causes-MECFS.pdf

Watch: https://www.youtube.com/watch?v=8XrdSlpUQTE

Health Rising. Deconditioning Denied: Could a Large ME/CFS Study End the Deconditioning Myth?

https://www.healthrising.org/blog/2018/12/16/deconditioning-denied-chronic-fatigue-syndrome-deconditioning-myth/

Nick Brown’s Blog. Have scientists found an explanation for the onset of ME/CFS? 

http://steamtraen.blogspot.com/2018/12/have-scientists-found-explanation-for.html

Simmaron Research. The Probiotic Paradox: When Probiotics Fail or Even Do Harm – an ME/CFS Perspective.

http://simmaronresearch.com/2018/12/probiotic-paradox-probiotics-fail-even-harm-mecfs-perspective/

US National Library of Medicine. Peak Oxygen Uptake in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A Meta-Analysis.

https://www.ncbi.nlm.nih.gov/pubmed/30557887/

Health Rising. Ten Ways To Prove That Exercising Will Not Cure Chronic Fatigue Syndrome (ME/CFS).

https://www.healthrising.org/blog/2018/12/28/ten-ways-prove-exercising-not-cure-chronic-fatigue-syndrome/

Valerie Eliot Smith. Changing the narrative #1: exploring a new approach to strategic communications in the ME community.

https://valerieeliotsmith.com/2019/01/07/changing-the-narrative-1-exploring-a-new-approach-to-strategic-communications-in-the-me-community/

Frontiers. Estimating Prevalence, Demographics, and Costs of ME/CFS Using Large Scale Medical Claims Data and Machine Learning.

https://www.frontiersin.org/articles/10.3389/fped.2018.00412/full

Post Thirty. General Update – The Latest On My ME.

This has been a year of many referrals to specialists, which has resulted in a lot of hospital appointments. These referrals have all been made in an effort to find a way to manage some of my individual symptoms, and to rule out any cause, other than ME. I am very lucky that I have a GP who likes to see me every six weeks or so, and who takes my symptoms seriously. The previous GP’s and specialists I saw always brushed off any new or worsening symptoms as part of my ME. This of course is very likely, but it won’t necessarily always be the case, and we won’t know unless we investigate. This dismissiveness is what caused the delay in my Endometriosis diagnosis, and what put a halt to the bladder investigations. I hate to think that I could have had something more sinister going on, but, because of this attitude that many doctors hold about ME, it wouldn’t have been diagnosed until my autopsy! So I’m very grateful for my GP, I can always trust that she will take me and my symptoms seriously. 

With all these referrals and various other things going on this year, I haven’t been well enough to individually update all the people who are regularly in contact with me, so again I decided to write a general update here, for those who are interested. It’s an exciting adventure from my brain and spinal cord, via my bladder and uterus, to my hands and my feet!

Neurology

I saw my Neurologist again in November, the first appointment since I received my brain and spinal cord MRI scan results. When I first saw this Neurologist in May he said my symptoms were indicative of ME, and/or Multiple Sclerosis (MS). So the purpose of the scans was to confirm or rule out MS, and I guess to see if there was anything else visible that could explain my neurological symptoms. Well, as I kind of expected, my scans showed no abnormalities. So MS has now been ruled out, again.

I don’t know how I feel about that. Life with a MS diagnosis would be easier than life with a ME diagnosis, simply in terms of how each illness is regarded by other people. If I had MS, I would still be very unwell, but I could ‘just’ be unwell. I wouldn’t have to spend my time and energy educating people and putting right their misconceptions. But, if I had been diagnosed with MS, instead of ME, what would I do with my time? Currently the main that keeps me going – through the pain, the uncertainty, the loss, the grief, the isolation, the loneliness, the depression – is ME advocacy. I’m so invested in fighting for health equality for people with ME, what would I have done if I’d found out that I didn’t have ME? Ditch the ME advocacy and turn to MS advocacy? Except, MS doesn’t need the advocacy, not like ME does (MS, despite there being fewer than half the amount of people with MS than people with ME, gets considerably more funding for research). I expect I wouldn’t have been able to abandon my ME advocacy efforts, not now that I know what people with ME have to contend with – the misconceptions, the abuse, the neglect, the mockery, the lack of care, treatment and respect, and the chronic lack of both funding for biomedical research, and education for medical professionals. So, I would have been a person with MS, but advocating for people with ME, I would also have had to rename my blog, which would’ve been a pain in the bum, so I guess there is a silver lining in being stuck with ME.

I got to see my brain and spinal cord MRI scans, which was fascinating. I hadn’t realised just how tail-like the very end of the spine looks. Apart from a few signs of normal ageing, everything looks healthy. In fact, he saw fewer signs of ageing than he would have expected. So, I’m the most unwell I have ever been, I’m barely functional, but my brain (structurally) looks completely healthy. This was noted after my first brain scan in 2015 too, that it was an unusually healthy looking brain. Apparently most people have a few lesions, and above a certain number, it would be indicative of MS – I have none. My mum and I were discussing this after my appointment. Maybe the reason my brain isn’t ageing as would be expected is because of my ME brain fog, I do less thinking, and as a result, my brain looks younger! But I think it’s probably just down to luck, maybe genetics, who knows. I find it quite frustrating. On paper I’m the healthiest person ever, but in reality, my body is malfunctioning left, right and centre. I feel like I’m very slowly dying.

The most useful bit of the appointment was getting a name for my newest symptom, Myoclonic Seizures (non-epileptic seizures). They are fairly common in ME, especially severe ME, I believe, which makes sense given the neurological component of ME. There’s nothing I can do about them though, and unless I ever lose consciousness when it happens, they aren’t really anything to be concerned about. He did ask if I can try and record it on my phone the next time it happens, which I think might be a bit tricky.

Basically there’s nothing more he can do now. But I can arrange another appointment with him if I want to, to discuss worsening and/or new symptoms, or if I just want to speak to him about anything specific/neurology related. Given how most Neurologists treat people with ME, and my awful first encounter with a Neurologist in 2015, I think I’ve been pretty lucky this time.

Urology

I saw a new Urologist this year as well, which was prompted by the sudden worsening of my bladder symptoms in February. I had previously been diagnosed with Overactive Bladder Syndrome (OBS), but I was never quite convinced, the symptoms just didn’t match. The new Urologist seemed to agree with me, and said there was a test they could do which would confirm or rule out OBS, and again, the results came back normal, so I think that means the OBS was a misdiagnosis. Why the first Urologist I saw in 2014 didn’t do this test, I don’t know.

This doctor was also interested in the results of my MRI scan, specifically of the spinal cord, but again there was nothing visible in the scans that could be the cause of my bladder symptoms. So we’ve pretty much concluded that my bladder symptoms are simply ME symptoms, and the only chance of them improving, is if my ME as a whole improves.

The Urologist, in an effort to do something helpful, did refer me to a bladder nurse (that’s probably not her official title) who visited me at home. She asked me lots of questions about my diet and water intake etc, and said there are no improvements needed in that department, my diet is as healthy as can be. She asked if I had ever made notes of what I eat and when, to see if I notice a pattern in my bladder symptoms. I have already done this, and the only clear trigger is chilli. Since early/mid- 2014 I have not been able to eat chilli in any form – no fresh chilli, dried chilli flakes, chilli powder or paprika etc. Of all the food I am now intolerant to, thanks to ME, this is the most upsetting. I love chilli. I miss spicy food far more than I do alcohol, which I have also had to give up. I can tolerate pepper though, and I find white pepper to be the best substitute for chilli. Black pepper offers more flavour, but white pepper has more heat.

So, the bladder nurse left having told me that there’s very little she can offer me. As a last ditch attempt, she did suggest I start doing regular pelvic floor exercises again. I did do these back when I saw the first Urologist, and it didn’t help, but I thought it could be worth giving the exercises another shot. However, it turns out that pelvic floor exercises now cause me pain and in fact trigger my bladder symptoms, which is what I experience when I use tampons. I mentioned this to my GP (I had a forty five minute appointment with her a few days ago, to get through my mammoth list of maladies), and she told me to stop doing them. So that’s that. My bladder doesn’t like having ME.

