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 Three. This Is How We Become the #MillionsMissing, a New Project for 2019.

I have decided to undertake a project this year. I wanted to see just how isolated I have become since having ME, so, for the whole of 2019 I will be keeping a record of the time I spend in the company or vicinity of other people.

Why?

As well as satisfying my own curiosity, my aim with this project is to help others understand the extent of the isolation I live in. I want to help people understand just how severely ME limits my ability to interact, communicate with and be around people. I’ve explained before that ME is defined by a pathological inability to produce energy on demand at a cellular level. Unlike the common misconception, ME is not an illness that causes me to feel tired, it’s an illness that limits my energy production. I think most of the people I know can understand how this affects my ability to undertake various physical and cognitive activities, but I’m not sure they know just how severely it affects my ability to simply be around people. I have gone into this before, especially with my last post, Post Thirty Two. Some Things I’d Like My Visitors To Be Mindful Of., in which I explained how carefully I have to plan and manage the time that I spend around people. I think this post and this project as a whole tie in well with Post Thirty Two, but with this project, I’ll actually be able to show them just how drastically my reality has changed due to having ME.

What this project is not about.

Importantly, I want to be sure that people understand that the isolation I live in is not a choice I have made, it’s not because I lack ‘motivation’, nor is it caused by neglect. This project is not a reflection on any of the people in my life, it is not about lost or fading friendships or a lack of offers. I have lost friends, it’s true, but that is irrelevant to this project. I’m not lacking people, I don’t need to join a befriending scheme, what I am lacking is energy, I am simply too unwell to be around people.

This project is not about loneliness. I wouldn’t have the faintest idea how I could calculate the amount of time I feel lonely. It’s too subjective. How would I accurately log a feeling, especially one that comes and goes in waves? Of course I do feel lonely at times, sometimes excruciatingly so, but this project is about isolation, not loneliness. The results of this project will say nothing about how often I did or did not feel lonely in 2019. It is not a project about my emotions, I have no interest in doing that.

It’s not a scientific experiment, it’s a personal project. My counsellor likened it to more of an evolving art installation, which I like the sound of.

How is this going to work?

To figure out how my current level of isolation compares with the time I spent in the company of people before I had ME, I came to a figure that I think represents an average month for me, pre-ME. I based this on the couple of years immediately before I became unwell, from 2012 – 2014.

First, let’s give you an idea of what my life was like in those pre-ME years, in terms of the time I spent around other humans. I worked full-time for a homelessness charity called Cyrenians. My job was based in a small depot in Leith, Edinburgh, with a small team of staff and many volunteers. I also lived in Leith and had a ten minute walk to and from work everyday. I owned a beautiful flat in the Shore area, a top/fifth floor tenement flat with ninety eight stairs to my front door, in which I lived alone. I attended classes at the gym pretty regularly, both Spin and Body Pump. My gym was also in Leith, just round the corner from my work. I also attended an evening class, wood carving, which was again, in Leith. I volunteered with another couple of homeless charities. I socialised with friends on a weekly basis, whether in the pub, a restaurant, a coffee shop, or at the cinema, a concert or the theatre. I also enjoyed spending time alone (but surrounded by people) – reading a book in a coffee shop, exploring museums and art galleries, and I liked to make use of Edinburgh’s many green spaces, Holyrood Park, Arthur’s Seat, Princes Street Gardens, etc. I spent time with my family – my two sisters, my mum and my niece and nephew, who I babysat for fairly regularly. To get around Leith I mainly walked, but to go to the city centre, or anywhere else, I would use the bus. I travelled as much as I could. In those couple of years before ME I especially enjoyed travelling around the UK to see my favourite bands – my favourite bands rarely came to me, so I had go where they went. By turning a concert into a short holiday I got to see parts of the UK I’d never been to before, including Manchester, Cornwall, Halifax and Brighton. I also spent time in London and Kent roughly once a year. I went to Iceland for the first time and I completely fell in love with Reykjavík, and have returned a few times since then. This was my life pre-ME, in terms of the activities I did that involved being with or around other people. It was fun and I was enjoying myself, and despite being an introvert, it was full of people, but perhaps more importantly, it was only full of people as and when I chose to be around people. I was afforded that luxury before I had ME, now my illness dictates when I can be around people.

