Post Twenty One. The Wheelchair Has Arrived.

So, the much anticipated wheelchair has arrived!

It was delivered mid-November by a very nice engineer who unpacked and put it together for me, and he gave me some basic instructions, how to use the joystick, how to charge the batteries, how to fold and unfold it etc. He also made me sit in it. This was the very first time in my life that I have sat in a wheelchair, and I was pleased to find that it wasn’t as scary as I had imagined, it didn’t feel wrong, weird, or foreign. It actually felt fine, and for a travel wheelchair, it was surprisingly comfortable.

There was however a downside. I learned that despite it being the lightest electric wheelchair in the world, it is too heavy for me to lift. This means I am unable to fold and unfold it myself. It’s around 20kg, I could easily lift 20kg before I had ME, but I guess I hadn’t quite realised just how weak I had become, or maybe I was in denial. I have tried to practice folding and unfolding it, and if I really force myself, on my ‘better’ days, I can just about manage, but only by severely over-exerting myself. So this was a huge blow, and I did feel disappointed. It means that the wheelchair won’t provide me with quite the level of independence I had hoped for, given I will be relying on others to lift, fold and/or unfold it for me. But, there’s nothing to be done about that, a lighter model does not exist, so there’s no point crying over it. The wheelchair will still provide me with the opportunity to get outdoors a bit more, and to bits of the world that have, since I’ve been ill, been inaccessible to me, and that is what matters.

It took a while before I felt well enough to get outside for a test drive thanks to a nine day migraine and being generally very unwell recently. So my first outing was around ten days ago, I went to Whitestone Park, which is very close to my mum’s house.  These are some things that I learned…

Going downhill is scary.

Going uphill is just about manageable, but uses a lot of battery power.

Smooth surfaces are a joy.

Bumpy/uneven surfaces are less good.

Grass is an absolute no no.

Pavements with a camber, that slope down towards the road are not good. Not unlike a shopping trolley the wheelchair kept veering to the side, towards the road. I learned that by almost flying onto the road. Luckily my quick reactions stopped me from potentially being flattened by a massive lorry.

I did feel nervous about passing any pedestrians, thankfully the only people I saw smiled at me. But it is a small friendly town, so they probably also would have smiled had I been walking. At least I hope so, I don’t want ‘pity’ smiles.

What surprised me was just how exhausted I felt afterwards. I was only out for half an hour, but I was shattered and the payback was pretty severe. It took a week before I felt well enough to have another practice.

The second practice was a few days ago…

I began in my mum’s garden, testing how it handles on a light dusting of snow. The makers of the wheelchair do advise that it should never be used on snowy or icy surfaces, but on the smooth paving slabs in my mum’s garden, with a little amount of snow, it managed fine.

It does not like gravel, it stubbornly refused to move while the spinning wheels dug holes in the ground.

I was reminded that it really does not like bumpy surfaces. The pavement in front of my mum’s house, I had thought, counted as a smooth surface. I suppose I never paid much attention when I was on foot. But the wheelchair did not like it at all. Again, it wanted to veer off onto the road. I had to take it incredibly slowly, and I really felt like I was pushing the wheelchair out of it’s comfort zone. It was also really uncomfortable for me, as my skeleton got a good shoogle, as I bumped along the uneven pavement. It struggled even more as the pavement turned an uphill corner. I ended up having to get out of the wheelchair, switch it into manual mode and push it round the corner and up the first section of the hill. Realising that going up this hill, with it’s very bumpy pavement, with a coating of snow was not going to happen, I went down into the grounds of a nearby hotel instead. Again the surfaces here were really uneven and pot-holey, I had to give up pretty quickly, and pushed the wheelchair back to my mum’s house, it was hard on my arm muscles, but it gave me something to lean on, like an incredibly expensive zimmer frame.

So that’s been my wheelchair experience so far. The first outing was definitely a success. Whizzing along the paths in the park and ending up next to the river was wonderful. Without a doubt I was able to travel further than my legs would have safely carried me. The second outing was disappointing, and I felt quite low afterwards. But I did learn something, it was educational, so therefore still useful.

My health has been really poor recently, especially with my marathon migraine. I’ve also had some emotionally draining situations to cope/deal with, completely unrelated to the wheelchair, but this too takes a huge toll on my ME symptoms. It has been a source of anxiety for me that I haven’t been able to practice with the wheelchair as frequently as I would like. Understandably I have lots of people asking me how I’m getting on with the wheelchair. And I have to respond, to the people who paid for it, that so far I’ve only had one, or two outings in it. This leaves me with a lot of guilt. That I’m letting these people down, and not giving them their ‘money’s worth’. On my second outing I began to panic and thought I would need to offer everyone a refund. My mum reassured me that the people who made contributions to my wheelchair fund did so for me, not for themselves, or their viewing pleasure. I do still wish I was able to use it more frequently, but like always, my illness dictates everything.

I think this is a good time to remind people, and myself, of something. Having the wheelchair has not cured my ME, and has not suddenly given me more energy. It will allow me to go outdoors more frequently. But these outings will take place on the days that my mum would have otherwise visited me. So I’ll be doing pretty much the same amount of activity, in term of duration, but now, some of that activity will be able to be outdoors, rather than in my home. That, is how this wheelchair will change my life. I also have to accept that I’ll get less use of it during the winter, while it did manage ok in my mum’s garden on a small dusting of snow, I do know better than to experiment with it in deep snow, or on a sheet of ice. I will also be limited to using it on smooth pavements and paths, and it’s only now that I realise how uneven many of the pavements are in this town.

Each outing in the wheelchair for the next few months will, I imagine, be a learning curve. But even finding out what it doesn’t manage, will be useful information to have. I also need to stop looking at the difference it will make through the eyes of a healthy, able bodied person. When I do, it makes me think I’m not using it enough. But actually, the difference it will make to my life, however small it might look to someone else, will be worthwhile, and will without a doubt improve my quality of life.

Thank you again everyone who made this possible. x

 

 

 

 

 

 

 

 

 

 

 

Advertisements

Post Twenty. Thank You For Funding My Wheelchair!

2017-11-08 (1).png

Claire, Stacey, Morag, Carola, Richard, Morag, Naomi, Kate, Gavin, Heather, Anthony, Nick, Paul, Jennifer, Lorna, Rebecca, Alan, Alison, Luca, Gillian, Kathleen, Ann, Bill, Gusia, Robert, Rhona, Seonaidh, Viv, Ian, Caroline, Ann, Gary, Morag, Robert, James, Jessica, Colin, Lorraine, Dot, Natasha, Christine, Kelly, Tony, Jennifer, Kathy, Clare, Kimberly, Angela, Phil, Richard, Clara, Agnieszka, Claire, Peter, Vikki, Sandy, Abigail, Emma and Anonymous Donors x 16.

Thank you so much everyone who helped me raise the money for my soon-to-be electric wheelchair. I’m completely overwhelmed by the generosity, support and encouragement I have received over the last few weeks. It’s been a really incredible experience.

Amazingly, I met my initial target of £2795 on day 12 of my campaign! It was so quick that I couldn’t even withdraw any of the funds yet!

When I set my target of £2795, I had been planning on covering the costs of the JustGiving fees (roughly 6.5% of the total amount raised) and the delivery fee for my wheelchair (£80) myself. However, some of my friends who had intended to make a donation, hadn’t been able to yet as they were waiting for payday. They asked me, after I had met my initial target, if they could contribute to these fees. So, taking this into consideration, I decided to increase my target to £3075. Which I then met on day 22! This means I now have enough not only to buy the wheelchair, a second battery, a travel bag/cover and three years of insurance, but it will also cover the delivery fee, and the fees deducted by JustGiving.

I have now withdrawn the funds and am just waiting for them to transfer to my bank account, which can take up to ten days. Then I’ll be able to contact Careco and order my new wheelchair!

