Seeking Treatment For Chronic Fatigue – Part 1

As I’ve mentioned before, I’ve struggled with extreme fatigue all my life (I talked about this in my ‘Tired‘ blog post); Myalgic Encephalomyelitis and Chronic Fatigue Syndrome (often referred to collectively as ME/CFS) have been tossed around since I was twelve years old but I wasn’t officially diagnosed until last year. This kind of acute ‘unexplained’ fatigue – unexplained as in there is no obvious cause, such as exercise or lack of sleep – is also a common experience for autistic individuals, as well as related symptoms like headaches and bodily pain.

I’ve been managing these high levels of fatigue for most of my life, trying various things to improve my quality of life. And I continued searching for a cause. I had test after test but nothing ever gave us an explanation. I resisted the ME/CFS diagnosis even as it seemed more and more likely because there’s no cure, not even a reliable method of management, but eventually it seemed the only way to move forward. So, after a long talk with my GP, she officially diagnosed me with Chronic Fatigue Syndrome and we began discussing various options for next steps and support. She referred me to the local Chronic Fatigue Clinic and I anxiously awaited my session.

It was a bitter, heart-wrenching disappointment. I left in tears. Maybe it would’ve been helpful when I first started experiencing these symptoms (I think the longest any of the others there had been struggling was two years) but twelve years in, I knew more than the person delivering the information, had found everything suggested to make no difference or be outright unhelpful, and I just felt so patronised. It was an awful experience and I couldn’t help but feel so angry that this was the best on offer for what I was trying to manage and had been trying to manage alone (in terms of the health system) for more than a decade.

When we spoke to them after said awful session, they referred me to a doctor that we realised I’d previously seen – years and years ago and had a very traumatic experience with. I was obviously very reluctant to go. My Mum and I spent a lot of time talking about it, about the pros and cons of going and not going. The scary thing is that it’s so easy to get kicked off every list with one refusal so I said that I would go, despite having had such a distressing appointment with him – one I’m sure he doesn’t even remember. But before we contacted that clinic, we spoke to my GP again. We explained how upsetting the experience had been and how worried we were that it was only going to be worse this time, considering I would be going in with the baggage of the previous appointment; we told her that I would go if that was how it had to be to continue on this path but she felt that we were right, that it wouldn’t be helpful given the circumstances and as I’d technically already seen him, it wouldn’t cause any problems in the system. We asked if there were any other options and this was when she referred me for the hypermobility assessment (these posts are now out of order, not only because it’s been such a confusing and complicated process, but also because I’ve had trouble keeping things like this clear and ordered in my head since the pandemic started).

I’ve now had this appointment and been diagnosed with hypermobility, which potentially explains (at least in part) my problems with fatigue and pain. (At some point, we’re going to need to lay out all of these diagnoses and work out whether there’s any overlap, whether any of them are now redundant. But that’s a job for another day.) Apparently those with hypermobility are seven times more likely to be autistic, which is a very interesting piece to add to the whole puzzle. The post goes into it in more detail but basically, we’re now waiting to find out whether or not various routes are possible. For example, I’ve been referred for hydrotherapy but we don’t know whether I’ll get it and if I do, when it will be possible with the pandemic and lockdown. That has really stalled things. So it’s one waiting game after another.

But we’re not simply waiting. We – my Mum in particular – are also looking into other angles, other medical professionals who specialise in fatigue or who have studied fatigue in depth. We’ll take any advice we can get. I resisted a diagnosis of CFS for so long because it felt like admitting defeat – an expectation that I would just have to live with it with limited options – but I don’t accept that, not anymore. I’m participating in every research study I can find that I qualify for and my family and I continue to research potential specialists and potential avenues of treatment or even simply more effective management of the symptoms. The pandemic makes it hard but I am not willing to accept that this is going to be my life, that there’s no hope. Not that long ago, NICE (The National Institute for Health and Care Excellence) removed ‘graded exercise therapy’ as a treatment for ME/CFS, after both research and those suffering with the condition proved that it was actually unhelpful at the very least. It’s slow but it’s progress. And I’ll take all the progress I can get.

ME/CFS Research: Photo Diary (Pre Lockdown and During Lockdown)

Not long ago, I volunteered for a research study into ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) and part of it involved keeping a photo diary as a visual representation for how my life is affected by my CFS. Obviously my life before the pandemic and my life now are quite different and so the researcher asked me to include pre-pandemic photos as well, to ensure that both experiences were recorded for the study. The collection of photos (and descriptions) I sent her was very long but I thought I’d do an abridged version to post here because it was a really interesting exercise.

(It’s worth noting that this was put together before I started back at university, hence why there aren’t any current references to classes or assignments.)