Gynaecology 

Also this year, I was referred back to the Gynaecologist I saw in 2016, the same one who diagnosed my Endometriosis (the first Gynaecologist I saw in 2015 refused to investigate for Endometriosis as she believed those symptoms were ME symptoms). I mentioned in my last General Update post that I was considering Endometrial Ablation. This is the removal of the endometrium, or, the lining of the uterus. The purpose is to reduce the amount of blood loss during my period, or eliminate it altogether. It can only be done on women who either don’t want to have children, or don’t want any more children, because, while technically pregnancy can occur, it would be dangerous, and most likely result in miscarriage. Thankfully my doctor trusts that I know my own mind, and believes me when I tell him I don’t want to have children, and he agreed it would be a good solution for me. I had it done at the beginning of November.

It is often performed under a local anaesthetic, and that was what I initially wanted, thinking it would be gentler on my ME, but the doctor advised I go for a general anaesthetic. He said that even with a local, and pain relief, I would find it incredibly painful, specifically, the forceful dilation of the cervix, which they need to do to access the uterus, in order to burn the lining off, and he advised that anyone who hasn’t already experienced this (dilation) through childbirth, should go for a general. He said the intense heat from the actual burning off of the lining would be very unpleasant too, and that was the bit that actually changed my mind, also, my ME actually didn’t react too badly after my last two generals, so I chose the general and hoped for the best.

On the day of the surgery (well, it isn’t really surgery, given no incisions are made, but you know what I mean) I had to arrive at the BGH (Borders General Hospital) at 7.30am, which, due to my ME induced wonky sleep schedule, is the middle of the night for me. It meant my mum had to pick me up at 6.30am, and because I wasn’t allowed to drink anything after 5.30am, I got up at 5.25am so I could quickly take my morning meds with a glass of water. The early start was what I was dreading most about the day. I’m often unable to move and lift myself up for a while after I wake up (a ME symptom, it’s like a temporary paralysis), so when I have to get up at a certain time to make an appointment, to be sure I’ll actually manage to get out of bed in time, I need to set my alarm for one to three hours before I need to get up. I went for one hour on this occasion, which meant I woke up at 4.30am. I also rarely get to sleep before 1am, and on this night it was closer to 2.30am, so I went to hospital on two hours sleep. This early start however did give me something that I had been missing for the last four years, without really realising I’d been missing it. On the drive to the hospital, I saw the sunrise! It wasn’t the best sunrise I’d ever seen, but it was still pretty great. Living in such isolation, I’d kind of forgotten that the world is still turning.

I was the first surgery of the day, so thankfully I didn’t have to wait too long beforehand. I was wheeled along at 9am-ish, woke up at 10.08am, and I was discharged around 2.30pm. Overall, the actual being in hospital wasn’t as bad an experience as previous times. I don’t often experience this, but the nursing staff really took care of me. I felt like they always had it at the forefront of their minds that I wasn’t just a surgery day-patient, I was a ME patient too. They really did their best to make sure I was comfortable. Just being in hospital for a few hours, the early start and the drive there and back meant it was a huge day for me, in terms of ME, and far more than I can safely manage, meaning, without having a huge crash afterwards. So in these situations I always appreciate when the nursing staff try to mitigate any factors that could make it even worse for me, in this case, making sure I was in the quietest bit of the unit. When I had my tonsils removed in 2017, this did not happen. 

I’ve had five surgeries/general anaesthetics in my life, two were pre-ME, and the other three all since I’ve had ME. Something I’ve noticed with my last two anaesthetics, plus this one, is that I seem to feel remarkably well, in terms of my ME, for the rest of the day (of the operation), it continues through the following day, but the next again day I feel worse, and I continue to feel terrible until the crash wears off. It makes me think that there’s something in the drugs they gave me for the anaesthetic that helps my ME, and as the anaesthetic wears off, thirty six hours or so later, I then begin to feel the effects of the over-exertion and the surgery. When I say I feel remarkably well in the hours after the surgery, I don’t mean that I feel as well as can be expected for someone with ME who’s just had an operation, I mean, I feel better than I do even on my ‘normal’ ME days. Obviously I feel the effects of whatever the surgery was, in this case I had lower abdominal/pelvic pain, but it’s almost like my ME improves in the hours immediately after the anaesthetic. This makes me wonder, if I’m not imagining it, which of the drugs is it, and, would it be possible to be given a daily low dose of whatever drug it is? What is also really strange, is that, since having ME I’m usually so intolerant to medications, even really mild stuff, I tend to get all the side effects, and severely, so how does my body tolerate powerful anaesthesia drugs? 

I heard another theory recently, that people with ME recover from anaesthesia faster than other people. Or perhaps it would be more accurate to say, we ‘feel’ like we recover from anaesthesia faster. We’re used to feeling unwell, so, while a non-ME person will feel rough after an anaesthetic, people with ME just feel ‘normal’, because we always feel rough. I have no idea how accurate this is, but it is an interesting idea.

But anyway, after the effects of the anaesthetic wore off I did crash, badly, and I’m still not quite back to how I was beforehand. But this was to be expected given how full-on that day was. It’s too soon to tell how well the ablation has worked as it takes a few months to settle. I have had a period since the procedure, and while the bleeding has been minimal (which is good), it’s lasting longer (seventeen days so far, my norm is six/seven days), and it has been very painful, at times more so than my pre-ablation periods. I’m hoping it’s because my uterus is still healing, the inside of it is still an open raw wound, so having a period in a not yet healed burnt out uterus is bound to be painful, I imagine.

Oh, and one more thing, after the sunrise, the next best bit of the day was during my pre-op chat with the anaesthetist. While discussing my odds of a swift recovery from the anaesthetic, she said something along the lines of… “you don’t drink alcohol, you don’t smoke, you’re slim…” !!! She said I was slim! This may be rather superficial, but staying in control of my weight has been difficult since having ME, and is a source of anxiety for me. I can’t exercise, so diet is the only tool I have to manage my weight. Thankfully, I genuinely love eating the diet that I do. Giving up animals, animal products, refined carbs and refined sugars is not a hardship for me. I don’t count calories, I really don’t care what the calorie content is of the food I eat, I care more about knowing that everything I do eat, is doing me good. I also only eat two meals per day, partly because I’m only out of bed for ten hours each day, so I can’t fit in three meals, I also don’t have the energy to prepare three meals per day, and my appetite is smaller now, perhaps because I’m less active. Also, because I fit my two meals into a ten hour window, I spend at least fourteen hours per day not eating. This means that I am inadvertently following an intermittent fasting diet. Apparently going fourteen hours without food and having a ten hour eating window is the new trend in intermittent fasting. I don’t know if there’s any validity in this, but if there is, maybe that’s helping me control my weight too. So, anyway, given I always feel a bit on the podgy side, it was nice to be described as slim, and in a factual/medical way, not as a compliment by someone desperate to appease me. 

Hands

Have I mentioned this before? I can’t remember. I’ve been having some issues with my hands since late last year. Almost every day, usually late at night, my fingers and palms turn red and feel burny hot, it’s incredibly painful. It often happens when I’m trying to go to sleep, but the burny hotness prevents me from getting to sleep. I have to be touching something cold to get relief from the pain. So I try to get comfy, with my head on the pillow and my hands pressed against the cold walls. After a while, the same thing was happening with my hands, they go red and burny, but a finger or two turns waxy white and feels icy cold. It’s very odd, but I can at least press the icy cold fingers against the burny hot bits to cool them down. My feet are a bit weird too, they go red, or purple, or one goes red and the other goes white, but when it happens to my feet it isn’t painful.

My GP and I went back and forth between Mast Cell Activation Syndrome (MCAS) and Raynaud’s Disease, both conditions in their own right, and also both quite common in combination with ME. I tried some medication for MCAS, a high dose antihistamine, but it didn’t help, which is what made us settle on Raynaud’s, but I think there may be a bit of both going on. I could try a blood pressure medication to help with Raynaud’s, but my GP doesn’t advise it, given the side effects, which would exacerbate my ME symptoms and make me feel worse in general.