Campaign began – Saturday 14th October 2017

I reached number 5 in the JustGiving Leaderboard! This means that only 4 other campaigns on JustGiving received more donations than mine in the previous 24 hours. – Sunday 15th October

Met first target £2795 –  Wednesday 25th October 2017

Met second target £3075 – Saturday 4th November 2017

I’m so grateful for every donation. This outpouring of support has been quite overwhelming, and it has meant so much more to me than simply being able to purchase the wheelchair.

As you may know from my previous post (Post Sixteen. Wheelchair Or Not?) I’ve been feeling very nervous about this wheelchair. While the sensible part of my brain tells me this will be good for me, the anxious side feels, well, anxious. It will, I imagine, take me some time to feel comfortable using in public spaces, such as Peebles High Street. While I get used to it, in terms of how it makes me feel, and how to operate it, I’ll be practising in less public places, and this will take as long as it takes!

I will also, as always, need to be careful about my overall use of energy. Having a wheelchair will not cure my ME. I will still only be able to go out, and use my wheelchair, when I feel well enough. This might mean only once a month, sometimes less, or sometimes more frequently. I do realise that it can be confusing for people to understand that I may not be able to undertake an activity that I managed to do a few days, or hours, or weeks previously.

Basically, my body has a pathological inability to produce sufficient energy on demand. Which means I have a limited amount of energy that I can use on a day to day basis. I have to pace myself and my activity, and be very careful to stay within my ‘energy envelope’, so to speak. Oh, and to make it even more interesting, my energy levels fluctuate, so I never know when I wake up how much energy I’ll have that day. If I over-exert myself, whether physical or mental exertion, and go outside my energy-envelope, that will cause a crash, which means my symptoms will worsen, and it can take, days, weeks, or months to recover. This worsening of symptoms after exertion is known as Post Exertional Malaise, which is the defining/cardinal symptom of ME. I really wish it had a better name though, ‘Malaise’ is so misleading, and really not very descriptive of the devastating destructive brutality of this symptom. I tend to refer to it as ‘payback’, because that’s what it feels like, like I’m being punished by my body for daring to live a little.

Now, if I were being very very sensible, I would only ever live within my energy-envelope, or my baseline, as it’s also sometimes known. In theory, if I stay below my baseline, I’ll be able to live with minimal symptoms. The problem is, life within my baseline is incredibly dull and boring, and it has done considerable damage to my mental health. I need more from life than what my limited envelope of energy allows.

There are also many things that use energy that are simply outwith my control, especially emotional stress. I can control the amount of physical activity I do, but I have no control over the things that I find upsetting, from the Tories persistent assault on the poor, vulnerable and disabled, to someone I love being in an accident, to my laptop dying. The resulting emotions, thought processing and communication required to sort these things out can also take me days, weeks or months to recover from. I’m also affected by sensory input; temperature, light, noise, smell and movement. No matter how well I control my environment at home, I cannot control the outside world.

So in a perfect world I would never go above my baseline. Even on my better days I’m meant to limit my activity/use of energy, and this is incredibly frustrating. It’s so difficult to suppress my natural instinct to be active, to go outside, to be sociable, and like so many people with ME, I tend to overdo it on my better days. This pattern, the overdoing it on the better days, then paying for it for days, weeks or months after, is known as ‘boom and bust’, and it’s what I should be avoiding. But like I said, this makes life so boring, too boring for me, and it’s that, along with the isolation that this life forces upon a person, that has damaged my mental health, and as a result I am now being treated for depression.

So anyway, this has been a really long way to explain why you won’t suddenly see me out and about every other day in my wheelchair, and also why you might see me only once every few weeks, maybe enjoying Dawyck Botanic Gardens, or Haylodge Park etc. For me, at this stage of my illness, I want to use the wheelchair to enjoy the places, mainly in nature, that have been inaccessible to me for the last couple of years. The wheelchair, will hopefully allow me to take in some of these places, every now and then, but not too often, without over exerting myself so much, that I’ll suffer for it afterwards. Also, please don’t be confused or alarmed if you see me walking! I can walk short distances, and by living right in the centre of town, this means I can walk, occasionally, to a nearby shop, or Costa, and to my weekly counselling appointments, which luckily, are very close to my home.

Something that I gained from this crowdfunding experience that I wasn’t expecting, was, it helped to take the edge off my fear of the wheelchair. I was so very moved, not just by the incredible generosity, but also the encouraging and supportive comments, that I actually began to feel excited. Everyone who donated has made this possible for me, and I feel like, it’s not just me anymore who is emotionally invested in this purchase, you are too, and I can’t wait to show you what you have paid for. One of the comments on my crowdfunding page said “I’ve been trying to find another little something to send you but instead I shall buy you a brake cable or a switch or something”. I love this! I love thinking that you can all decide which bit of the wheelchair you paid for. Obviously the brake cable is already spoken for, but there are four wheels, two batteries, the joystick, and all the others bits and pieces that hold it together and make it work, unfortunately some of you will be stuck with the insurance, which is kind of boring, but still necessary.

When I first set up my campaign, I never expected to reach my target, and I thought maybe only my mum and a handful of friends would donate. I’m so touched by every single person who made a donation. My family, my friends, my family’s friends, old colleagues, classmates from school and university and people I don’t even know. It’s so lovely that there are people who care enough to help out someone they’ve never met, unless we have met and I’m terrible and don’t remember! Although, being the daughter of two teachers from the local high school, and with a rather distinctive and rare surname, means that it’s possible some of these people know of me, or my parents, or my older sisters, and we do actually have some kind of connection. Or maybe they’re just dead nice people! Which of course, all of you are, whether you know me personally or not. The loveliest thing of all is knowing, and it took a friend to remind me of this, that “it’s proof, not that it was needed, of how much you are loved and cared about”. And this came at a much needed time.

I would also like to thank a few of our local media people.

Shortly after I set up my crowdfunding campaign I approached Kris Tatum at the Peeblesshire News. For me, it was more a matter of raising awareness of ME, which as I’ve said many times, is hugely misunderstood, (please read my last post for more info in regards to this Post Nineteen. Time For Unrest) than it was to get donations. But I was delighted to find that, after my story was published, I began to get donations from these lovely strangers I’ve spoken about. Shortly after my Peeblesshire News article was published I was contacted by Ally McGilvray at Radio Borders, who kindly publicised my campaign on air and on their website. Then, I was contacted by Sarah Frances at The Southern Reporter, who also very kindly featured my story.

You can read these here…

The Peeblesshire News

http://www.peeblesshirenews.com/news/15610306.Housebound_Peebles_resident__39_s_plea_to_get_her_life_back/

Radio Borders

https://planetradio.co.uk/borders/local/news/peebles-charity-worker-makes-plea-wheelchair-leaves-housebound-two-years/

The Southern Reporter

http://www.thesouthernreporter.co.uk/news/peebles-woman-smashes-wheelchair-fund-target-1-4601029

Thank you very much Kris, Ally and Sarah for helping to spread the word about ME, and of course for all the donations that were made as a result.

And lastly, thank you to JustGiving, who provided me with the platform that made this possible. Unbeknown to me when I set up my campaign, JustGiving help to spread awareness of the campaigns on their site. Sarah at The Southern Reporter was only made aware of my story when she received a press release from JustGiving! I find that quite remarkable, that someone at JustGiving made the effort to track down my local newspaper. Absolutely worth the fees they charge!

Now that I have managed to raise awareness of ME a little bit, I would very much like, if you would like to increase your awareness even further, to bring the film Unrest to your attention. Rather than going into it here, again I’ll direct you to my previous post, in which I kind of reviewed/shared my feelings after having watched it myself.

Post Nineteen. Time For Unrest.

If you like the sound of it, I’m delighted to share with you, that you (Peebles people) will be able to see it on the big screen at the Eastgate Theatre on Thursday 18th January at 7.30pm. Tickets are now available! If we can scrounge together enough people for a panel, including me, there might be a Q&A session afterwards! For non-Peebles people, you can find details of how/where to watch it, on the big screen or at home, in my previous post (Post Nineteen).

