Saturday, 29 September 2012
After around 20 years of having chronic fatigue I've lost patience with it and decided that something must be done. I'm sick of never knowing how I'll feel from one day to the next or what nice thing I'll be missing out on next. So when my mental health therapist told me about a Chronic Fatigue unit at my local hospital, I moved faster to the GP than I knew I could and asked for a referral. Barely any time later, I was there and things were beginning to looked at.
Chronic Fatigue is a peculiar condition. Nobody is quite sure exactly what causes it and half the time, most of them can't even agree what to call it. It can also be known as ME or Myalgic encephalomyelitis, but even then some people say they are slightly different beasts even though I've never got a straight answer of them as to what the differences are. Neither illness is just being 'tired all the time' or 'yuppie flu'. In the days of fainting couches and smelling salts, it was known as 'neurasthenia'. I'm not fussed how other people describe their illness, but I prefer Chronic Fatigue as I feel it conveys the jist of my illness to people who know nothing at all about it (while also being easier to spell) than myalgic encephalomyelitis.
Unsurprisingly fatigue is the main symptom of CFS/ME, but not the only one. As I said it's not just being tired. Fatigue is more than simple tiredness. It's more like as if part of your very being has changed. It's like wading through treacle, like craving sleep in the same way you do water when dehydrated. It affects mind and body together. It's unpredictable and cruelly with CFS the fatigue tends to be post extertional and out of proportion to the extertion. So while a healthy person would expect to be tired after digging the garden or swimming 5 miles, a person with CFS can be fatigued to the core after taking a shower or taking the rubbish out to the bin. Sometimes the body plays tricks and lets you feel 'normal' while you're doing something like walking round the shops or having coffee with friends, but a level of utter exhaustion catches up with you the next day that is like a hangover, leaving you incapacitated and blurred with a lassitude that cannot be shifted by sleep or rest.
This exhaustion is garnished with other symptoms to enhance just all encompassing it feels. Your brain is fogged, your joints hurt, you have constant headaches, swollen glands, sore throats and a variety of unexplained digestive issues. For me it's best described as having the onset of proper influenza where your body feels barely able move and everything twinges and aches unspecifically while also co-incidentally having a hangover and a tummy bug while in the first trimester of pregnancy due to extreme nausea. While this illness won't kill me or like other people with ME/CFS lead to me being bedbound or needing to use a wheelchair or mobility scooter, it does make normal living bloody difficult and render many days of my life feeling miserable, hard to bear and deeply unenjoyable. The only surprise is that's taken me this long to lose patience with it all and seek help.
But hang on, didn't I just tell you no one really know what causes CFS? So how can you seek help? Well, that's just about the most contentious question in modern medicine. The current treatment for CFS/ME is based round Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) leading some people with CFS/ME to believe that modern doctors see CFS/ME as being all in the mind (or at best a mental illness and at worst a spurious made up invention by lazy people). While I don't doubt that a lot of people are sceptical about CFS/ME, I see the CBT route as being more about helping people cope better with a bad situation. It's used for other illnesses with a fatigue based component like Post Polio Syndrome with varying levels of success as you would expect since no two people are the same and no therapy or medicine works exactly the same for everyone.
However not everyone else agrees. Suffering from Chronic Fatigue is an odd beast. For a start it's the only illness I know that no one can quite decide what it is and where one of the symptoms seems to be competitiveness. Some people say that the illness is Chronic Fatigue Syndrome and that can include people with Chronic Fatigue, post viral fatigue syndrome and Myalgic encephalomyelitis (ME). Some say that it isn't a syndrome, isn't capitalised and is completely unconnected to ME. Some use the names CFS/ME interchangably. Some think Chronic Fatigue is all in the mind and that ME is a neurological illness caused by auto-immune disease or inflammation of the brain or viral infection or some use it as the basis of HIV denial. No one can agree what the illness is, what it's called or how to tackle it.