So, I calculated that, pre-ME, I spent at least 253.4 hours per month in the company of other people. I broke it down as follows…

  • An 8 hour work day Monday to Friday, and 4 hours every fourth Saturday. I haven’t included any overtime.
  • I estimated 18 hours per week for the other activities in which I was in the company of, interacting with, or in the vicinity of other people, as described above.
  • I lived alone pre-ME and I still do, so my time spent around other people will automatically be lower than anyone who doesn’t live alone.

I plan to write a blog post with the results of this project early-2020, or I might coincide it with International ME Awareness Month in May 2020, but I thought I would give you a sneak peek at January’s data.

img_1101
The total time I spent with or around other people in January 2019 was 22 hours. Of this time, 7 hours and 5 minutes were outside of my home.

So, as you can see, I have created categories for each person/set of people – my mum, who is also my carer, other family members, friends, medical, counselling, acupuncture, my cleaner, The Super Store (a shop between my house and my counsellor’s office) and the Sainsbury’s delivery man (for non UK readers, Sainsbury’s is a supermarket).

Each of January’s categories in more detail. 

My mum/carer – 16 hours

It’s important to note that when my mum visits me, it’s not always a social visit, these 16 hours include the time she spends doing various jobs for me around my home – washing my dishes, unpacking groceries, changing my bedding, filling my pill boxes, emptying my bins, etc. So when she’s here for an hour, possibly only half of that time will be spent in conversation. When I’m not feeling well enough for a proper visit she will leave after having done whatever jobs I need doing. So sometimes her visits will be as short as 5 minutes, if she’s only dropping off some shopping, for example.

Other family – 15 minutes

The 15 minutes of ‘other family’ time were when each of my sisters (one with her boyfriend and the other with my niece and nephew) attempted to visit me but I was too unwell each time, so could only have a quick hug/chat by the front door.

Friends – 0

I wasn’t well enough in January to see any friends or do anything beyond the essential (medical, counselling, my mum’s visits etc).

Medical – 1 hour

I had an appointment at Borders General Hospital in January. I have included the time spent in the waiting room. This entire outing took 3 hours, with around 1 hour, maybe a bit longer, being for the actual hospital bit, the rest being the time it took to get there and back. My mum drove me, so I included the travel time in the ‘mum’ category.

Counselling – 3 hours

My counselling appointments are 50 minutes long, but I’ve rounded it up to 1 hour, to include the time I spend walking there and back. This may seem insignificant, but my walk to and from counselling, even though I’m not interacting with any of the people I pass on the way, is the time of the week I feel the least isolated. It’s not just because I can see the other people, they can see me. I’m present, I’m not invisible, I’m out there, existing, not only in my life, but in the lives of the strangers who walk past me on the street. I would compare this to the time I spent walking to and from work, or the gym, or my evening class, or on the bus to and from the city centre in my pre-ME life. This is time spent in the vicinity of other people, but not interacting with them.

Acupuncture – 1 hour 20 minutes

My acupuncture appointments are in my home, roughly every two or three weeks. The actual acupuncture session is 30 minutes, but of course it takes a few minutes to update the acupuncture man with my symptoms since last seeing him and for him to put the needles in, so I log each acupuncture appointment as 40 minutes.

Cleaner – 15 minutes

My cleaner comes round when I have my counselling appointments, and I include the 5 minutes I spend chatting with her before I leave for counselling. Because I can only manage one ‘outside’ appointment per week, if I have a medical appointment, I will cancel that weeks counselling appointment. On those days, when I don’t have counselling, but I still have my cleaner round, I’ll retire to my garden shed to get out of her way, which is nicer than it sounds, my shed is quite lovely.

The Super Store – 5 minutes

The Super Store is a small health food shop just round the corner from my house. I don’t go in often, only occasionally when I’m passing on the way home from counselling, and when I do, I always feel noticeably worse the following day, so I really shouldn’t. I usually have my mum buy what I need from this shop, but sometimes it’s nice to go in and browse and do my own shopping, as though I’m an independent adult.

Sainsbury’s delivery man – 5 minutes

Finally, I included the short time I spent in the company of the Sainsbury’s delivery driver. It might not seem worthy of including, but if I haven’t seen anyone for a few days, those few minutes of interaction can make all the difference.