Thank you again everyone who supported me through my campaign. It means so much to me, and I’m forever grateful. I will update you all after the arrival of my fancy new wheelchair!

PS. If you would like a reminder of the wheelchair that you have funded, here you go…

 

Post Nineteen. Time For Unrest.

Unrest image.png

“A revelation and a call to action” – The Salt Lake City Tribune

“Riveting…equal parts medical mystery, science lesson, political advocacy primer and even a love story” – The San Francisco Chronicle

Jennifer Brea is an active Harvard PhD student about to marry the love of her life when suddenly her body starts failing her. Hoping to shed light on her strange symptoms, Jennifer grabs a camera and films the darkest moments unfolding before her eyes as she is derailed by M.E. (commonly known as Chronic Fatigue Syndrome), a mysterious illness some still believe is “all in your head.”

In this story of love and loss, newlyweds Jennifer and Omar search for answers as they face unexpected obstacles with great heart. Often confined by her illness to the private space of her bed, Jen is moved to connect with others around the globe. Utilizing Skype and social media, she unlocks a forgotten community with intimate portraits of four other families suffering similarly. Jennifer Brea’s wonderfully honest portrayal asks us to rethink the stigma around an illness that affects millions of people. Unrest is a vulnerable and eloquent personal documentary that is sure to hit closer to home than many could imagine.

I have been awaiting the arrival of this film for some time. It has been a few years in the making but I only found out about it after watching Jen Brea’s TED talk earlier this year. Having already been screened in other parts of the world, and winning lots of awards on its way, Unrest had its UK premier just a couple of weeks ago in London. For those of us too unwell to go to our closest screening, we had the opportunity to pre-order the film online, and patiently, or not so patiently, wait for the 31st of October, the day of its release.

On Tuesday I was finally able to download it and I watched it in stages over the following three days. What can I say…

It’s beautifully made.

It made me cry and it made me smile.

I felt validated. So often people tell me how I should feel. That I have to be hopeful, that I can’t give up, that I have to believe that I’ll recover. Watching this film reminded me that everything I have felt since having ME, every emotion and every fear has been valid.

It made me feel sad, angry and frustrated. I felt moments of grief and moments of rage. I also felt understood, and grateful. I felt like I belonged, like I was part of a community, an uprising!

Unrest: a state of dissatisfaction, disturbance, and agitation, typically involving public demonstrations or disorder

The most surprising reaction I had to the film, was that I found it strangely comforting. I had thought it would be the kind of film that I would only want to watch once, that it would be too difficult to watch it on repeat. But I have already started watching it for a second time, and I think will watch it again, and again, whenever I feel a bit lost or disconnected.

My ME is not as severe as Jen’s was (while she was making this film), but it was all so familiar. The opening scene is very effective. I found myself holding my breath as I watched Jen try, with every fibre of her being, with every ounce of strength she had left, to lift herself off the floor and into bed. I’ve never, thankfully, been that disabled by my ME, certainly not for such a prolonged period of time. I have experienced that complete lack of strength, the extreme weakness in my body, when I haven’t been able to life my head or my arms, or have lost the use of my legs. But I haven’t been as severe as Jen, in terms of, I am mainly housebound and am bedbound for at least half of the day, but Jen has been bedbound for months at a time.

When it comes to the ‘fatigue’ that people with ME experience, it’s this extreme weakness, this complete lack of strength and pure exhaustion that we’re talking about. It’s so far away from the myth that we’re ‘just tired’, I mean, it’s just nothing like being tired. It’s like referring to a hurricane as, ‘just a puddle’. It’s so insulting, not to mention factually incorrect, to conflate the two.

I’ve been thinking a lot about why we, the people with ME, have needed a film like this to come along.

It’s this idea that ME is just ‘being tired’ that drives the general perception of ME. It’s what many people think, until they get ME, or know someone who has ME. But even when you know someone with ME, you don’t really see the truth. Because when you see us, when we’re well enough for you to see us, our illness is largely invisible. You don’t see us when we’re alone at home, or in bed, so it’s easy to misunderstand, it’s easy to forget about us.

A lot of the misunderstanding is also due the damaging name, Chronic Fatigue Syndrome (CFS). If the term CFS didn’t exist, and our illness was only ever referred to as Myalgic Encephalomyelitis (ME), it would change perception immensely. The name CFS has done so much harm. It makes people think we’re just fatigued, just tired. And why would anyone spend their time campaigning for, running marathons for, signing petitions for, writing to MP’s for, raising awareness for… someone who is just tired.

The name CFS has also caused problems, in that, it’s easy to conflate the illness CFS (ME), with the symptom ‘chronic fatigue’. This confusion has had massive repercussions. So far, in the UK, the only government funded research into ME has been for psychological research. The ‘scientists’ involved believe that ME can be cured by ‘lifestyle changes’, Graded Exercise Therapy (GET), and Cognitive Behavioural Therapy (CBT). (Please read my previous post on the PACE Trial for more info.) The problem is, the participants of the trials didn’t actually have to have ME (for which the defining/cardinal symptom is Post Exertional Malaise) in order to participate, they only had to have ‘chronic fatigue’. So, the only treatments that the UK, and beyond, have to offer people with ME, are GET and CBT, ‘treatments’ which have only been trialled, not on people with ME, but people with chronic fatigue.

It is, I believe, this false notion of what ME is, that has enabled the unbelievable situation that we are in today. It has held back funding for biomedical research, it is why we have no safe or effective treatment options, no cure, no support from our medical establishments and little respect from the general public.

I can’t blame all the people for not having a thorough understanding of ME, how can any of us know everything about every illness. But, I do blame people, whether friends, family, doctors, scientists, MP’s, journalists, employers, anyone who knows someone with ME, who has a patient with ME, or a constituent with ME, who choose not to inform themselves. The people who choose apathy or blatant disbelief, despite the wealth of knowledge available online, and worse, despite what they are being told by their loved ones. These people are responsible for the decades of neglect and mistreatment that people with ME continue to face. It’s because of these people, that we have to use our precious limited energy on informing, fighting, campaigning and advocacy. These people are the reason that the film, Unrest exists. If Jen had been believed by her doctors from the beginning, she wouldn’t have had to turn her camera on herself. Her doctors only believed her, not on her word, but only once they saw visual evidence. That was the seed that planted this remarkable, and vitally important film.

This quote from the film seems particularly relevant right now…

What terrifies me is that you can disappear because someone’s telling the wrong story about you. I feel like that’s what’s happened to all of us who are living this. And I remember thinking, there’s no one coming to look for me because no one even knows that I went missing.

We need people to start listening, we need people to start telling the correct story, otherwise, nothing will change.

Sadly, a few days ago, we lost a member of the ME community. She was a wife, a mother, an active member of the ME advocacy community. I’ve shared this Ron Davis quote before, who actually features in the film, “The good news is, these patients don’t die. The bad news is, these patients don’t die.” It’s not, strictly speaking, true. Yes, it’s more common to live with ME for decades, than to die from ME, but that’s not to say ME can’t kill, it can, and it has.

I heard about her death via Jen’s Facebook page, this is what she said…

I am sad but mad as hell. When our community loses someone to this disease, my first thought is always, “someone killed you.” Because someone did. A lot of people.

Think about what Jen is saying here. Today, in 2017, we are no further forward in treating this illness than we were thirty years ago. We, the people with ME, are in the same place today that people with MS were in before the invention of the CAT scan. We have been waiting for far too long for the invention of our ‘CAT scan’ machine.

How can this be, that science is so behind when it comes to ME? It can be, because of the misconceptions that people have about ME. That’s it. It’s that simple. These falsehoods, these misconceptions have held back progress. They have fuelled the lack of investment into biomedical research. While people continue to tell the wrong story about us, while popular opinion (aided by the likes of Comedian Ricky Gervais – see trailer below) continues to believe that we are ‘just tired’, we won’t get anywhere. In order to get adequate funding for research, funding that is in line with other serious conditions, funding that will SAVE LIVES, we need people to tell the correct story. And this, is the reason I do what I do. This is why I write my blog. This is why I publicly share such personal information. This is why I approached my local paper to feature my crowdfunding campaign, not for the donations for my wheelchair, but for the opportunity to raise awareness. This is why I share every article I find about ME on Facebook and Twitter. I cannot just sit back and accept society’s neglect of us. I will continue to fight, I will continue to do everything in my power to make a difference. And after watching this film I am more fired up than ever before.