However! I have been getting acupuncture treatments since the start of the year for migraines and general ME stuff. After it seemed like Raynaud’s was the most likely culprit for my hands, I asked my acupuncture man if he thought acupuncture could help. He went away and did some research, and found that there are specific acupuncture points for treating Raynaud’s, in the palms of my hands. So, as well as the needles in my feet, front of my hands and head, since September I’ve had one in each palm too. I have no idea how it works, I can’t even say if I really believe it works, because I don’t understand it, it doesn’t seem like it should work, but somehow it does seem to work. Maybe acupuncture is a placebo therapy, or maybe there really is something to it, but honestly, I don’t really care. Since we started using the Raynaud’s specific points, the burny hot and icy cold hands/fingers still happen, but not as frequently, and when it does happen, it doesn’t last as long, rarely for more than thirty minutes, whereas before, it would be almost every day, and for a few hours at a time. I didn’t make any other changes at this time, unless it’s a total coincidence, it surely must be the acupuncture.

Post Exertional Malaise (PEM), Post Exertional Neuroimmune Exhaustion (PENE) and Mental Health

*Apologies for all the upcoming acronyms, I know it makes for more difficult reading, especially for people with ME/brain fog. It certainly muddled my head while writing this section, but it was marginally easier/less muddled than writing the full names each time. 

If you’re a regular reader, or someone who has ME, you’ll know that the defining symptom of ME is the abnormal response to exertion. It’s not, as is often reported, fatigue. In fact, you don’t even need the symptom of fatigue to be diagnosed with ME.

This abnormal response to exertion is most often referred to as Post Exertional Malaise (PEM). Malaise however, which means “a general feeling of being under the weather”, is a dreadful word, and is so not descriptive of the symptom. I have always used the term PEM though, and I’ve mentioned it a lot in my blog, but I’m thinking of moving away from this. I don’t believe it’s very helpful. Along with the names Chronic Fatigue Syndrome (CFS) and the newer name that some organisations are trying to foist upon us, Systemic Exertion Intolerance Disease (SEID), I don’t think it does people with ME any favours. Rather, it may be aiding the misconceptions that exist about ME. So, I think I might start using the more accurate, Post Exertional Neuroimmune Exhaustion (PENE). And yes, I know pene is Spanish for penis –  that is unfortunate.

PENE is the term used in the International Consensus Criteria (ICC), the most thorough and up to date ME criteria, which I shared in Post Seven. Below I have shared the descriptions of both PEM and PENE. This was taken from a document created by the charity ME Advocacy, comparing ME as defined by the ICC, and as defined by the Institute of Medicine (IOM – but now known as the National Academy of Medicine).

The IOM criteria of ME, or as they call it, ME/CFS aka SEID, is lacking in comparison to the ICC. It’s vaguer, and as a result it will include people with illnesses that are not ME, and this is problematic. It risks watering down ME research if the people recruited to participate don’t all have ME. The ICC is simply more descriptive of the illness, and I believe it should be the only ME criteria – for diagnostic, educational and research purposes.

Post Exertional Malaise (PEM)

PEM is worsening of a patient’s symptoms and function after exposure to physical or cognitive stressors that were normally tolerated before disease onset. Subjective reports of PEM and prolonged recovery are supported by objective evidence in the scientific literature, including failure to normally reproduce exercise test results (2 day cardiopulmonary exercise test) and impaired cognitive function after exertion. There is sufficient evidence that PEM is a primary feature that helps distinguish ME/CFS (SEID) from other conditions.

Frequency and severity of symptoms should be assessed. The diagnosis of ME/CFS (SEID) should be questioned if patients do not have these symptoms at least half of the time with moderate, substantial, or severe intensity.

Post Exertional Neuroimmune Exhaustion (PENE)

This cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions.

Characteristics are:

  1. Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse.
  2. Post-exertional symptom exacerbation: e.g. acute flu-like symptoms, pain and worsening of other symptoms.
  3. Post-exertional exhaustion may occur immediately after activity or be delayed by hours or days.
  4. Recovery period is prolonged, usually taking 24 hours or longer. A relapse can last days, weeks or longer.
  5. Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level.

For a diagnosis of ME, symptom severity must result in a significant reduction of a patient’s premorbid activity level.

What I might do for now, so as not to confuse folks, is refer to it as PEM/PENE, and maybe one day I’ll drop the PEM completely.

I brought this up because my own PEM/PENE has been a lot worse this year. I wish I could learn from this, and I can to some extent, but due to the delayed onset, it’s incredibly difficult to measure. I can never quite know what causes my crashes. When I feel myself starting to crash, I always wonder what caused it – was it my shower the night before, my lack of sleep that night, or my GP appointment two days ago? There’s no way of knowing. I can repeat those activities, to try and find a pattern, but the results will vary. What makes it more complicated is that I often seem to have shorter term crashes going on within my longer term crashes – crashes upon crashes!

I’m still in a long term crash (maybe relapse is the better word here) from my Iceland trip last December. This means that I’ve manged far less activity this year than previous years. Last year, I could still go out for the occasional coffee, maybe once every two months – not anymore, the last time I went out for coffee was December last year. I can now only leave my home for medical and counselling appointments, and for very rare short outings with my mum, usually for a drive. All of these outings cause me to crash, but I have to weigh up the benefits. Having regular support from my GP and counsellor, and getting outside for fresh air and a change of scenery every few months is vital for my mental health.

While I’ve been in my Iceland relapse, I’ve also had a lot of other things going on, all of which have contributed to my decline this year. The summer heatwave and the many months I have had to dedicate to working on my PIP application and my ESA renewal (disability benefits) have been a huge factor. It’s been an emotionally difficult year too. There was that thing with the cat (see Post Twenty Nine). Also, in July this year some of my relatives from the States and Canada came to Scotland for a family reunion. I saw them all briefly, and it was lovely to see/meet them (three second cousins who I haven’t seen since 1988 – one of them was the first baby I ever held!), but it was also very difficult for me not being able to take part in the family dinners and day trips. While it always makes me feel sad, I usually handle these things ok. I know that life has to go on around me, I can’t ban everyone I know from living until/if I’m well enough to join in again, but this was a particularly difficult one. 

An inevitable consequence of my ME worsening this year, is that I’ve generally felt a lot more isolated. I haven’t been well enough to socialise and interact with people as much I would like, or need to. I do have a handful of people who, in lieu of seeing me in person (due to geography or lack of time), do keep in regular contact with me. These are the people who understand and accept my limitations and don’t expect more from me than I can offer. So many people have disappeared from my life since having ME, so the ones who have stuck around are invaluable to me. I still grieve for the people I’ve lost, and I try not to be angry with them, but I can’t help but feel hurt. Not everyone is built to handle chronic illness and disability. They can’t cope when their previously healthy friends suddenly have different abilities, needs and priorities, they don’t know how to deal with it, so they distance themselves from it. 

The other consequence of my continuing/worsening ME and the isolation, is the decline in my mental health, which I am still struggling with, both the depression and anxiety. At the moment I feel I can handle the depression slightly better than the anxiety. I am, at times, not all the time, able to distract myself when I’m feeling low in mood. But I find the anxiety is harder to ignore. The nervous dread that I feel, the panic and the constant feeling afraid, of everything and of nothing in particular, is crippling. I’ve said before that I liken this to the feeling I had when waking from a nightmare as a child. But now, it’s a permanent fixture within my life. I’m hoping that this will ease as/if I can gain more control of my life. I have some changes to make and things to do, all of which I will get into next year. 

I think that’s it

As far as I can remember, I think that’s us pretty much up to speed. What I haven’t covered in detail is my PIP application or my ESA renewal, and I also want to tell you about what’s going on in the wider world of ME, from the NICE guidelines review for the treatment of ME (The National Institute for Health and Care Excellence – they provide guidelines for the NHS), to my own personal advocacy efforts. But there’s so much to say that these really merit posts of their own, which I’ll hopefully get round to soon, ish. 