PRE-LOCKDOWN

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1. During my BA, I frequently took naps in quiet corners of my university between classes and then at my best friend’s flat when he moved onto the same street as the university. I found the commuting exhausting and the classes were long (some of them three hours) and took a lot of concentration. By the end of the semester, I was often really struggling to wake up to go back for the next class. A few times, I slept straight through both my alarm and my class. Fortunately that only happened a couple of times!

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2. I’m currently doing a Masters Degree in songwriting part time and pre-lockdown, I’d go up to London usually once or twice a week for lectures, workshops, and cowriting sessions. This is an example of one of the assignments we had during the first module, which was called Creative Process.

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3. Because living alone would be too much for me – I wouldn’t have the energy to look after myself, let alone do anything more – I commute to university (pre-pandemic anyway), involving lots of underground travel and multiple train journeys a week, something that I find exhausting. This is one of the reasons I chose to do my Masters part time because it reduced the amount of travelling and therefore allowed me to spend more energy on the course/work rather than on travelling.

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4. At the end of any day that involves hard work or anxiety, I’m utterly exhausted and usually end up horizontal on the sofa or going to bed as soon as I get home from wherever I am. In this instance, I’d just done the assessment presentation for the first module of my Masters – which I’d been incredibly anxious about – and was completely exhausted. Plus the day had involved practicing it in the morning as well as travelling to London and back. I was so tired that I could barely stay awake long enough to eat dinner before going to bed.

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5. I spent most of my days out of uni on the sofa, working on music, my mental health blog, or catching up with my diary, a favourite movie or TV show on in the background because I work better with background noise. I’m usually joined by a cat or two.

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6. As a singersongwriter, I try to perform as often as I can, both in terms of opportunity and having the energy (I once played three gigs in three days after which I could barely function for over a week because I’d just used up so much physical, mental, and emotional energy). That’s not a common problem – managing my energy around the amount of gigs – as there aren’t a huge number of opportunities with so many aspiring singers in the two cities I perform in, London and Brighton. I love performing. It’s the place I most feel myself, especially if I’m singing songs that I’ve written. I don’t feel any fatigue while I’m performing – I’m feeling so much joy that it’s like I’m flying – and I don’t feel any fatigue until the adrenaline wears off, anywhere between thirty minutes and several hours later.

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7. Since getting an Autism Spectrum Disorder diagnosis, I’ve been able to get access to disabled seats at concerts, which does (in certain ways) improve my concert experience. It can be more stressful and it can make no difference at all but at the very least, it makes me feel better. I am in the disabled section and therefore no one can judge me or think that I don’t deserve to be at the show because I’m not dancing around, not ‘enjoying myself enough.’ That makes me feel more able to sit as I need to, which does make the concert experience easier on me and my body. Having said that, I’m not always so sensible out of sheer enthusiasm.

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8. Before the pandemic, my best friend, Richard, and I had almost weekly writing and production sessions. My current EP was made almost entirely by the two of us in various rooms in the various places we’ve lived in over the last few years. These sessions are so fun and invigorating and even when it’s a struggle to find the right words or get the production to sound exactly how I want it to sound, it always feels right. I often feel very drained afterwards because it involves a lot of concentration and communication and we often work for four hours or more at a time. We have had sessions that last all day where I’m barely coherent by the end.

SINCE LOCKDOWN

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1. We have five cats in the house and I’ve been spending a lot of time with them. They’ve always been really good for my anxiety – probably because they are so mindful and live so fully in the moment – but they’ve been an extra comfort during these stressful times. I always try to get a good cuddle in the evenings since I get particularly anxious before bed because I’ve been sleeping so badly and having lots of nightmares during lockdown.

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2. I generally drink at least two Red Bulls a day to keep myself awake and somewhat alert, although I don’t think they work as well as they used to. I’m sleepy all the time, but whether that’s from the CFS or the side effects of my anti-depressants or both, I don’t know. I hate feeling like I need to drink it and I worry about the effects on my health but it’s currently the only way I can stay awake for at least most of the day. My Mum and I are investigating other options, or we were until the pandemic brought everything to halt. We haven’t given up though.

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3. This is my usual day-to-day view at the moment. I have a desk designed for bed or sofa use so that I can work from the sofa, which is more comfortable for me than working at my desk since I’ve been have problems with pain during lockdown (I’ve been referred to various hospital departments but I’m still waiting for the appointments). I’m usually working on my laptop – on my mental health blog, on my diary, on music stuff, etc – and there’s usually a cat draped over me.