Something else that came up in the film was the loss of friends, a strange phenomenon that so often runs side by side with chronic illness. Jen said something interesting in a recent Twitter thread, it was about some of the reviews of Unrest, but it got me thinking further about the issue of fading friendships…

About half the film critics reviewing Unrest have said not it’s a “must see” but rather that it’s “a hard watch”. I’m the last person who should be speaking about the quality of my own film. But I can’t help but think what they are saying is “sick and disabled people are hard to watch”. Which is another way of saying – I’d rather look away. What I say at the end of every screening is that Unrest represents for people on this part of the spectrum, the best case scenario. And so while the world says, this is almost too heartbreaking to bear, patients say, you don’t know the half of it. It’s the height of privilege to be able to look away from pain, whoever’s pain it is. And so we are forced to package our pain, meter it, make it acceptable to others in a form that seduces or implores in just the right way. Which is the dance that EVERY oppressed group whether female, black, gay, transgender or disabled has been doing since forever. It is exhausting because there are times all I really want to do is scream.

A few of my friends have drifted out of my life since my diagnosis, and especially since I moved out of Edinburgh. Jen’s quote above made me wonder, do they, like the film critics, find me ‘too hard to watch’? I’ll never know. Because those who have removed themselves from my life have done so without a conversation, an email, a letter, an explanation. Has it been easier for them to walk away, than to face my life as it is now, to see me and my suffering? Is Jen right, is that the height of privilege, to be able to look away from other people’s pain? Have my lost friends made a conscious decision to look away? Were they so accustomed to the friendship that we used to share, that they can’t, or won’t, adapt to this new life of mine/ours? Or maybe they just don’t like me, that would be preferable actually. It’s something that I have been, and will continue to think about for some time.

What Jen said in her Twitter thread also made think about how I present myself. I use my blog to communicate, and to share. It’s my way of talking honestly about my experience of living with this illness, packaged nicely, but without rubbing it in your face. I try not to sugar coat it, but I do end up, sometimes deliberately, sometimes not, doing just that. I protect you from the most harrowing bits, I try not to come across as too negative, I word everything very carefully. Basically, I try to make my existence, my life, more acceptable to you. My blog, while it goes part of the way there, it doesn’t go into the absolute raw reality of my life, no words could, as with every other ME patient, however much I share, you don’t know the half of it.

Now, I knew I wouldn’t get through this film without crying. The first tears I shed while watching it were at this point…

It was like I had died, but was forced to watch as the world moved on. If I completely disappear and I’m in this bed and I can do nothing then it’s like I don’t even exist or that I never existed. And then what was the point of it all? Of being born in the first place? You know and honestly there are a lot of days when I just feel like I’m doing a good job by just holding it together and not killing myself. Like I’m really proud of that. And it’s not – I really don’t want to die. Like I really don’t want to die. But at a certain point it’s hard to call this living and I think the grief of all those things I might not do or see or have or…

That was Jen speaking, but it could be me, I’ve said all of these things. I’m proud of me too. I believe that anyone who can exist through this illness, with the suffering, the stigma, the disbelief, the isolation… are in possession of the most incredible inner-strength. What we live through, for years, decades, lifetimes, most (healthy) people would find unbearable for just one day. We’re positively superhuman. If I get through this alive, I’ll be so goddamn proud of myself. But if I don’t, I won’t blame myself at all. Like they say in the film, suicide is the leading cause of death in people with ME, and that isn’t shocking to me. Like Jen, I don’t want to die, but I do want to not have ME anymore. This is one of the hardest things I have faced while living with ME, the effort of staying alive. Yet, while I do my hardest every day to keep going forward, to remain hopeful, I joined Dignitas. It’s kind of funny, given its purpose, but it’s my Dignitas membership that actually helps me to keep going, knowing that I have that option, one day, if I choose, it’s like my comfort blanket.

Importantly, Unrest also has a focus on those who care for us. The people we couldn’t be without. I don’t feel I’m in a place to comment in much depth, given I’m the patient, and not the carer. But I do know how hard this life can be, the life of caring for someone with ME. And when the carer is a spouse, a sibling, or a parent, etc, it can muddy the relationship a bit. It was lovely to see, despite the odd bit of frustration, i.e. the tent scene, how much Omar values and loves Jen and their marriage. From what they showed us, they don’t seem to have lost what they had before ME joined the relationship.

I think Jen, her husband Omar, and all the film’s ME participants have been extremely brave in making this documentary. I’ve been wondering if I’ll ever be brave enough to turn the camera on myself, I can’t see it happening, but then I also never expected to blog about this stuff, or end up in my local paper.

I would also like to thank Jen, Omar, everyone involved in the making of this film. It’s already making a difference. Here in the UK we desperately need the government and the NHS to start listening. We need funding for biomedical research. We need the NHS to stop prescribing ‘lifestyle changes’ which only harm, rather than help. The biggest ever investment into biomedical research in the UK came from America, the NIH! We need our own government invest in us.

One of the wonderful things that the Unrest team were able to do was arrange a parliamentary screening of Unrest. Forty three MP’s attended. We can only hope now that these MP’s will start fighting for us. Labour MP Mark Tami has already said…

This sort of stigma around ME is exactly the sort of thing we need to eradicate. Little is known about the illness and there is no known cure for it, which is probably why society appears to be so ignorant towards it.

ME is clearly a very complex condition but as a country we are not doing enough for patients who are suffering from it. This essentially boils down to funding, I therefore intend to push the Government to provide sufficient funding, and ensure this funding is adequately spent in the right areas.

This is exactly the kind of response we need from this film. I want people (the ones who don’t have ME) to have their eyes opened by the brutality/reality of what they’re watching. I want them to be amazed at the resilience of the ME patients featured in the film, against all the odds these people keep smiling and keep hoping. I want this film to educate people. I want it to highlight the dire need for treatment and a cure. I want the people who have previously dismissed ME to admit they’ve been wrong, to put that aside and to keep educating themselves and others. I want our governments and our medical establishments to stop ignoring us. I want this film to push people into action, and if it doesn’t, I don’t know what will.

 

Unrest Official Trailer

 

Jennifer Brea’s TED Talk

 

WATCH UNREST

On the big screen (in Scotland)…

Vue GLASGOW Fort, Monday 27th November, 7pm. Buy tickets here… https://www.ourscreen.com/film/Unrest

Odeon EDINBURGH Lothian Road, Wednesday 29th November, 6pm. Buy tickets here… https://www.ourscreen.com/film/Unrest

Eastgate Theatre and Arts Centre PEEBLES, Thursday 18th January, 7.30pm. Buy tickets here… https://eastgatearts.com/events/unrest/. (Particularly pleased about this screening in my own town, in the theatre I used to work in! Arranged by myself, my mum and a good friend.)

