Hello and welcome to February’s newsletter. Hope you have had the best month possible.
Nominations for Merryn’s Smile Day 2023 are now open. You can nominate a Severe or Very Severe ME sufferer for a special Smile by completing our nomination form.
Merryn’s Smile Day is an annual event when we send Smiles to those affected by Severe and Very Severe ME in Merryn’s memory on her Birthday, 13th May.
Merryn Crofts sadly passed away from Severe ME in 2017 just days after her 21st birthday. I was lucky enough to be her friend and thanks to her family’s blessing Merryn’s Smile Day was created in 2019 to celebrate her birthday.
Smile For ME want to remember Merryn by sending a Smile in her name to those suffering with Severe and Very Severe ME. Merryn loved sending little gifts and also loved it when happy post arrived for her so we are glad to be able to do this in her memory.
To read more about Merryn and Merryn’s Smile Day click here.
12 Smiles were sent to both ME sufferers and carers of all ages this month. All chosen and personalised to fit each person’s likes and interests. Some of the items sent this month included a colouring book, pens, bake shop clay modeling kit, decopatch craft set, murder mystery case files game, video games poster, computer coding book, nature postcard set, puzzle, candle, make up brushes, beard oil, bath bombs, face masks, hair accessories, Playstation gift voucher, and chocolates.
Share a story
This month’s share a story is by Dave. He lays his story out from ‘How it all began’, ‘The diagnosis’, ‘Prior experience with ME’ and ‘Plenty of time to reflect’ as he feels there is something important in sharing stories. Thank you Dave for sharing your story.
Despite living with ME for coming up to 6 years, it’s still a difficult thing to write about. Your first instinct is that you’re just telling other people with ME what they already know. Our stories are often similar, we’ve been through the same, or similar things. But, at the same time, I feel like there’s something important in sharing our stories, even if they are similar. It’s knowing that we have that shared experience; that we’ve been through similar things and can relate or empathise.
Any chronic illness can make you feel utterly alone, especially once your friendships and relationships break down. None more so than ME. I know that’s how I felt when I first slipped from mild to moderate. I started to feel more and more separated from my friends, family and my wife in particular. I felt the need for a community, support, reassurance and I couldn’t find that amongst non-disabled/non-chronically ill people. As somebody who was still relatively new to all of this even a few years ago the importance of reading stories of those that have been doing it longer than you, who have experience to share and advice to offer can’t be understated. So I opted to just lay my story out as it is, without any flourishes. Maybe it’ll strike a chord with somebody down the line, in the same way many stories of people with ME did for me.
Being diagnosed with ME is much like any other long-term, chronic illness: you assume there are treatments, that it’s well understood and that it’ll become less of a mystery to you as time goes on. But whether you’d been familiar with ME or not, you quickly find out that there are no recognised treatments (pacing doesn’t count), it is very poorly understood and, if anything, it becomes more of a mystery to you as time goes on and new symptoms develop.
How it all began
Unlike many I was aware of ME prior to becoming ill with it myself. I was in a relationship for over a decade with somebody who had mild ME and fibromyalgia. She still managed to function about 95% of the time. But on those occasions where symptoms flared up she’d be out of actions for days, weeks or sometimes months at a time. And, as a woman with this chronic illnesses, the go-to response whenever she sought help was ‘lose weight’ or ‘change your lifestyle’. I admit that, at the time, I didn’t really understand it. But I tried to and I did my best to support her wherever I could. I formerly worked in clinical research for the NHS and I first became ill in July 2018. It’s a sad fact but I still have the text I sent to my manager at work to let her know I would be off for a day or two with a virus. I knew it was a respiratory virus because I stupidly continued the training I was doing for a 5k & found it so much harder. Nothing heavy, barely 15 minutes a night a few times a week. But my breathing was noticeably worse. I was struggling after a few minutes and getting tingling in my hands and feet if I pushed too hard. As you do, I assumed it would pass once the virus had left my system. Not surprisingly. It didn’t.
Six weeks later and my breathing had continued to worsen. I was now finding myself tired and fatigued, as well as suffering with muscle weakness/pain, along with periods where my brain felt ‘fuzzy’. Having previously been diagnosed with atrial fibrillation at 34, I initially assumed it was somehow heart-related. So I went back to my GP who, lo and behold, pulled out the ‘it’s just anxiety’ card without even bothering to send me for the most basic of bloods. The afib diagnosis had come about after I’d ended up in A&E on two separate occasions (because he’d ignored the warning signs there too) so after little luck finding a new GP I had to pay for one.