 

NEWS

The Sunday Times. How it feels to… be exhausted 24 hours a day.

https://www.thetimes.co.uk/article/how-it-feels-to-be-exhausted-24-hours-a-day-28cx59bn9

Simmaron Research. Immune Study Adds to Evidence Of Body-Wide Problems With Energy Production in Chronic Fatigue Syndrome (ME/CFS).

http://simmaronresearch.com/2018/11/immune-study-evidence-energy-production-chronic-fatigue-syndrome/

Simmaron Research. Could “Junk DNA” Be Causing Chronic Fatigue Syndrome / Myalgic Encephalomyelitis?

http://simmaronresearch.com/2018/11/junk-dna-causing-chronic-fatigue-syndrome-myalgic-encephalomyelitis/

Stonebird. Severe ME : What You Don’t Say, What You Don’t See.

http://stonebird.co.uk/WYC/index.html

Health Rising. Workwell’s Two-Day Exercise Tests and Breaking the Deconditioning Dilemma in Chronic Fatigue Syndrome (ME/CFS).

https://www.healthrising.org/blog/2018/11/19/workwell-cpet-deconditioning-dilemma-chronic-fatigue-syndrome-me-cfs/

Simmaron Research. Could Crippled Herpesviruses Be Contributing to Chronic Fatigue Syndrome (ME/CFS) and Other Diseases?

http://simmaronresearch.com/2018/11/crippled-herpesviruses-contributing-chronic-fatigue-syndrome-mecfs-diseases/

Health Rising. Anaerobic Thresholds, Fatty Acid Problems and Autophagy: Dr. Klimas’s Exercise Study.

https://www.healthrising.org/blog/2018/11/15/anaerobic-thresholds-fatty-acid-problems-and-autophagy-dr-klimass-exercise-study/

Health Rising. Free Six-Part Online ME/CFS / FM Video Series From the Bateman Horne Center Begins.

https://www.healthrising.org/blog/2018/11/09/online-me-cfs-fm-fibromyalgia-video-bateman-horne-center/

Health Rising. Are “Old” Muscles Holding People with Chronic Fatigue Syndrome (ME/CFS) Down? Plus Tompkins’ Team Promises New Insights.

https://www.healthrising.org/blog/2018/11/07/muscles-old-chronic-fatigue-syndrome-tompkins/https://www.healthrising.org/blog/2018/11/07/muscles-old-chronic-fatigue-syndrome-tompkins/

Bateman Horne Centre. Cutting Edge Technology for ME/CFS Biomarker Discovery.

https://batemanhornecenter.org/accelerating-research/

Not The Science Bit. The Triumph of Eminence-Based Medicine.

https://notthesciencebit.net/2018/11/03/the-triumph-of-eminence-based-medicine/

Health Rising. ME/CFS, Naviaux’s Cell Danger Response and a Nervous System Under Threat.

https://www.healthrising.org/blog/2018/10/29/me-cfs-naviaux-cell-danger-response-freezing-nervous-system-threat/

BBC News. ME and chronic fatigue: ‘Some doctors don’t believe you’re sick’.

https://www.bbc.co.uk/news/uk-wales-45954552

Health Rising. The Metabolic Trap Shines During the Symposium on the Molecular Basis of ME/CFS at Stanford.

https://www.healthrising.org/blog/2018/10/18/the-metabolic-trap-shines-during-the-symposium-on-the-molecular-basis-of-me-cfs-at-stanford/

Health Rising. GET Paper Withdrawal Shocks CBT/GET Proponents – Emboldens ME/CFS Advocates.

https://www.healthrising.org/blog/2018/10/20/get-paper-withdrawal-shocks-cbt-get-proponents-emboldens-me-cfs-advocates/

Sage Journals. Graded exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome is not effective and unsafe. Re-analysis of a Cochrane review.

https://journals.sagepub.com/doi/full/10.1177/2055102918805187

CNN. Indie pop sensation’s disease became his muse.

https://edition.cnn.com/2018/10/05/health/chronic-fatigue-stuart-murdoch-belle-sebastian-turning-points/index.html

Simmaron Research. Could the Brain’s Mast Cells Be Causing Chronic Fatigue Syndrome (ME/CFS)?

https://sable.madmimi.com/c/16005?id=2732257.9403.1.5b43278c3d7ba2fa12d3bcc50d542c6b

Health Rising. Invasion: The Source of the Neuroinflammation in Chronic Fatigue Syndrome?

https://www.healthrising.org/blog/2018/09/25/invasion-neuroinflammation-chronic-fatigue-syndrome/

Health Rising. Brain on Fire: Widespread Neuroinflammation Found in Chronic Fatigue Syndrome (ME/CFS).

https://www.healthrising.org/blog/2018/09/24/brain-fire-neuroinflammation-found-chronic-fatigue-syndrome-me-cfs/

 

Post Twenty Nine. How A Cat Taught Me Just How Bad My ME Is.

I learned a lesson recently about how much my illness limits what I’m capable of, and I learned it in the most painful way possible.

For the last couple of years I have thought about getting a cat. I love cats. I haven’t had one since my childhood cat, who we’d had since she was a kitten, and died in December 1998, when I was eighteen. I’ve always expected that I would get another cat one day. The years that I lived in Edinburgh pre-ME I only lived in flats with no direct access to a garden, and I didn’t want an indoor cat, but since I moved back to Peebles, in a house with a garden, I began thinking again about getting a cat.

I’ve gone through the same pattern for the last couple of years. I would decide it was time to get a cat, I would search the local cat rescue websites, I’d fall for a particular cat and I’d get all excited. But then reality would kick in, and I would question how sensible it would be, given how incapacitated I am by my ME, and I live alone. I’d eventually decide against it, until the next time. This has been going on for at least two years.

Well, it turns out that all the reasons that had stopped me from getting a cat, were correct, and I discovered this in the most difficult way.

More recently, due to the isolation I live in, and how lonely it is, I began to focus on the company a cat would give me. So many people said it would be so good for me, that having a cat would be therapeutic, and I decided to trust that, and just do it.

A couple of weeks ago my mum took me to visit a local cat rescue centre. I told them that ideally I wanted an older cat, partly because it would likely be less active and just want to sleep and cuddle, and be as low maintenance as possible, and partly because I felt sorry for the older cats that no one else wanted. The first cat they introduced me to was fourteen years old, and had been at the shelter for over a year, longer than any of their other cats. That is what sold me, I felt so bad for her, being overlooked for over a year because of her age. She was really small and so pretty. She was also grey and white, the same as my old cat. Initially I had decided against a grey and white cat because I didn’t want to feel like I was getting a replacement cat. But she was the best option of all the cats they had, and I wanted to give her a lovely forever home for her old age. I told them she was the one, and we arranged for me and mum to collect her the following week.

The day after I met her I started to have doubts. The same thoughts that had stopped me from getting a cat previously were filling my head, and my gut was telling me not to go through with it, but I foolishly decided to ignore that. Everyone else was so sure this would be so good for me and my mental health, that I decided to just focus on the excitement of having a cat for company. The excitement was genuine, I really love cats, but so were the doubts. I felt regret almost immediately after my mum and I went to collect her.

She did not enjoy the car journey home, both puking and pooing in the cat carrier. When we arrived home and I opened the carrier she headed straight for the box I had prepared for her, with warm woollen blankets and a hole cut out the side, so she would have a safe place to be when she wanted to hide. She didn’t stay in the box for long, after a few minutes she ventured out and ate some biscuits, then she set about exploring my bedroom. I had been told that when re-homing a cat it’s best to keep them in one room for a while, to help them adjust, and she would let me know when she wanted to explore further. Well she let me know almost immediately. I was expecting her to stay in my bedroom for a few days at least, but she wanted out within a couple of hours. It was fascinating watching her explore, she was very thorough. First she had a wander around the bathroom, looking back at me every now and then, then she headed upstairs to my living room/kitchen. She did the cutest thing when she wanted to see something higher up, standing up on her back legs like a human. She gave herself, and me, quite a fright when she tried to jump up the defunct chimney and slid back down crashing onto the top of the fake wood burning stove sending candles and chimney dust everywhere. I quickly realised that this was a remarkably active senior cat, she was a kitten at heart, not an old lady.