For other screenings, search here… http://see.unrest.film/showtimes/

Online…

On iTunes… https://itunes.apple.com/gb/movie/unrest/id1265409535?mt=6&ign-mpt=uo%3D4

On Vimeo… https://vimeo.com/ondemand/unrest

On Google Play… https://play.google.com/store/movies/details/Unrest?id=iTC0y4l1Jgc

On Amazon Video… https://www.amazon.co.uk/Unrest-Jennifer-Brea/dp/B075LS6ZTZ?tag=geo01-21

On VUDU… https://www.vudu.com/movies/#!overview/894864/Unrest

On DVD…

Unrest is coming to DVD in December. Follow this link and fill out the form to receive a notification when DVDs are on sale… https://www.unrest.film/watch/#DVD

 

UNREST REVIEWS / UNREST IN THE NEWS

ITV News: https://www.youtube.com/watch?v=7UVmIc6FKnE

BBC Breakfast: https://www.youtube.com/watch?v=ZRAM7Q2nx10

The Daily Telegraph: http://www.telegraph.co.uk/health-fitness/body/could-documentary-change-way-perceive-chronic-fatigue-syndrome/

BBC / Mark Kermode: https://www.youtube.com/watch?v=NGoK56TdNQY&t=2s

The Times: https://www.thetimes.co.uk/article/our-lives-were-frozen-by-chronic-fatigue-syndrome-rdftnm75p

The Pool: https://www.the-pool.com/health/health/2017/43/the-pool-talks-to-jennifer-brea-about-unrest-documentary

Huffington Posthttp://www.huffingtonpost.co.uk/dr-simon-duffy/uk-establishment-me_b_18375968.html

BBC News / Stories http://www.bbc.co.uk/news/stories-41888146

The Daily Express http://www.express.co.uk/life-style/health/870117/what-is-chronic-fatigue-syndrome-symptoms-treatment-me-unrest

The Salt Lake City Tribune http://archive.sltrib.com/article.php?id=4867522&itype=CMSID

The New York Times https://www.nytimes.com/2017/09/21/movies/unrest-review.html?mcubz=0

San Francisco Chronicle http://www.sfchronicle.com/movies/amp/Documenting-a-disease-from-the-inside-12217878.php

Megyn Kelly TODAY https://www.today.com/video/filmmaker-opens-up-about-illness-that-doctors-told-her-was-all-in-her-head-1056956483601

Cosmopolitan http://www.cosmopolitan.com/lifestyle/a12779054/what-is-chronic-fatigue-syndrome/

Chicago Reader https://www.chicagoreader.com/chicago/unrest/Film?oid=31012439

San Francisco Weekly http://www.sfweekly.com/film/film-film/unrest/

Los Angeles Times http://www.latimes.com/entertainment/movies/la-et-mn-capsule-unrest-review-20170928-story.html

The Hollywood Reporter http://www.hollywoodreporter.com/review/unrest-review-967867

Film Inquiry https://www.filminquiry.com/unrest-2017-review/

The Washington Post https://www.washingtonpost.com/national/health-science/a-film-directed-from-bed-tells-the-story-of-woman-with-chronic-fatigue-syndrome/2017/11/24/05a42594-cec1-11e7-81bc-c55a220c8cbe_story.html?utm_term=.bae816e6532c

Rotten Tomatoes https://www.rottentomatoes.com/m/unrest_2017

Post Eighteen. Crowdfunding My Wheelchair.

You may have read my previous posts about my indecision regarding buying a wheelchair…

Post Sixteen. Wheelchair Or Not?

Post Sixteen Continued… Wheelchair Or Not. An Afterword.

Well, I have decided to go for it and have given myself 30 days to raise the £2795 I need via JustGiving Crowdfunding.

This a huge, emotional and scary leap for me. But one of the things that helped me come to this decision, were the many kind and supportive comments and messages that I received in response to the above posts, it was really very encouraging and I thank you all very much for taking the time and energy to contact me. I still feel nervous about this, in fact I’m downright terrified. But I’m also a little bit excited, I very much hope that this decision will lead to a better quality of life.

If you would like to contribute to my wheelchair please follow the link to my crowdfunding page below. All contributions will be very much appreciated. And please feel free to share my crowdfunding page, if you wish to. Thank you so much, Phoebe.

www.justgiving.com/crowdfunding/phoebeselectricwheelchair

 

 

 

 

 

 

 

Post Seventeen. The PACE Trial Scandal.

I have been wanting to write about The PACE Trial for some time, about the background, the controversy and where we are at today. I have tried, but unlike my usual posts it is very technical, involves a lot of research and there’s a lot to cover. I just don’t have it in me, with my brain fog and inability to really concentrate, it’s just too much. Luckily, this morning, a UK newspaper published a really informative and accurate article on the very subject, basically, the journalist in question, Jerome Burne, has done my job for me.

This article was in the most surprising place, The Daily Mail Online. Not only did The Daily Mail publish a good article about ME, but they referred to the illness as Myalgic Encephalomyelitis (ME), this is actually quite ground breaking stuff. Most mainstream articles refer to it as Chronic Fatigue Syndrome (CFS), which isn’t officially inaccurate per se, but CFS is, on the whole, very misleading. For the uninformed, it implies that this illness is simply ‘fatigue’, it perpetuates the myth that we are ‘just tired’. I can’t think of any other major illnesses that are named after only one of their symptoms. A symptom of Multiple Sclerosis is fatigue, but it isn’t called Chronic Fatigue Syndrome. A symptom of Lung Cancer is coughing, but it isn’t called Chronic Coughing Syndrome. A symptom of Alzheimer’s Disease is memory loss, but it isn’t called Chronic Forgetfulness Syndrome. I think you get my point.

What’s worse than CFS, is when it is referred to as ‘Yuppie Flu’. This stems from a ME outbreak in the 1980’s, when it was seemingly mainly young professionals who became unwell with ME, and the term ‘Yuppie Flu’ was born. It is derisive, outdated and offensive, yet it is still frequently used in the reporting of ME. A recent article in The Telegraph actually used ‘Yuppie Flu’ in their headline. Thankfully they changed it shortly after publication, realising how offensive it was (after a lot of complaints from the ME community). You might think that these things shouldn’t be that important, that we are using our limited energy on the wrong battles. That we (people with ME) should be grateful for any scrap of exposure thrown our way. No. These things matter. Language matters. The words we speak have meaning, and impact. When reporting, in the science section of a national newspaper, on a serious health matter, the language used should not reduce the health matter in question to a joke.

The PACE Trial (short for “Pacing, graded Activity, and Cognitive behaviour therapy; a randomised Evaluation) is, essentially, a medical scandal, not dissimilar to the Andrew Wakefield MMR vaccine controversy. The PACE Trial has impacted on every single person with ME in the UK, and beyond. It is the basis on which the NHS ‘treat’ ME, and due to the influence of the trial’s authors, it impacts heavily on the funding of ME research, which in the UK, is poured into psychiatry, rather than much needed biomedical research. Misconceptions were already there, but The PACE Trial, and the psychiatrists connected to it have actively encouraged the media, the government, medical professionals and the general public to believe that ME is a psychological illness. That it is ‘all in our heads’, that we don’t have an intolerance to exertion but ‘false illness beliefs’, that we have somehow, collectively, all 17 million of us, falsely convinced ourselves that exertion is harmful. In fact anyone with ME could tell you exactly how exertion, both mental, emotional and physical impacts on our bodies. I really don’t understand how it could be ‘false illness beliefs’ that cause my shoulder joints and muscles in my arms to hurt, to the point of tears, after a twenty minute (hands free) phone call. The damage that The PACE Trial has done/is doing to us is immeasurable. The trial has been widely debunked, but until it is officially retracted, the damage will be ongoing, in actual fact, the damage will probably live even after it is retracted.

Anyway, back to the article by Jerome Burne. He did such a good job, and I’m incredibly grateful to him. It’s one of the best articles on this subject that I have read. I have copied the article below, with a link to the original article (just click on the headline to take you to The Daily Mail website). Throughout the article I have added some additional information, and some of my own thoughts, you’ll find these in brackets in blue text.

Why are doctors and patients still at war over M.E.? How the best treatment for the debilitating condition is one of the most bitterly contested areas in medicine

By Jerome Burne for The Daily Mail. 15 August 2017.