Outside

Of the total 22 hours I spent in the company of other people in January, 7 hours and 5 minutes of that time were outside of my home – this includes my one medical appointment at Borders General Hospital and the time it took for my mum to drive me there and back, my counselling appointments, and one 1 hour drive with my mum for a change of scenery. This 7 hours and 5 minutes isn’t just the only time I spent outside of my home around other people, but the only time I spent outside of my home in January full stop. This is why I describe myself as ‘mainly housebound’, as opposed to simply ‘housebound’, many people whose ME is more severe than mine are unable to leave their homes, or even their beds, at all. I don’t include the time I spend in my garden as being ‘outside’, I count that as being at home.

Some percentages. 

If the online percentage calculator I found was right (with my ME foggy brain I am not even going to attempt to work out the percentages myself), this means that I spent 91.31% less time in the company of other people in January than I did per month before I had ME.

The pre-ME figure of 253.4 hours was spent mainly outside of my home, so this means that the time I spent outside of my home in January was reduced by 97.11%, when compared to my pre-ME life.

On average there are 730 hours in a month, so based on January’s data, in which I spent 7 hours and 5 minutes of it outside of my home, I am 99% housebound.

I look forward to seeing how these percentages differ as each month passes.

What’s next.

I plan to write a blog post in 2020 with the results of this project. I don’t know yet how I will present the information, what observations I’ll make or what conclusions I will draw. It will be an evolving project, what seems important to me now may not seem so important when it’s time to bring all the information together, and I will add new categories as and when I need to. Hopefully the end result will be of some value, but even if it’s not, it’s a good excuse to play with spreadsheets and percentages, which despite being cognitively draining, I really enjoy!

About the title – This Is How We Become The #MillionsMissing.

I was given the idea for the title of this project by @JBKid7 on Twitter. When I shared my idea for the project with my January stats, @JBKid7 shared it with the caption “This is how ME affects us. This is how we become the #MillionsMissing.”.

If you don’t already know, #MillionsMissing is a global campaign for ME health equality. Lead by #MEAction, the first global protest/demonstration took place in May 2016 and has since grown each year to an astounding 100+ cities and virtual protests in 2018. We protest around the world for increased government funding for research, clinical trials, medical education and public awareness. Most people with ME are too ill to attend the demonstration so they send in shoes with a label summarising their story to symbolise their support. The empty pairs of shoes are displayed at the protest as a striking visual image of the #MillionsMissing.

The name #MillionsMissing symbolises the millions of people with ME who miss out on everyday life, and the millions of pounds missing from biomedical research into this devastating illness. In terms of missing out on everyday life, I thought this would be the perfect title for my project. There are approximately 17 million people with ME worldwide, 250,000 of them here in the UK. That’s a lot of people missing out on everyday life. We are the #MillionsMissing.

 

NEWS

Health Rising. Metabolomics Study Suggests Chronic Fatigue Syndrome May Be Oxidative Stress/Low Oxygen Disease

https://www.healthrising.org/blog/2019/02/08/metabolomics-chronic-fatigue-syndrome-oxidative-stress-low-oxygen/

Frontiers. Onset Patterns and Course of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

https://www.frontiersin.org/articles/10.3389/fped.2019.00012/full

PLOS Blogs. Consumer-Contested Evidence: Why the ME/CFS Exercise Dispute Matters So Much

https://blogs.plos.org/absolutely-maybe/2019/02/08/consumer-contested-evidence-why-the-me-cfs-exercise-dispute-matters-so-much/

Bustle. How To Find A Doctor When You Have ME/CFS, Because The Process Can Be Challenging

https://www.bustle.com/p/how-to-find-a-doctor-when-you-have-mecfs-because-the-process-can-be-challenging-15536013

Virology Blog. Trial By Error: HRA Report Does Not Vindicate PACE

http://www.virology.ws/2019/02/06/trial-by-error-hra-report-does-not-vindicate-pace/

White House Chronicle. The Deadly Hurt of Loneliness — It Kills

http://whchronicle.com/the-deadly-hurt-of-loneliness-it-kills/

Springer Link. Myalgic encephalomyelitis or chronic fatigue syndrome: how could the illness develop?

https://link.springer.com/article/10.1007/s11011-019-0388-6

 

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