I really enjoyed watching her investigate my home, and I loved that she was clearly becoming comfortable with me. I had been told that she had a tendency to swipe at people, which she did once, and there were a couple of hisses, but generally she was sweet and playful and she kept headbutting me in that lovely way that cats do when they want attention and head scratches. She had the loudest purr and the deepest meow I’ve ever heard, it was not a sound I was expecting to come out of such a dainty and feminine looking cat. One of the loveliest things about her was her desire to be near me, she followed me everywhere. But despite how sweet and lovable she was, I also felt weirdly scared, and really really anxious. I was feeling the enormity of this new responsibility that I had for a another living creature. I began to feel incredibly overwhelmed.

I need to rest, a lot. Most of my day is spent resting and moving as little as possible in order to preserve what little energy I have, so that I can do essential tasks like eat, brush my teeth, go to the toilet, take my medications and attend my medical and counselling appointments. But now I was constantly having to get up off the sofa to remove her from places she shouldn’t be, rescue her from places she got stuck and investigate loud noises coming from the other room, thinking I was going to find her injured and/or the room in chaos.

She slept for an hour or so in the evening, but she was awake all night. Awake and very energetic. Due to the noise she was making – crashes, bangs and wallops, and meowing very loudly, I barely slept either. Again I kept having to get out of bed to tend to her. She’d get herself stuck and meow until I rescued her, or she’d be bounding around the living room upstairs from my bedroom, and even with ear plugs in, I heard her almost every movement. She wasn’t being naughty, just very eager and excitable in her explorations. Perhaps naively, I hadn’t anticipated the exertion it would require from me. This constant having to get up and down to deal with her, which of course was on top of all the routine stuff involving feeding her, dealing with the litter tray (until I could let her go outside) and playing with her. It was too much physical activity for me.

In the morning, after practically no sleep, I really began questioning whether I had done the right thing. I did know that this additional activity required on my part would reduce as she settled down into a routine, began to sleep through the night and have the freedom to get outside. I also knew it would take time for her to settle, but I completely misjudged my ability to cope with it, well, my ME’s ability. I realised that I just would not be able to cope with the few weeks it would take her to settle. Sleep is never restorative for me, but getting almost no sleep has a massive impact on my body and symptoms over the following days. Given how dreadful I felt after that one night, I knew I couldn’t go on like that. I had made a mistake, and I began to think I should return her to the shelter.

I spoke to a few people about it, and most had very good arguments for keeping her, telling me that this settling in period would not last forever. But these people don’t have ME, they don’t know what it is like to (attempt to) function on an energy/activity level that has decreased to anywhere between 3-10%, occasionally creeping up to 15% on a “good” day. She was a lovely wee cat, and was not to blame at all, but I realised that if she stayed, I would crash, hard. I’m not back to my pre-Iceland level of ME, and I feel like I was only just beginning to recover from the ten weeks it took me to complete my PIP form and the summer heatwave. I simply cannot cope with another major crash.

There was also something that I just hadn’t considered at all. On less good days, sometimes even on normal days, I struggle with any movement within my vicinity. It’s why, when mum comes over, for example, I can’t cope with her knitting while we chat, or just while I rest, because the movement of her knitting gives me vertigo-like symptoms. On my worst days, actually, even on my normal days, I struggle to do things like wash my dishes, and sometimes I can’t even cope with my mum washing my dishes for me, because of the movement and the noise. It was the same with the cat. After my sleepless night, just the movement of her grooming herself, out the corner of my eye, made me feel lightheaded and dizzy. Also the smell of her cat food made me feel nauseous, and in such a small house, I could smell it from every room. I’ve never been bothered by the smell of cat food before, but my ME makes me hypersensitive to various things – medications, noise, light, temperature, alcohol, food, and now it turns out, smells.

It was the most difficult and painful decision, but after long talks with my mum, sisters and the shelter, I decided it was best to return her. I could barely talk while I was on the phone to the shelter, they were nice about it, but I felt terrible, and was sobbing throughout the call. I was sure they were going to add me to some international cat re-homing blacklist, and maybe they have. I donated all the cat food and litter I had bought to the shelter, not that this helped to ease my conscience at all.

My sister came round with my niece and they took her back that afternoon. Unfortunately it was another puke and poo inducing car journey for her, and I hate that I put her through that. I felt like a monster as I put her back in her carrier, which, from her protestations, she clearly remembered from the previous day. I also hate that after a year in the shelter, I gave her a taste of a ‘normal’ life, she seemed happy in my home, then I took it away from her. I currently feel like the worst person in the world.

I hope that by returning her after twenty four hours, as opposed to waiting a few weeks then returning her, she won’t remember me. Cats first become attached to places, as opposed to people, so I know/hope she won’t have become attached to me, so won’t miss me. It’s not like she was aware that I had intended to keep her forever, for all she knew it was only ever going to be a day/overnight trip, like an extended vet visit, but with no vet, a chimney to explore and lots of toys. I really miss her, she was so sweet and was great and entertaining company. She will make a lovely pet for someone, if they can just see past her age.

Maybe if I already had a cat before getting ME, and it was with me from the beginning of my illness, I would be able to cope with it far better. But I cannot cope with the settling in period, and there’s no way around that. I so wish I had trusted my instincts, and not done it. I let myself get swayed by the opinions of other people. I guess the one good thing about this whole thing is that I do know now for sure that I was right and that I can trust my instincts when it comes to what I can handle. But I wish it hadn’t come at the expense of this wee cat. I let her down, and I let the people at the shelter down, they were so happy to see her be re-homed. I feel absolutely sick about what I put her through. I also let myself fall for this cat, and now I don’t have her. My house feels empty, and so do I.

I might try again one day, but only if my ME has improved significantly, and only once I’m living in a larger house with a spare bedroom that can contain the cat during the settling in period. I will not put another cat, or me, through this again, not unless I am absolutely 100% sure about it. After my sleepless night with the cat here, and twenty four hours without eating due to my anxiety, I slept twelve hours the following night. I felt relieved the next day, but also really sad, because I missed her, I still do. I wanted to keep her so much. Even if I’m well enough one day to try again, it won’t be the same cat, and she really was something very special.

This has been yet another reminder of just how unwell I am and how much ME is depriving me of. Usually when I test the waters and overdo it, the impact is only felt by me, but this time it wasn’t just me who was affected, an innocent cat was too, and the guilt I feel for that is enormous.

Do you want a cat?

If anyone reading this (who can easily get to the Edinburgh area) has been thinking of re-homing a rescue cat, and likes the sound of this wee cat, please get in contact, which you can do here. I can send you a photo and let you know where you can find her. But please be sure you can absolutely give her a home for life. Please be a better cat mum or dad than I am.

Also, please, if your first instinct is to try and give me after-the-fact advice on how I should have handled it, please don’t, that is not helpful. It’s done, I made the right decision, I feel utterly crap about it, but I don’t regret it.

 

Update! After I returned her, the shelter made her their ‘featured cat’ on their website. This extra exposure worked and she has now found her new home!