Myalgic encephalomyelitis (ME) is a debilitating condition that can leave those affected bedridden for years. It’s linked with as many as 60 symptoms, the most common being a feeling of constant exhaustion — ‘like a dead battery’. (Yes this is a common symptom, but not the defining symptom. The defining symptom is post exertional malaise, an intolerance to exertion, which causes symptoms to flare after the activity. ‘Dead battery’ however is a good description of the exhaustion. The exhaustion is less ‘feeling tired’, but more a severe lack of energy, or severe weakness. I have experienced tiredness previous to having ME, I’ve had insomnia and sleepless nights for years. But it never caused me to be unable to lift my phone, my head, my toothbrush…)

The condition first reached mainstream consciousness in the Eighties following outbreaks in New York and Nevada. By then it was officially known as chronic fatigue syndrome (CFS).

For a time, it seemed everyone knew someone who was affected by it, and it was derisively dubbed ‘yuppie flu’ because it seemed typically to affect young professionals.

For years there’s been a long-running and bitter debate between doctors and patients about its cause and how to treat it.

The lack of a clear physical cause meant many doctors dismissed it as all in the mind. This infuriated patient groups who insisted it was all too real and the result of an infection or immune system failure.

Even now, when it is generally accepted that ME/CFS is a genuine condition, it remains one of the most angrily contested areas of medicine. But the battle lines are no longer drawn just between patients and doctors: the medical community itself is at loggerheads.

The issue: the best way to treat ME. This has huge significance for the estimated 500,000 people in Britain affected by it. The official NHS treatment for their condition is delivered by psychologists and involves a combination of cognitive behavioural therapy (CBT) and graded exercise therapy (GET) which involves doing a little more each day. (Interesting to see the estimated figure as 500,000 rather than the usual 250,000. I learned recently that the ‘250,000’ figure was actually estimated around 30yrs ago, so of course this number has grown.) (As well as providing little benefit, GET is actually harmful and dangerous. This ‘treatment’ has caused many people with ME to experience a severe and often permanent worsening of their symptoms, and has, in some cases, lead to death.)

The idea is that doing regular aerobic exercise would help patients a lot, but that they are held back by ‘fear’ of activity: the CBT is meant to overcome this. (Using CBT to alleviate our alleged ‘fear’ of activity is of course nonsense. I did however find CBT useful in terms of helping me to cope with this huge life-altering diagnosis.)

Many patients and doctors claimed this combination provided little if any benefit.
This dispute has now broken out into the public arena in an extraordinary fashion. Two weeks ago the Journal of Health Psychology published what was effectively an attack on the official NHS treatment. (You can find the journal online here ‘Journal of Health Psychology, Volume 22, Issue 9, August 2017. Special Issue: The PACE Trial‘)

Three editors resigned from the journal in protest at this stance. In a leaked email, one of the resigners was described as a ‘disgusting old fat neo-liberal hypocrite’ and an ‘ol’ sleazebag’ by an editor who supported the journal’s approach.

But the insults swing the other way, too — recently, a scientist described patients critical of the CBT approach as ‘borderline psychopaths’ and likened them to animal rights activists. (Remember, these are professional scientists who are referring to the very people they claim to be ‘working for’ as ‘borderline psychopaths’, simply for questioning their claims.)

The row is about a trial published in The Lancet in 2011 that helped form the official guidelines on treating the condition. This was a large trial, called PACE, involving 641 patients, costing £5 million. It was paid for by the Government and carried out by psychologists at Queen Mary University in London. (Interestingly the trial was also part funded by the The Department for Work and Pensions (DWP), the only clinical trial they have ever funded, I believe. Could it be that The PACE Trial was less ‘science’ but more a cost cutting exercise for the government? With the aim of reducing benefit and insurance claims? It is in fact not at all uncommon for the DWP to turn down disability benefit applications from people with ME who refuse CBT and GET…)

PACE found that patients being treated with the combination treatment — 14 sessions with a therapist over a six-month period — improved by 60 per cent, while the ‘recovery rate’ (which implied a ‘cure’) was 20 per cent. (It is worth noting here that the researchers changed, throughout the trial, what constituted as ‘improved’ and ‘recovered’, because they weren’t getting the results they wanted. Participants could end the trial being more unwell than when they started, yet they were still categorised as ‘recovered’. Also, they used the Oxford Criteria for diagnosis of the participants, as opposed to the Canadian Consensus Criteria. The Oxford Criteria is widely considered to be overly broad. It does not include the defining symptom of ME, post exertional malaise, rather, it lists ‘fatigue’ as the main symptom. So, did the participants actually have ME to begin with?)

“For every 15 patients selected under Oxford criteria, 14 will be false positives when compared to Canadian Consensus Criteria” me-pedia.org

(There is now an even more up to date clinical criteria for ME. The ME International Consensus Criteria, published in the Journal of Internal Medicine in 2011. This is an update of the Canadian Consensus Criteria, which was published in 2003. You can read more about The ME International Consensus Criteria in my blog post, Post Seven. Symptoms)

But a new analysis of the data has suggested that patients experience just a 20 per cent improvement, and only 5 per cent are classed as recovered. (Would a pharmaceutical drug with such low odds for improvement or recovery be approved as an NHS treatment?)

‘This has cast serious doubts on the recovery rates being claimed,’ adds Dr Charles Shepherd, honorary medical adviser to the charity the ME Association (Dr Shepherd was also a member of the Chief Medical Officer’s Working Group on ME/CFS and the Medical Research Council’s Expert Group on ME/CFS research).

‘The trust of patients has been lost. PACE needs to be withdrawn.’

In fact, patient campaigners have been claiming for years that the psychological approach is profoundly wrong because it implies the problem is the way the patient thinks about it. They consider that they’re suffering from a physical disorder.

The re-analysis of the PACE data has set the cat among the pigeons. A challenge to evidence supporting a NICE-approved treatment is unusual, not least because the data was only made available after a protracted battle by patients.

Ever since its publication in The Lancet, the PACE trial had been questioned by patient groups. They wanted to see all the data the trial had gathered to check the statistics.

For five years patient advocates and some doctors sent letters and Freedom of Information requests to the researchers — Professor Peter White (of Queen Mary University of London), Professor Michael Sharpe (Oxford University) and Professor Trudie Chalder (King’s College London) — without success.

Grounds for refusal included risk of revealing patient identities and claiming the demands to hand over the data were vexatious or a form of harassment.

Indeed, one expert witness for the researchers drew parallels between these ME/CFS ‘activists’ and animal rights groups, suggesting there was a serious risk of violence to researchers if the data was released. But then the Information Commissioner’s Office became involved and the university was ordered to cough up the data. It refused and then spent more than £200,000 to have the order dismissed.

This was rejected by a tribunal (as for the claim of threats being made, under cross-questioning the expert witness admitted there hadn’t been any). (The witness lied about the ME community threatening them. There have been no threats.)

When the trial data was finally re-analysed and checked by two independent academics, Philip Stark, a professor of statistics at the University of California, Berkeley and Professor Bruce Levine from the Department of Biostatistics at Columbia University, it ‘revealed that the study contained little evidence that CBT and graded exercise add anything to standard medical care in terms of patient recovery’, according to Professor Levin.

This was backed by Jonathan Edwards, an emeritus professor of connective tissue medicine at University College London.

‘The results of the re-analysis shows that the call for access to the PACE data for independent analysis was justified,’ he said. ‘It confirms that this study failed to provide reliable evidence for useful, sustained benefit from either CBT or graded exercise therapy.’

Sir Simon Wessely, Regius professor of psychiatry at King’s College London, has long been identified with the psychological approach. When he was asked about the data re-analysis last year, he was quoted as saying: ‘OK folks, nothing to see here, move along please.’ (He is unable, or unwilling, to back up his data, or to provide any evidence.)

He added that patients did improve and that the treatments were moderately effective. (Again, he has nothing to back up his claims.)

ARTHRITIS DRUGS MIGHT HELP

The Journal of Health Psychology gave the original researchers the right to respond to the criticisms — they said they stood firmly by their findings, and that ‘the PACE trial… along with other studies provide patients, healthcare professionals and commissioners with the best evidence that both CBT and GET are safe and effective treatments’.