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4. I usually have the TV on in the background because I seem to be more productive with familiar background noise, like a familiar TV show or movie. But I’ve also been watching new things during lockdown, both to escape from all of the stress around the pandemic but also as inspiration for my music as not much is happening in my personal life to draw from for songs. This is the very last episode of Agents of Shield, my favourite TV show and I was hugely sad to see it end although the ending was as perfect as the end of something you love can be.

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5. Since face-to-face writing sessions aren’t safe at this current time, I’ve been doing all of my writing sessions via Zoom. I’m currently doing about two a week, mostly with my writing partner, Richard. We alternate sessions: one on my songs and then one on his songs and so on. It’s harder work and not quite as fun or productive as a normal pre-pandemic session (who would’ve thought that not being able to point at something would trip up the creative process?) but it allows us to keep creating, which I’m grateful for. I’m always careful not to plan anything too difficult afterwards because these sessions are really draining and after about four hours, my ability to concentrate starts to fade.

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6. I’ve been playing a lot of piano during lockdown. It distracts me from all that’s going on, I want to improve my skills, and I just genuinely love playing, especially in the lower octaves. I find them very soothing. I can play for hours without noticing the passing time; it’s lovely. Playing and singing for hours is, of course, tiring but it’s worth it because I get so much enjoyment out of it.

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7. Because of my fatigue, I spend a lot of time on the sofa, which can get boring and frustrating, but it’s not so bad when I have my Mum (she’s self-employed, primarily working from home – especially now) and the cats around.

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8. Most days consist of sitting on the sofa, working on my laptop. I’m writing a lot of posts for my mental health blog at the moment, preparing for when university starts again and I have less time to write. My Mum often does emails similarly, keeping me company even if we aren’t actively engaging with each other.


So that’s my condensed photo diary for the study. There are, of course, other areas of my life and other areas of my life that my CFS affects, like food and exercise but I don’t have any photos relating to those. For example, swimming is my main form of exercise but pre-pandemic I wouldn’t take my phone further than the locker room and since lockdown began, I’ve been struggling to find a way to swim that feels safe. I may have found one but I’m trying not to get too excited: I’ve missed it so much and I’m so desperate to get back to it, for my physical health, my mental health, and my relationship with my body. I was also reluctant to include other people; my exception was Richard because our work and social media presence are so intertwined. So there are obviously gaps but I tried my best to give an overview. Hopefully it will be a useful contribution to the research.

DecodeME: A New Research Project For ME/CFS

Back at the beginning of the year, I started writing about my diagnosis of Chronic Fatigue Syndrome (CFS, also known as Myalgic Encephalomyelitis or ME), after struggling with fatigue and other symptoms for over a decade, and the various ways I’ve been attempting to manage it or even treat it. That is still a blog post that I want to write and post but with the pandemic and lockdown, that treatment process has stalled, which has obviously left the post hanging. So I’m going to wait for that treatment to continue to a natural stopping point (it’s likely to end up a series, given how little is known about ME/CFS and how difficult it is to treat) before I round off that post.

BUT something has happened fairly recently and I felt that, regardless of my own story and my own progress, it was too important not to post.

In June 2020, the Medical Research Council and National Institute for Health Research awarded £3.2m to a new ME/CFS study called DecodeME, the largest ever study into the condition. Work will begin, all being well, in September 2020 where DecodeME will look at samples from 20,000 people with ME/CFS, with the intention of discovering the tiny differences in a person’s DNA that may affect their risk of developing ME/CFS, and the underlying causes of the condition. The hope is that this information will further the development of diagnostic tests and targeted treatments for the condition. You can still apply to be a volunteer here (although you will not be held to that application when the study officially begins) and there’s more information here, on Action For ME’s website.

This is huge news as there is so little knowledge around ME/CFS. The world over, people with the condition have been at best ignored and at worst left to die. My experience is extremely common: I was half-heartedly diagnosed and then abandoned by my doctor. It was never mentioned again and I was left to manage it with only the help of my family. I was reluctant to pursue the CFS diagnosis more aggressively because I’d been told that there was nothing anyone could do to help me. I wanted it to be something else. But eventually I was done with the waiting and the lack of engagement from the medical community. I told my doctor to put CFS on my file as the official diagnosis and have been following various routes of treatment ever since. As I said, I want to talk more about this but I think it’s best left to be its own post.

But this study gives me real hope and I’m so excited to be part of it, part of something that could change not just my life but the lives of so many people. It’s unacceptable that the medical community have abandoned such a large group of people and moments like this feel like new beginnings. I’m excited and inspired and determined. And if nothing comes from it, then I’ll move on. I’ll find something else to try. I’m not giving up. To simply accept that this is my life is not an option.

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