Luckily I was still working at that point, I had a good job and it seemed the fastest route to answers. Initially it went well. I found a competent, interested and receptive GP at a private practice in the city centre and he was very enthused to have something more complex to investigate. But after a dozen blood tests, a scan or two, trials of thyroxine, testosterone injections, B12 shots & a few others things besides, the experimentations came to an end. I wasn’t rich, I’d started borrowing money & I could tell that my new GP was getting a bit frustrated with me for not getting better. I started to feel like it was my fault. So I opted for a few months off work instead and to just hope my body would do what it always had and get better on its own, before trying to go back to work again in March 2019.
I lasted barely 4 weeks back at work. The commute (a 25 minute bus ride) was more or less finishing me off before I’d even arrived. Another 6 months off saw me deteriorate more slowly. I managed to find a more local NHS GP willing to take on new patients and got lucky to find a solid GP. He was the first one to mention the possibility that it might be ME/CFS. He referred me down several pathways before I ended up with immunology and, after a few more tests to exclude other things, I was diagnosed with ME/CFS. The diagnosis came just in time because about 4 days later, in around October/November 2019 I returned to work for what I didn’t realise at that time would be the final time. I was determined to beat this through pure willpower alone. What an idiot I was. We all think we’re the masters of our own bodies, don’t we? Until we’re not.
I reduced my hours, went part time so I could work 3 part days and have 4 days off. The 4 days obviously being for recovery. I didn’t know what pacing was at that point, I had no idea about things like ‘spoon theory’ but through trial and error I’d become painfully aware that I was regularly crashing and my body needed to recover. By January 2020 the world had started to tentatively prepare itself for Covid lockdowns and I was being readied to work on Covid data to assist other departments who were being overwhelmed.
During that first year of returning to work I’d also been referred to the local ME service at Broadgreen Hospital. A few group sessions really opened my eyes to how varied and severe this illness could become. I then had a dozen or so calls from a very pleasant occupational therapist who offered advice on pacing, managing activities etc. It initially felt promising but ultimately helped very little. In the end it was a relief to be discharged from the service as the regular calls were wearing me down more than they were helping. My GP also referred me for CBT which, to put it politely, was less than useful.
By September 2020 I was having minor surgery to correct a deviated septum and following that my deterioration from mild to moderate began. Whether it was the anaesthetic, the surgery itself or simply due to my body finally giving in after being back at work for a year, I don’t know. But I was never the same after that. I managed a few months of working from home before my final period of sickness began early the following year.
As I write this now, it’s been around three months since my contract was terminated. After a final period of almost 20 months of sickness, we both agreed it was for the best. What started as mild breathing problems and fatigue in July 2018 had progressed to severe breathing problems, crippling fatigue & exhaustion, PEM, muscle weakness/pains, internal tremoring, deteriorating cognitive function & eyesight, peripheral neuropathy, neurological pain and much, much more. Everything is almost too much now. Even writing my story here has taken me almost 4 weeks & managing myself carefully every day to get it all down. You may notice that a lot of my story to this point seems to involve work. It may give the impression that I was very career-driven or really cared about my work. Neither are true. Work was never more than a means to and ends for me. But I mention work so often simply because I believe my deterioration is intrinsically linked with the fact that I believe, for many of us, the effort to maintain our life, our work, our relationships & to ‘keep up appearances’ is often what pushes us over the edge, where ME is concerned. In the early years we don’t allow ourselves enough time to rest. That’s a theme that I’ve come across a lot: many of us got so much worse because we wouldn’t stop when we needed to.
Often that’s because society doesn’t allow us too. We need to work to eat, to have a roof over our heads, to simply exist and society – particularly British society – doesn’t like or abide sick people. If you’re sick, you simply have to push through or you’re a burden. Sure, support is there but you have to fight tooth and nail for a pittance. So you push through because the prospect of admitting you need help, that you can’t manage this anymore is too much. And pushing through is probably one of our biggest enemies. I look back in regret a lot about the fact that I didn’t stop pushing through sooner. I’m sure I’m not alone.
Prior experience with ME
It’s only in recent years that I’ve become aware that July of 2018 wasn’t the beginning of my first brush with ME. It happened in around 1994-95 when I contracted chicken pox whilst on a crappy ice-skating rink at my cousin’s school. I’d have been 13-14 at the time. I was ill for 2 weeks and then recovered. But slowly, over the next month or so I started to get ill again: extreme fatigue, muscle weakness, pains in my chest, arms and legs. Weirdly it really affected my eyesight and after some examination it was found that the muscles behind my eyes had been severely weakened. Doctors, my school and some family didn’t believe it was real and assumed what was happening was psychological. Eventually I was told it was simply ‘post-viral stress disorder’.