But what about the ‘biological’ theories of ME/CFS and the new research published recently suggesting a link with raised levels of molecules linked to inflammation?
Commenting, Dr Alan Carson, reader in neuropsychiatry at the University of Edinburgh, said what wasn’t clear is whether a higher level of these molecules ‘necessarily make you feel worse’.

He added: ‘It’s highly unlikely it will lead to a blood test any time soon.’

Yet Professor Edwards, who has described the PACE trial as ‘poorly designed, poorly executed and inappropriately interpreted’ believes that studies are needed.

‘Here in the UK we’ve spent far too much on the psychological aspect,’ he says.

‘Understanding the biology is what’s going to lead to an effective treatment.’

Professor Edwards, a rheumatologist, has previously found that patients with ME/CFS as well as rheumatoid arthritis reported great improvement when they were treated with the powerful anti-inflammatory drugs used for their arthritis. A trial of this is now under way. (This drug is called Rituximab. It is used to treat some autoimmune diseases and some types of cancer)

Meanwhile, PACE continues to have support among psychiatrists and psychologists. It seems unlikely that it will be withdrawn, and so the struggle between the doctors and patients continues.

UPDATE: COULD IT BE CAUSED BY INFLAMMATION?

At the heart of the issue is what causes ME. Patient activists and some doctors consider it a physical disorder.

This ‘biological’ theory appeared to be reinforced by recent research from Stanford University in the U.S. that identified a new set of ‘messenger’ molecules in the blood that are part of the immune system and behave differently in ME/CFS patients. (You can read about it here ‘Researchers identify biomarkers associated with chronic fatigue syndrome severity, Stanford Medicine News Center‘)

New, sophisticated equipment allowed a team to run a very detailed analysis of the blood of 192 patients, comparing it with nearly 400 healthy people. They found that immune system messenger molecules (cytokines) that trigger inflammation and produce flu-like symptoms were higher in patients with the most severe symptoms.