 

NEWS

Third Force News. If the government won’t take ME seriously who will?

http://thirdforcenews.org.uk/blogs/if-the-government-wont-take-me-seriously-who-will

BBC News. ‘My robot makes me feel like I haven’t been forgotten’

https://www.bbc.co.uk/news/business-45332710

Health Rising. “The Great Chronic Fatigue Syndrome Community Gene Study” Breaks New Ground

https://www.healthrising.org/blog/2018/08/31/the-great-chronic-fatigue-syndrome-community-gene-breaks-new-ground/

Simmaron Research. Autoimmune Model Proposes Chronic Fatigue Syndrome (ME/CFS) Begins in the Gut

https://sable.madmimi.com/c/16005?id=2664349.9251.1.afed89af2c5944b820ed11f96d038343

Health Rising. Mission Accomplished! (????) Feds Terminate the Federal Advisory Committee on Chronic Fatigue Syndrome (ME/CFS)

https://www.healthrising.org/blog/2018/09/09/cfsac-termination-chronic-fatigue-syndrome/

CommonSpace. SNP MP brands UK Government ‘reckless and heartless’ as figures reveal nearly £200m spent fighting disability benefit appeals

https://www.commonspace.scot/articles/13186/snp-mp-brands-uk-government-reckless-and-heartless-figures-reveal-nearly-200m-spent

Chronic Illness Inclusion Project. It’s not ME, it’s you – can the chronically ill embrace the social model?

https://inclusionproject.org.uk/social-model/its-not-me-its-you/

Northwest Functional Neurology. Netflix “Afflicted” Ep. 2 Doctor Speaks Out

http://northwestfunctionalneurology.com/netflix-afflicted-doctor-speaks-out/

The Guardian. Sorry, Netflix: we don’t need another freak show

https://www.theguardian.com/society/commentisfree/2018/sep/18/sorry-netflix-we-dont-need-another-freak-show

Medium. Open Letter to Netflix Regarding the “Afflicted” Docuseries 

https://medium.com/@afflicted/open-letter-to-netflix-regarding-the-afflicted-docuseries-d2b5263c9eb6

Post Twenty Six. How Having ME Has Affected My Mental Health.

I would like to warn you that this post may be triggering to those who have experienced suicidal thoughts.

I feel like this post is a bit all over the place. I’m currently struggling to put my thoughts in order, and I keep going back for further edits. I have so much to say, and so much I’m scared to say, but I feel that it’s important to be honest about how having ME really affects me. I often feel I’m a failure for succumbing to depression since having ME, but the more I share, the more I hear from others who are in the same situation, and that makes me feel like I’m maybe not quite so crazy after all.

I’ve become used to sharing details about my life with ME, and I want to become used to sharing details about my depression and anxiety too. They all have stigmas attached, they needn’t and they shouldn’t, but they do, and the only way I can see to remove the stigmas attached to these illnesses is to normalise them, and that means talking about them, and how they affect me. I love what Geroge Monbiot said in a recent-ish article in The Guardian about his prostate cancer diagnosis…

“There are, I believe, three steps to overcoming fear: name it, normalise it, socialise it. For too long, cancer has been locked in the drawer labelled Things We Don’t Talk About. When we call it the Big C, it becomes, as the term suggests, not smaller, but larger in our minds. He Who Must Not Be Named is diminished by being identified, and diminished further when he becomes a topic of daily conversation.”

I love that, “name it, normalise it, socialise it.”. I think that can be applied to ME, depression and anxiety, and any stigmatised illness. The attached stigma, the misunderstanding, the shame, the mystery, will diminish when it becomes a topic of daily conversation. So I plan to do that, here and in person, no matter how uncomfortable people are to hear it.

It’s not at all uncommon for people with ME to develop depression and/or anxiety. I always feel quite amazed when I hear from someone with ME who hasn’t had it impact heavily on their mental health. I would be one of those people if I could. But just as I can’t ‘just stop’ having ME, I also can’t ‘just stop’ having depression or anxiety. This seems to be a difficult concept for some people. They can say they understand, but then their lack of understanding can jump out at me during conversation. When talking to people about how my depression or anxiety is affecting me, I’ve been told “you just need to not let it upset you” or “you just need to stop worrying about that”. But would the same people say, about my ME symptoms, “you just need to not let that migraine hurt your head”? I don’t think so. ME gives me symptoms. Depression and anxiety also give me symptoms. That’s how it is.

Right now, one of my main obstacles (symptoms) is, what I call, the nervous dread. It’s the feeling of fear that I often get, and is the exact same feeling that I had as a child when I woke up terrified after a nightmare, except now, the nightmare is my life, and the feeling can last for days at a time. What comforted me as a child, when I woke up after a nightmare, was to crawl into my mum and dad’s room, make a little nest on the floor with my quilt and go to sleep there. That helped me because I knew I was safe, that I had someone looking out for me and that I wasn’t alone. This feeling of dread is often how my anxiety and depression manifests, and I (and my counsellor) believe that it basically stems from the same place, the fear of being alone, forgotten or abandoned. I don’t just mean the literal isolation that I live in, or the fear of being abandoned and forgotten by the people in my life, although that affects me deeply too. I’m also talking about the general lack of understanding about ME as a whole –  the lack of funding for biomedical research, the lack of support from our healthcare providers, the lack of recognition by our governments and our media that ME is a serious, disabling and life-threatening illness – this too all makes me feel abandoned and forgotten, invisible.

It’s not just ME, depression and anxiety are vastly misunderstood illnesses too. I used to be one of the people who didn’t fully understand depression, but I’ve never disbelieved anyone. When someone told me how their depression affected them, I can’t say I always understood it, but I believed them, because why on earth would someone lie about that? I’ve had people confide in me about suicidal feelings, before I ever felt such things myself. The first time I had no idea what to say, I just had to wing it, I sensed that my friend needed to talk, so I let them talk. I think, I hope, I handled it sensitively. I always think about what my words mean to others, I never want my words to hurt anyone. Importantly, I didn’t tell them how they should be feeling. I never tell people what they should feel, people tell me what I should be feeling, a lot. When I tell people about my fear of never being well again, for example, I’m told I should be more positive and feel hopeful. Why? Why, for a moment, can I not just feel what I feel? Are people with incurable illnesses, who are unable to live the life that they want, who have had everything stolen from them, never allowed to feel despair, or grief, or sadness, or frustration, or anger? Sometimes it seems, apparently not, and when we do, we must keep it to ourselves.

I have a huge amount of fear about never being well again. I do not want to live the rest of my life as I am now. Most of the time I keep it to myself, but sometimes I want to talk about it, and cry about it, I want to be able to talk about what scares me. But more often than not I’m met with ‘but there will be a breakthrough one day’ or ‘they will find a cure’. Really? You know that for sure? You’re 100% certain about this? The fact is, not all illnesses have cures. Not everyone who gets ill, gets better. People die from illness all the time, sometimes quickly after an aggressive illness, sometimes slowly, after decades of a malingering chronic illness. To reach some sort of acceptance about my life with ME, I need to accept all the possibilities, and one of them is never getting better. To be shut down when I try to talk about this only adds to my isolation, and loneliness, and as a result, my depression worsens.

When people insist that I will get better, it can be really hard to hear, it makes me feel so much pressure, because if I don’t get better, then somehow it must be my fault. I would love it if people, when saying this, would also acknowledge, in the same conversation, that I might not get better. Being hopeful is fine and good, but also be realistic, acknowledge my life, don’t erase me, my suffering or my fears. No one knows if I will recover or not, no one. It’s entirely possible that I will not, and when I talk about that, it’s my attempt to try to normalise it, to accept this, it doesn’t help to then be shot down. Once I’ve accepted it, then I can work on making my life, as it is, as meaningful and fulfilling as possible. I cannot spend my life clinging on to a potentially false certainty that a cure will be found, because if that doesn’t happen, I won’t be able to handle the devastation. I’d much rather learn to live my life, as it is, as well as possible, and one day, hopefully, maybe I’ll be surprised with the news that there is a cure, or a treatment that works, but I cannot pin all my hopes on that, it’s simply too much pressure for me to cope with.

How I feel (mentally) is often, unfortunately, and unhealthily (I think), at the mercy of other people. My illness has caused a lot of the people in my life to drift away. I’ve been left with very few people I feel close to, and I’m constantly worried about losing them too. Because of my anxiety, and due to living in this bubble, with too much time to think, any perceived (by me) slight from one of these people is magnified by a million, I obsess over it, to a scary degree. If I extend an invitation to someone to visit me, for example, and it’s ignored, the reasons why will consume me. My paranoia will take hold and it will eventually lead me to a very dark place. But it is important to state that no one is responsible for me feeling like this, it’s not even me, it’s the illness. I don’t want anyone to feel they have to distance themselves from me, for fear of triggering my mental health problems. My depression and anxiety will find a way, when they want to, and they often do pop up with no obvious trigger whatsoever.

