May 12th marks the day on which Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS) and Fibromyalgia (FM) are actually recognised. For those who don’t know what either of those conditions are, they’re multifaceted conditions which cause extreme (chronic) fatigue and also muscular/joint pains, which cause impact on daily life and inability to carry out seemingly benign or simple tasks. Everyone presents with different symptoms, different levels of pain and ability – they’re most certainly conditions on sliding scales, and it’s a scale that can slide in either direction at any time it chooses.
I have both CFS/ME and Fibromyalgia. I was diagnosed with ME/CFS when I was 12. I was diagnosed with Fibromyalgia at 21. Neither of these things are going to get better, I have good days, I have bad days; sometimes the good days are there for 6 months but I’m always there, waiting for the bad days to rear their heads. I’m on medication for the fibromyalgia, but it’s not something that is going to cure me – rather it dulls my nerve endings so I feel less intense pain. Unless a miracle occurs, I’ll be on this medication for life. Trouble is, the medication only reduces the symptoms, but it increases other things – like brain fog and general energy levels – some days I’m a zombie.
I posted about my struggles 18 months ago when I had a particularly bad relapse during my final year at uni (can be found here) and I discussed how it was affecting my every day life, how every little like I do was impacted. Since then, I’ve had ups and I’ve had downs, but right now it’s a down part of the graph of life and I’m really struggling. When I look back, on all the things I have achieved in spite of being ill and at times bed bound because my body is letting me down, I do feel proud. It’s that pride in what I have achieved that makes me want to achieve more going forward, just sometimes it’s a struggle to see the future.
Last Autumn I went on anti-depressants. I had made it through more than half my life with the diagnosis of CFS/ME. I can’t remember my life before I was in constant pain, constantly fatigued. Anyone who lives with CFS/ME or Fibromyalgia who doesn’t have a touch of depression, I admire you because 10 years of therapy and many different coping strategies throughout those years, and I was still struggling with a relapse. I was struggling with so much on top of that and I felt so exhausted, so devoid of hope and I just wanted to give up. I didn’t think I was asking for much; I wanted to live without pain, I wanted to just remember what life was like before I was in constant pain, or zoned out on pain killers so couldn’t remember it anyway. I went on anti-depressants because I was suicidal. I didn’t feel like I could live this way any more.
I sought help from my GP – I was fortunate – my GP was fantastic. She always has been so understanding, willing to try anything. She has been with me for the majority of this journey and, after 10 years, she said I must have been exhausted of talking all the time (although, I did get referral to a therapist through work) – and I was. I was constantly exhausted of talking and explaining every little detail of what is wrong with me. She called me, once a week at first, just to check in. Then I started feeling more positive (which didn’t last long, and I had to double my dose because I had completely dipped back to the original place again). I’ve now been on the same dose for just under 6 months and, actually, I’m feeling okay. The first few days were horrific – like I’d been on a 3 day long bender and just woken up but, after that, after the sickness and the dizziness wore off, I was picking up. I still have emotional bursts, I still cry randomly, but I’ve been feeling happy for the first time in a long time – and I think that the tablets are allowing me to feel that. The anti-depressant route doesn’t work for everyone; I was adamant for about 8 or 9 years that I wasn’t going to go down that route myself, but in the end it’s been one of the best decisions I’ve made for my mental health – and my life frankly.
I urge you, if you’re feeling that way, in a spiral of despair and feel like you have noone to turn to – please seek help. Your GP, a friend, a colleague, or contact a charity like The Samaritans – they have both phone based, and web based helplines so even people with anxiety don’t have to pick up a phone.
Anyone who says this illness is all in my head, isn’t real, clearly hasn’t lived with any form of prolonged pain. I am in constant pain – a walk up a flight of stairs makes me feel like I’ve done a 100m sprint. Taking a shower, well I have to save up energy for that, sometimes I have to get my mum to wash my hair because I can’t lift my arms up high enough or stand for long enough (and baths are a no because my dodgy hips mean I can’t get out). The list of things I can’t do goes on, but I try not to think of can’t dos, rather I like to think of the what am I going to dos (granted, this list is short right now, I call it a gap year or two!)
I spoke with my doctor earlier this week, and I need to increase my dosage of meds due to the relapse I’m currently in. I’ve been good for months, physically that is. And I woke up a couple of weeks ago with joint pain – thought nothing of it and carried on as normal. Anyone who knows anything about CFS/ME or Fibro will know “carry on as normal” is bad if you have a habit of overstretching yourself – so I’m now in immense pain, unable to move any distance from my bed (thankfully, it’s a small room, so I can still get to the bookshelves!)
As a scientist, albeit a bit of a failed one (as in I do nothing with it, I still have a 2.1 with Honours, that doesn’t change!) the breakthroughs in research that have been happening in the last year blow my mind. They’re finding so many promising links and possibilities it just makes me so optimistic that, one day, I might have an answer. I’d love to one day be part of a team that gets an answer, it was half the reason I did my degree in the first place. There is a new research centre in the city where I live, with scientists who work at the university I went to. It fills me with hope that one day there’ll be an answer, maybe not a cure, but at least something that can make people realise this IS a chronic illness and I’m not just a lazy so-and-so like so many people thought.
This condition has an impact on so many peoples lives; in my family alone there are half a dozen of us who have CFS/ME or fibro – and I have a small family. But these conditions, they need spoken about because the more you speak, the more people you find actually have the condition, or know someone who does. It’s not about changing the world but it’s about raising awareness of invisible illnesses like these, helping people understand. I know that Spoon Theory has come under a lot of stick lately for not being ‘accurate’ but, honestly, it’s like any theory – it’s an idea to help explain a more complex process.
I’m lucky. I have amazing friends, an amazing family, I had a rocky start at my job but I have really good and understanding colleagues and a manager who is trying to understand and learn how best to support me so I can carry on working where I am. I know not everyone is that lucky, but I found actually being open and honest with my managers helped enormously – being open to questions so they can try and understand only benefited me.
I don’t know how many of you got to the end of this, but thank you if you did. I know this is a ramble, but it’s a subject so important to me that I feel I had to break up the bookish bleather and discuss it. If you want to learn more about any of the conditions, there are some incredible resources out there – and I’m always happy to have a conversation.
Normal service will resume when I finish my next book.