All of this lasted for around 12-18 months & I simply spontaneously recovered. Just like that. Seeing how many people become ill around that age and never recover, I now consider myself incredibly lucky that I was able to have about 90% of a life after that. But it’s only in recent years, when I’ve had plenty of time to reflect, that I’ve realised I never did fully recover. I was always more tired than most. Work took it out of me more than my friends. By Friday night I just wanted to go home, have a couple of beers and sleep. It’s clear now that I only mostly recovered that first time around, there were definite leftovers that lingered for many years.
Plenty of time to reflect
Living with ME is like being in a toxic relationship with somebody who just takes and takes. Never given anything in return. Always taking. It takes your health, first and foremost; the most obvious thing. Then it takes your job/education/career, your independence and your sense of self. Then when it’s taken all of that it comes for your relationships and, with that, goes your life. You’re trapped, you can’t get out and you’re too sick and exhausted to do anything about it. In the last 5+ years ME has taken my marriage after the toll on my health became too much of a strain on it. It’s taken many friendships, my job, most of my hobbies, my ability to run, hike, cycle, climbing.
But perhaps one of the cruellest things it’s taken away is my ability to walk. I can still mobilise around the house, to a degree but that’s my limit. In that, I still feel incredibly fortunate, as I know many aren’t even able to do that. I used to love just taking off on a long walk, putting my headphones on and just getting lost in what I was listening to. Blocking out the outside world. It helped me recharge. It helped me reset my internal batteries and refocus. I loved walking that much that I never learned to drive; I just didn’t feel the need when my legs could take me anywhere. I’d sometimes manage 25,000+ steps a day and despite feeling utterly exhausted, it was a good exhausted. I felt pumped and happy after a long walk. These days it’s just exhaustion but without having had the pleasure of a long, relaxing walk beforehand. Like that ‘ME hangover’ feeling without the pleasure of having had a good night prior to it. I mean, how cruel can an illness get?
As bizarre as it may sound though, there are a couple of positives that I’ve manage to find in the last few years. The first is that I’ve discovered a fantastic, helpful, supportive and knowledgeable community of people with ME & other chronic illnesses on social media; a mixture of long-term patients and medical professionals who genuinely care for and are trying to help and support us. Mainly on Twitter. I’ve learned so much and managed to connect with so many people who just get it. It may not seem like it when you’re healthy, but it helps. A great deal.
The second thing is that moving toward the more severe end of moderate made it agonisingly obvious that I was autistic. Over the period of a couple of years I read other people’s stories, learned what autism actually was and gradually realised that I’d been masking for 25 years and part of my difficulties in becoming more ill lay with the fact that I hadn’t been able to successfully mask for a long time. It’s still only been 10 months since I had it confirmed via assessment so I’m still working through a lot in that regard, but to say it’s helped me to take a lot of pressure and blame off myself and to look at myself in a new light would be a colossal understatement. It’s been incredibly revealing, enlightening and helped repair a lot of damage done over the years, particularly things I blamed myself for as I became more ill.
Like all of us I’d love to return to full health, to get back to doing what I used to do. In the countless hours I’ve spent on my own, living in my head I’ve thought about how I’d be different, I’d do things differently, I wouldn’t waste away in a job I didn’t care much for, or bother with people I didn’t really like. I’d make every second count. I’d do the things I loved, I’d try to make a difference, and so on. But as the last 5+ years have gone by I’ve learned to temper my expectations. I’m not greedy. Right now I’d give anything just to be able to stick on my headphones, block everything out and just walk. Anywhere, for as long as I wanted, with no limitations or payback afterwards.
Smile of the month
What’s made you smile this month? Each month we ask this question on social media and we love hearing the responses. We hope by sharing some of your smiles it can help others to find a smile too.
Thank you to everyone who has supported us this month. We are so grateful for the kindness and generosity which enables us to continue sending Smiles to those affected by ME. It means such a lot thank you.
A big thank you to Beehive Preparatory School who fundraised for us with their Non-Uniform Day and Pancake Tea Party. Thank you to everyone involved helping to raise money and spreading kindness to others.
A special thank you to Emma who donated some wonderful handmade crochet items.