People are also what I need, when I’m at my lowest, in order to survive. I can’t speak for everyone, but, there’s this myth that you can’t speak about suicide to someone who has suicidal feelings. Like, if you mention it, it will suddenly give them ‘ideas’, but the thing is, those ideas are already there. The word ‘suicide’ itself, does not make me suicidal. I only feel that way when my depression is at its worst, at the moment, it’s happening roughly twice a month (I think severe PMS may play a part). The rest of the time, I can feel low, without feeling actively suicidal, but I do spend a lot of time thinking about my own death, and hoping for a natural death, my escape from ME. When I am thinking about doing it myself, and wishing I had ‘the guts’ to do it, it becomes overwhelming, and what helps me get through it, is talking about it, in that moment, that’s what generally diffuses it. Sharing how I’m feeling, however ugly, scary, upsetting or uncomfortable, with someone who cares about me, whom I trust, who can make me feel less alone, is what helps me through it. I think people worry that they won’t know how to respond, that they won’t have a solution, that they won’t know how to ‘fix me’. But they don’t need a solution, I’m not asking for a solution, or to be ‘fixed’. Just be there, just listen, just let me talk about how I feel, tell me you’re here for me and that I’m not alone, let me cry, let me feel I’ve been heard, tell me that what I’m feeling is ok and that you understand. I need people who will willingly give me their time, who will accept me and all the elements of my personality that make me ‘me’, people who can be patient with me, especially if I need to go over and over the same conversation, people who can be kind to me when my depression and anxiety are making me be unkind to myself.

Ultimately I try to remember that when I feel this way, I must not make a permanent decision based on what is likely a temporary feeling. With that and the fear of it going wrong and ending up worse off, and the thought of someone having to find me afterwards, is what has stopped me so far. But it’s an incredibly painful battle each time, it’s the worst thing I’ve ever experienced in my life.

What I just said about needing people to accept me and all of the elements that make me, ‘me’. This would include not telling me, when I’m in a pit of depression or an anxiety spiral, that I’m ‘too sensitive’, for example. I am a sensitive person, but I’ve come to learn that that’s not a bad thing. I’ve grown up with people telling me that I’m ‘too sensitive’, and it’s always come across as accusatory, or derogatory, so I used to think it was something to feel ashamed about, that it made me weak. But this is actually a really important part of who I am, and I wouldn’t change it. I’m able to tune into and understand my feelings, and it helps me tune into the feelings of other people too, it’s what gives me empathy. I would like it if this sensitivity didn’t impact as heavily on my anxiety and depression as it does, and this is something I am working on with my counsellor. For example, I’m very sensitive to how my actions affect others, when I find out that I’ve hurt someone, it hurts me, deeply. My anxiety will then take hold of me, I’ll agonise over it for days, weeks, months or years (I can still feel anguish over things that have happened decades ago), and it won’t let me move on until I have resolved it. It’s exhausting, it prolongs the upset, it keeps my body in a constant state of fight or flight, and that impacts heavily on my ME symptoms.

I asked my counsellor recently, in desperation, how I could stop letting things that upset me, upset me. This led to a conversation that actually resulted in me feeling a lot better about who I am. I can’t just change the things that make up the elements of who I am, and I certainly wouldn’t want to erase my sensitivity completely, not if it meant losing my empathy. I like empathy. I think it’s a highly admirable quality, and it’s the quality I value the most in others. I’m not suggesting that I’m better than anyone else, or anything. But I have always considered what my actions, or my words might mean to another person. One of my faults is that I tend to expect the same from others, and I judge them for not living up to my high standards, and the only person who gets hurt by that, is me.

Anyway, It’s not surprising how frequently people with ME develop depression and/or anxiety. We’re grieving for everything that we’ve lost, and the grieving process works the same way whether it’s due to the loss of a loved one or the loss of your health. I’ve grieved for people, I know what that’s like, I still feel pangs of grief when I think about my dad. When it’s unexpected, like when I come across an old photo, or I have a dream about him, I get a jolt of emotion that rushes through me, often picking up other memories and feelings on the way. I can think I’ve been doing ok, in terms of my dad grief, but I can very quickly turn into a panicked sobbing wreck when triggered unexpectedly. And he died ten years ago (it was ten years on 4th June). I’m still a newbie in the ME world, four years in, and I’m still very much dealing with the loss of my old life, and the loss of everything that I thought my life could become. I can be having an ok day, where, despite the sheer shittiness of my illness, I can be feeling fairly calm and content with what little I have. But then, BAM, something comes along that triggers the grief and throws me off course. I’m talking panic attacks, hyperventilating, the nervous dread and when it becomes too overwhelming, and when I feel that I’m dealing with it alone, suicidal thoughts. Sometimes the grief makes me curl up into a ball and just cry and cry, sometimes I just want to tear the room apart with pure rage and anger, sometimes it just renders me numb, flat, completely emotionless, and sometimes it makes me want to die.

For a while I really thought I was doing so much better, in terms of accepting my illness. But I’m not doing well, not at all. It’s kind of been compounded recently due to the payback I’ve been suffering since Iceland and also with my current PIP (Personal Independence Payment – a UK disability benefit) application. At the moment I’m trying to cope with the knowledge that this particularly bad relapse is probably due to my own decisions. The trip to Iceland to see Sigur Rós, going to my mum’s house for three hours to spend time with my family for a belated Christmas celebration only four days after returning from Iceland, then the screening of Unrest just thirteen days after that. The trip was at the end of December, and I still haven’t returned to my pre-Iceland levels of ME, and I don’t know when or if I ever will. Some ME relapses are permanent, and right now, I’m trying to deal with the fact that I may have done this to myself. This has caused what I can only describe as a shitstorm of emotions and symptoms; grief, anger, guilt, hopelessness, anxiety spirals, panic attacks, and suicidal thoughts. All of this emotional over-exertion of course impacts on my ME, and causes those symptoms to worsen. When this happens I wish I could talk my way out of it, but I just can’t. It’s actually entirely rational, to grieve over the loss of ones own life, whilst still being alive. I do believe that feeling these feelings will help me on my way to acceptance, more so than repressing them anyway.

My PIP application. I’ve put this off since 2015, my first attempt was just so traumatic, but I need the money, and I am eligible, it’s just a matter of convincing the people at the DWP. I haven’t received the ‘How your disability affects you’ form yet (I requested it two weeks ago) but in the meantime I have been preparing for it. This means I’ve spent a lot of time thinking, in depth, about how my illness affects me, which is the exact opposite of how I usually try to cope with this. I’ve lost my independence and my freedom, I do not live my life as I want to, I don’t even live where I want to. My entire life is now entirely about compromise and adaptations, based around my ME. I’ve made so many adjustments to my life in order to manage my illness. I’m used to the fact that I now only wash once per week, rather than once per day, as I did pre-ME. I’m used to the fact that I only eat twice per day, rather than three times per day, as I did pre-ME. I’m used to the fact that I can’t leave my house every day, as I could pre-ME. My day-to-day life is now built around my limitations, and sometimes, I feel quite proud of the way I’ve adapted. My life now, while completely unrecognisable when compared to my pre-ME life, is simply, my life. It is what it is. But now, as forced by my PIP application, I have to really think about how my illness affects me, and not in a ‘I’m proud that I’ve adapted’ kind of way, but in a ‘bloody hell this is thoroughly depressing, my life is total shit, I can hardly do anything anymore’ kind of way. I used to manage sixteen hours of non-stop activity during a day, now I struggle after fifteen minutes of activity. My capacity for doing stuff is now around 10% of what it was before I was ill. When writing it down for my PIP form, and explaining why I can only wash once a week, and how it affects me, it’s nothing to feel proud of, it’s depressing. When I write about why I can only prepare two meals per day, it’s depressing. When I explain why I can’t leave the house every day, it’s depressing. I expect this has a lot to do with the current state of my depression.