An independent expert, Gordon Broderick, a systems biologist at Rochester General Hospital in New York, commented that it was a ‘tremendous step forward’.

~~~

Again, I’d like to thank Jerome Burne for writing this article. It means a great deal, and it brings me hope when ME is reported in the mainstream media in such a fair, balanced, accurate, informative and sympathetic manner. More articles like this will help to change the general perception of ME and hopefully result in this debilitating illness to be taken more seriously.

 

Further Reading:

PACE Trial, MEpedia

The Making of the PACE Scandal, Centre For Welfare Reform

The PACE Trial: The Making of a Medical Scandal, The ME Association

‘No confidence’: Charities reject NICE ‘no update’ proposal for ME/CFS guideline, VADA Magazine

Getting It Wrong On Chronic Fatigue Syndrome, The New York Times

Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back, STAT News

How a study about Chronic Fatigue Syndrome was doctored, adding to pain and stigma, The Conversation

James Coyne “lays waste” to PACE trial in Edinburgh, Phoenix Rising

 

 

 

 

Post Sixteen Continued… Wheelchair Or Not. An Afterword.

After my last post I realised something, albeit with the help from my counsellor. It’s not what other people might think about me as an occasional wheelchair user that is holding me back, it’s what I think of myself.

This life was not meant to happen to me. I’m meant to be living in my beautiful flat in Leith, Edinburgh, with views of Edinburgh Castle to one side and Fife to the other. I’m meant to be working, advancing my career at Cyrenians, or maybe I would have moved on to another charity. I was meant to go to Antarctica. The wildest and most unlikely of dreams I ever had came true, I worked hard and I made it come true. I was chosen, trusted and selected as one of the four staff to work and live at Port Lockroy, the ‘Penguin Post Office’, for four months. My main role was going to be within the shop, I was going to be responsible for the finances, inventories and stock management. I would also be assisting with running the Post Office, non-merchandise stock control and liaison with the cruise ships. After I’d returned from Antarctica I was planning on, at some point, a short-term move to Reykjavik in Iceland, I was going to enrol in the University’s summer language course, (try to) learn Icelandic and then maybe stay longer, or not (that would be dependant on the successful, or not, learning of the Icelandic language). I’m meant to be travelling and exploring the world. I was not meant to get ill, lose everything I had worked for, move back to my hometown, be reliant on benefits and get a wheelchair. This is never how I imagined my life would turn out. I’m ashamed that I think this, but I already view myself as having failed. Failed at what? I don’t know, life I guess. Becoming a wheelchair user is just one more step in the ‘wrong’ direction. In reality, I know it will be good for me. But in my head, it’s not right.

The funny thing is, I would never think this about anyone else. Having a chronic illness and/or a disability does not equal ‘weak’, I would never suggest that anyone else who uses a wheelchair, or any other mobility aid is a failure, never. I would be appalled if I heard anyone else say such things about another person. So why am I so harsh on myself? I often say that I worry that other people feel this way about me. But the truth is, this has never come from anyone else, it’s all me. It’s how I view myself. A big part of me hates the invisibility of my illness. I know it comes from a kind place, but it’s upsetting when people tell me ‘I look well’, when they know I’m not. But for the people who don’t know me, the many strangers, when they see me walking in town, I could be a successful person for all they know, with a career, a social life and a body that works. As soon as they see me in a wheelchair, well then they’ll see me for what I really am, and that is not someone who is living their best life. Maybe I like the invisibility of my illness more than I admit to.

Saying this, I’m actually not so conceited that I think anyone pays any attention to me at all, wheelchair or not, chronic illness or not. I’m projecting what I think about myself onto others, because it’s easier to deal with what other people, strangers, ‘may’ think of me, rather than what I think of myself. That, is what I need to deal with. I need to somehow get out of my head and come to terms with the life I have, and be happy with, or at the very least, accept the life that I have.

 

 

Post Sixteen. Wheelchair Or Not?

I’m currently trying to decide whether or not to buy an electric wheelchair. It is however, an expensive purchase, in the thousands, so if I do, I have to be sure. The problem is, I’m not sure.

If I go for it I will first have to get over some significant emotional barriers about what this means for me. Does it mean I am ‘giving in’ to my illness? If it does, is that bad? There’s little point in pretending that I don’t have ME, that I’m not severely incapacitated by it. Will I become too dependant on it and risk deconditioning? I don’t think so. I can walk short distances and I don’t plan on using the wheelchair to get somewhere I can manage by foot, I like to use my legs when I can. So I’ll still be walking the same short, and infrequent distances as I currently do, and I had it confirmed at a recent hospital appointment that my muscles have not (yet anyway) deconditioned. Will I feel self-conscious and embarrassed to use it in public? Probably. I already feel self-conscious and embarrassed to use my walking stick. Will people treat me differently when they see me as a wheelchair user? Possibly. This article in The Pool suggests that 25 per cent of Brits find it “uncomfortable” talking to disabled people. Apparently some people feel they have nothing in common with disabled people. Will the people who once felt they had things in common with me no longer feel that way? Has my personality now reduced down to nothing but ‘chronically ill person’? To be honest I think some people already do feel that. They can’t see that despite this life-changing illness I am still the same person, with the same interests, the same morals, the same passions, the same dreams and the same goals, it’s just that my body no longer works as well as it used to. Something I struggle with is that my illness is ‘invisible’. Generally speaking I look ‘well’. There’s no way that someone who didn’t already know could look at me and know that I have a severe debilitating chronic illness/disability. So a wheelchair would solve that problem, wouldn’t it?

There are many situations that I currently avoid. On a better day I can manage the walk to the post office and back, although not without PEM (post exertional malaise). But this is based on not having to stand in a queue, and I can’t possibly know ahead of time if there is a queue or not, so I don’t risk it. A wheelchair would change this. There are also many activities that I simply cannot do, that are far too much for me, that I don’t have the energy for and that my legs wouldn’t manage. Like walking to my mum’s house, or having a wander along the High Street to visit my favourite coffee shop that is just that bit too far for me to walk (I’m talking about you Coltman’s). When I go out I might be able to stay out for longer while maintaining my energy levels. On better days I could do these things with a wheelchair. Note that this would still have be on a better day, I might have wheels but I’d still have ME, I’d still have daily widespread pain, debilitating exhaustion, dizziness, brain fog and sensory overload. Having an electric wheelchair won’t undo any of my symptoms, it will simply give me access to a higher level of mobility than I currently have. So far, I’ve begrudgingly accepted my current limitations, the fact that I’m mainly housebound, that many activities that used to be so everyday and normal for me are now off limits, I don’t like it, but it is what it is. But maybe it doesn’t have to be? With a wheelchair maybe I could regain some of my lost independence and freedom, maybe it would open my world up. If I can get past my fears and insecurities it could be wonderfully empowering.

I do however have concerns, some rational, and some possibly less so. I’m concerned about how much I will use it, will it be worth it? Like I said, the arrival of a wheelchair is not going to suddenly improve my health enough that I can start going out every day, or even every other day. What if I only get use out of it a couple of times a month, is that enough to justify the cost? I also have to think about the overall use of my already limited energy. If having a wheelchair will allow me to go out more frequently, will I actually end up using more energy on these outings, energy that I wouldn’t have used otherwise? Should I accept and stick to my limitations, remain mainly hosuebound in the hope that only prolonged rest and limited activity will allow me to recover? Maybe. But this existence has already damaged my mental health, so what will a few more years, decades, or a lifetime of this do to me?

One of my main concerns is based around the fact that I can walk short distances. I worry about what people may think, or say, when they see me get up from my wheelchair and walk. There’s a horrible meme that I’ve seen on Facebook a few times, (which unfortunately means that I have friends who have ‘liked’ or shared this meme). It’s a photo of a woman standing from her wheelchair to reach a high shelf in a supermarket. The caption reads “There’s been a miracle in the booze aisle!”, or something along those lines. It’s cruel, it’s ableist, and not in the least bit funny. I don’t want to become a meme. Some people seem to think that wheelchairs are only for those who cannot walk, at all, ever. I read The Mighty, an excellent website full of personal accounts written by people all over the world living with various illnesses and disabilities. I’d recommend it for anyone, it has aided my understanding of the vast world of illness and disability immeasurably, and couldn’t we all use a good dose of increased empathy. I come across a new post pretty much every day about people judging disabled people. Either they don’t look ‘disabled enough’ to use that parking space, despite having a Blue Badge (or the equivalent in their country), or they look ‘adequately disabled’ in their wheelchair, but then they rise from their wheelchair and their spectators think ‘my god it’s a miracle’, or more frequently, they think the person in the wheelchair is a fraud. This kind of thinking is common, far too common, I read these stories frequently. Many people judge and make assumptions, they lack the ability to consider any set of circumstance other than their own, they view disability in black and white, rather than the many shades of grey that make up the world of disability and chronic illness. I don’t want to be the person being judged for getting out of my wheelchair when I can, need or want to, and I don’t want to be the butt of anyone’s jokes, especially not when I’m already going to be feeling all sorts of self-conscious and vulnerable sitting in my wheelchair.

Of course, when I’m able to temporarily push my fears aside, when I’m thinking rationally, or when I think about how I would advise someone else, it’s a different picture altogether. I view a wheelchair like a pair of glasses. People who don’t have perfect sight wear glasses, or contacts, to aid their vision, and some people use wheelchairs to aid their mobility. It’s an aid, something to help and enhance a person’s quality of life. No one judges me for aiding my vision by wearing glasses when I use the computer or read, so maybe no one will judge me for aiding my mobility by using a wheelchair, and those who do view me differently, well, do I want them in my life? And I know I shouldn’t care what strangers think, but I do, sadly. When I’m able to think positively about this new world of mobility, I already know where I’ll go first. My favourite walk, in the valley behind my mum’s house, it’s so peaceful, the town is completely out of sight, and maybe this sounds cheesy, but it’s where I feel closest to my dad, we walked here together so many times. The wheelchair I have my eye on won’t manage the whole walk, I’d need an all-terrain, four wheel drive monster of a wheelchair to walk the full thing, but just a glimpse of the valley would be enough for me. The thought of being able to go out and not worry about how long my legs will hold me up, or whether my lightheadedness or dizziness will overwhelm me, well that thought brings me nothing but joy.

The wheelchair I’ve been eyeing up is lightweight and foldable, and of course it’s electric. I don’t have the strength in my arms to self-propel, I mean, I couldn’t even squeeze the juice out of a lemon the other day. And I don’t want to be reliant on someone pushing me, that defeats the purpose entirely. The reason I have to be absolutely certain about this is the cost, it’s incredibly expensive, around the £2,500 mark, possibly more depending on what accessories I buy, like a second battery etc. Before you ask, no, an electric wheelchair, for me, is not available on the NHS. If I want it, I have to buy it. There is however another option. Crowdfunding. It is not uncommon at all, actually it’s incredibly common, for people to crowdfund their electric wheelchair. I don’t know how I feel about this, actually I do, I feel really uncomfortable about this. I know it’s not exactly the same as a person asking for sponsorship to fund their amazing holiday to Peru so they can hike The Inca Trail to Machu Picchu, under the guise of ‘charity’, but the idea of it makes me squirm all the same. So I ask you, how would you, my friends, family and readers feel about me crowdfunding my electric wheelchair? Would it be really cheeky and/or presumptuous of me?

There’s another option, I could reapply for PIP (Personal Independence Payment), a benefit that helps with the extra costs of a long-term health condition or disability, it’s the one that is gradually replacing DLA (Disability Living Allowance). I did apply for this a couple of years ago, I attended the horrendous face-to-face assessment, the assessor lied in his report (for example, he claimed that I made my own way to the assessment centre, even though my mum drove me, which he knew, he gave her a form to claim back her petrol expenses) and the DWP turned me down. Despite the fact that more than half of PIP decisions are changed after mandatory reconsideration or an appeal to a tribunal, I didn’t fight it, I simply didn’t have the energy. I also felt that I could manage without PIP, I had my ESA (Employment Support Allowance) and the rental income from my flat (minus the letting agency fee, mortgage, insurance etc), so I wasn’t feeling hugely driven to challenge the result. Something really annoying though, I really could use a Blue Badge, which means when I go to the GP, or to the hospital, or anywhere that has designated disabled parking, my mum could park there. But, in the region in which I live (Scottish Borders), I can’t apply for a Blue Badge without first receiving PIP. So, to get a Blue Badge, I would need to reapply for a benefit that I don’t really need, then apply for the Blue Badge. It’s ridiculous. But actually, the more I think about it, I could use PIP. It would take time to save up, but it could pay for my wheelchair, it could pay for the expensive experimental treatments that I currently cannot afford, acupuncture for my chronic migraines, for example. It could pay for my counselling (currently paid for by a kind benefactor), it could pay for my supplements and my private prescription for Low Dose Naltrexone. The more I think about it, my illness/disability does incur many costs, having ME is expensive, and that is exactly what PIP is for. But do I have it in me to go through the traumatic (no exaggeration) application process again? I don’t know. My mental health is fragile, and the DWP are certainly capable of pushing me over the edge.

One of my biggest bugbears in life is unsolicited advice, people advising me when I haven’t asked for advice. But I am now asking for advice, your advice is very much solicited. What should I do? What would you do? Should I feel self-conscious? I know you’ll say I shouldn’t, I guess what I really mean is, can you understand why I will feel self-conscious? Can you empathise with me? Have you ever had judgemental thoughts about someone who can walk short distances using a wheelchair? Did you laugh at that internet meme? Do you think it means I’m giving in to my illness? Do you think it will hinder my recovery? How should I pay for it? Can I crowdfund this without people thinking “cheeky cow, pay for your own mobility aids!”? Should I put myself through the harrowing process of applying for PIP which will undoubtedly end up at a tribunal (most do)? Or, could it be one of the best possible things I could do for myself? I just don’t know. I really don’t.

Update: The day after I published this I had a moment of clarity regarding the fears that are holding me back. You can read about this here… Post Sixteen Continued… Wheelchair Or Not. An Afterword.