I mentioned the isolation. This is a huge factor in the state of my mental health too. I’m an introvert, I enjoy my own company and before ME came along, solitude was a choice for me, a luxury, even. But my depression and anxiety have turned me into someone who fears to be alone. When I get this nervous dread, I panic at the thought of having a day without human company. But I also have severe ME, so I don’t have energy to interact with humans every day, when I do, my ME symptoms worsen. So it’s a constant unwinnable battle between my ME and my mental health. Even with my introverted tendencies, I/humans need interaction with other humans, real life interaction. Social media is great, but it doesn’t compensate for the lack of real people in my day-to-day life. Add in the fact that I spend my days in the dark, because I’m sensitive to light. I also spend my days in an artificial silence, always wearing either noise cancelling headphones or ear plugs, because I’m hypersensitive to noise (and I currently have some rather loud neighbours, human and canine). I’m either huddled alone in bed, or alone on the sofa. Maybe I could cope with it a bit better if I could get lost in a book, but I have brain fog, I can no longer follow a story line, I can’t retain or process new information. I tried audio books but I can’t cope with them either, I simply don’t possess the required levels of concentration, my wreck of a body cannot produce the energy needed. Who knew, before I had ME, that reading, something I did every day, getting through roughly one novel per week, could one day be an impossibility. I have loads of TV shows and films in my Netflix and Amazon Prime watch lists, but at the moment I can only watch what I’ve seen before, because I can’t keep up and follow new story lines. I have a few TV shows that I keep on reserve for easy watching –  Grey’s Anatomy, The Big Bang Theory, 24, Parks and Recreation, Gilmore Girls, Little House On The Prairie, Gossip Girl, Friends… Re-watching these shows, as well as helping me to pass the time, I find it comforting, the familiarity of the characters. It’s the closest thing I have to going to work with the same people every day.

I’ve mentioned before that I’m a member of Dignitas (a Swiss non-profit members society providing assisted/accompanied suicide to members of the organisation who suffer from terminal illness and/or severe physical and/or mental illnesses). Dignitas, for me, is a separate topic, it’s not about depression, I actually became a member before I had depression. It is not based on fleeting suicidal feelings or fluctuating depressive episodes, it isn’t a knee jerk reaction, it’s not something I can’t understand, it is not something that scares me. Even when I’m feeling at my best, both in terms of ME and my mental health, Dignitas is still an option, and a rational option at that. If I decide to go this way, it will be based on rational and careful thought and discussion with my GP and counsellor. I won’t even get the provisional green light from Dignitas if they don’t trust my decision and believe me to be of clear and rational mind. Knowing that that Dignitas is there gives me comfort. The application process is daunting though, in terms of the paperwork, and it’s expensive. Just to make the initial request, that may be turned down, costs over £2000. Some people make that request and pay the money, get the provisional green light, but not follow through. Apparently, gaining that initial green light, can provide an additional layer of comfort, that allows people to keep going, knowing they do now have that option. That might be an option for me too at some point. I do think, when/if the time comes that I simply do not want to carry on with my life as it is, Dignitas is a much better option that suicide by my own hand, and so much easier on those who are left behind. Ideally, assisted/accompanied suicide will one day be legal in the UK, or Scotland, but I can’t see it happening anytime soon, the UK are rather behind, when comes to some things.

At the moment, in terms of ME, there is a feeling of potential change in the air. The film Unrest and the charity #MEAction have done so much for the awareness of ME worldwide. My mum attended the Invest In ME Research annual conference last week and heard some of the most prominent scientists in the field of ME research speak, she said there was a feeling of hope in regards to the current biomedical research. The NICE (The National Institute for Health and Care Excellence – the UK Department of Health organisation who provide guidance on the appropriate treatment and care of people with specific diseases and conditions) review of the ME guidelines is on the horizon, and will be completed by 2020. My fellow #MEAction Scotland volunteers met with the Scottish Parliament Petitions Committee today to discuss our recent petition (online and on paper we ended up with around 7000 signatures!) in which we are calling on the Scottish Government to review the level of support for people with ME in Scotland, in terms of biomedical research, education for healthcare professionals and specialist care for patients (the link to watch this is at the top of the NEWS section below). Some MP’s, including Carol Monaghan, recently put forward a request to the House of Commons Backbench Business Committee for a full debate about ME in the Main Chamber at Westminster. This has now (kind of) been granted, not for the Main Chamber, but for a three hour debate about ME treatment and research in Westminster Hall. Hopefully this will lead to a debate in the Main Chamber of the House of Commons in the Autumn.

So there are people doing things, and I want to feel hopeful, but so have the people who have been living with ME for decades, and seen no change. It is possible that biomedical research will find the cause of ME, to then find there is no cure. It is possible that the NICE review won’t in fact change everything, or they may change the guidelines for the worse. It is possible that the Scottish Government and Westminster will continue to neglect people with ME. We still have a long way to go and I want to be able to hang on, but I don’t know how long I’ll be able to. I don’t want it to, but I’m currently living knowing that my depression may one day ‘get me’. At the moment I’ve told myself I can’t go anywhere before the NICE review in 2020. I like to give myself a date, something firm in the diary to cling on to. The NICE review might just change things for the better for people with ME in the UK, and I at least need to live to see what happens there. Hopefully by then, I’ll have found something else to live for, I’ll have managed to find meaning in my life, I’ll have found somewhere to live that makes me happy, comfortable and settled (and with less need for noise cancelling headphones), and hopefully I can keep that going, and keep pushing back that date in my diary, at least until I’m an old lady with lots of cats.

When I do die I want my body to be utilised for ME research. If you live in the UK, this is how you can help progress ME research after you die. The ME Association is the only ME charity involved in the collection of post mortem tissue samples from people diagnosed with ME/CFS in the UK and their aim is to establish a national ME/CFS Post Mortem Tissue Bank where greater numbers of samples can be collected and stored for vital research. Learn more here:

http://www.meassociation.org.uk/research/current-research/post-mortem-tissue-bank/

Follow these links to mind.org.uk to learn about depression and anxiety.

Depression

Anxiety

 

NEWS

The Scottish Parliament Public Petitions Committee hear evidence from Emma Shorter and Janet Sylvester of MEAction Scotland and Professor Chris Ponting, Chair of Medical Bioinformatics at Edinburgh University and Deputy Chair of the UK CFS/ME Research Collaborative.

https://www.scottishparliament.tv/meeting/public-petitions-committee-june-7-2018?clip_start=10%3A10%3A46&clip_end=10%3A55%3A21

Futurism. Scientists are now calling the link between depression and inflammation caused by a faulty immune system definitive. Whether it’s causal or not, the connection opens up new avenues for treatment, and new hope for sufferers. 

https://futurism.com/researchers-depression-may-be-a-physical-illness-linked-to-inflammation/

ME/CFS Research Review. A team led by Edinburgh University’s Professor Chris Ponting has won funding for a PhD student who would follow up and expand on remarkable recent findings made at Stanford University, where Dr Mark Davis may have pinpointed a major issue in the immune system in ME/CFS.

https://mecfsresearchreview.me/2018/05/31/a-plan-to-replicate-mark-daviss-remarkable-findings-of-immune-activation-in-me-cfs/amp/?__twitter_impression=true

The ME Association. Inquest Ruling: Young drama student Merryn Crofts killed by ME.

http://www.meassociation.org.uk/2018/05/inquest-ruling-young-drama-student-merryn-crofts-killed-by-m-e-18-may-2018/

The Times. ME sufferer who was dismissed as hysterical vindicated in death.

https://www.thetimes.co.uk/article/me-sufferer-merryn-crofts-who-was-dismissed-as-hysterical-vindicated-in-death-lq9j2lc7w

Health Rising. The Migraine Drug Explosion Begins: Could Fibromyalgia and ME/CFS Benefit?

https://www.healthrising.org/blog/2018/05/19/migraine-drug-explosion-fibromyalgia-chronic-fatigue/