This makes trying to research the illness almost bloody impossible. You know you're desperate when you willingly Google an illness, but unlike a normal trawl through WebMD or the equivalent, I haven't come away knowing anything more definite about my illness. Instead I've mainly read a lot of people trying to claim a name for their illness and trying to insist that their illness is worse or more real or more serious or more worthy of research or harder to cure or just different to the other person's. A lot of ME sufferers prefix that name with 'neuro' and insist that CFS isn't ME and you must have a diagnosis of ME before you can use the word ME, but not one has been able to tell me how to go about getting a diagnosis of ME instead of the apparently vague and seemingly lesser Chronic Fatigue (let alone whether you have the syndrome or just the descriptor). There's some muttering about how treatments for CFS don't work for ME, but no definition of the difference between ME and CFS so you know which treatments to try.
Realising that the internet isn't the best source of unbiased info, I turned to one of the ME charities. They elaborated that they also give help and support to CFS and post viral fatigue syndrome and use the umbrella term, but don't offer much detail on their site as they understandably want people to join their site and give them money to access detailed information, thus helping the cause. Unsure what exactly I was after, I phoned them to get some advice and was treated to another dose of competition between Chronic Fatigue and ME but with a side helping of patronising when I enquired if they had any info about ME/CFS (their term) and mental health issues? It was spelt out to me as if I was a 3 year old that while CFS might be psychosocial, ME isn't and thus isn't a mental health condition (and whisper, is more serious.) This got my goat for the fact I'm finding it fucking frustrating after more than the half the years of my life having been turned upside down to be told I'm not as sick as (insert correct comparison here) all the time. I also clearly explained that my mental health had developed separately and was given a real blast of disapproval that I'm weak enough to be having mental health issues at all (even though many people with chronic illnesses of all kinds develop them.) I hung up when I started getting a disapproving tone about undergoing the treatment of Cognitive Behavioural Therapy (CBT) at the Chronic Fatigue unit at King's because 'oh, you've only got a diagnosis of Chronic Fatigue, not ME'? as if I'd failed the entrance exam. Not once since I got sick at 14 have I cried over my health, but tears were pouring from my eyes after this scolding.
Well, here's the thing. I've actually got a diagnosis of both illnesses. I've had the diagnosis of ME since 1996 and the one of Chronic Fatigue since 2011. I tend to describe myself as having Chronic Fatigue to people when I have to explain my ill health because almost no one knows what ME is and when they do they associate it with 'yuppie flu' and the term gets me nowhere fast. Chronic Fatigue, while possibly inaccurate, at least conveys the main problem I have in words people understand. I was diagnosed with ME 16 years ago and precisely nothing happened. I sat on the sofa for nearly five years until I felt well enough to enter back into the life someone in their early 20s should have and apart from giving it a snappy title, the medical establishment didn't do much until I went to the CF unit late last year where they gave me a tentative diagnosis of Chronic Fatigue and began running medical tests alongside beginning the CBT programme.
I wasn't thrilled. I was hoping for a bit more to be honest that the not very highly rated online CBT system and withdrawing about a pint of blood each go. I wanted some fireworks, something definite, some answers, not just palmed off with tests that had been run before and therapy that people had suggested was all about trying to convince you that you weren't really ill. I took the self help manuals they gave me and sulked gently until the opening session, preparing to defend myself that I really was ill, even if I didn't know the exact name, and that my mental health issues were not the cause.
My prickles were flattened immediately by both the calm demeanour of my therapist and the sheet of blood test results. Far from telling me I wasn't ill and it was all just in my head, both told me I was definitely sick and in fact, probably sicker than I'd thought. The blood tests indicated problems with my thyroid and Vitamin D levels (which was oddly a shocker to this shade loving SPF wearing agoraphobic) while flagging up further things to be investigated over my liver function, potassium levels and heart, my B12 and folate levels (my very high folate level seems to hint at a B12 deficiency) and my weakened adrenals. I was temporarily thrilled. Underactive thyroids and low Vitamin D levels cause fatigue. All this ME/CFS stuff was going to be irrelevant. I just needed those sorted and I'd be fixed!
So I began the talking stuff while we waited for the bloods to be re-run as comparison. I thought it would be irrelevant long term, but I liked my therapist as a person and was happy to chat to her. Like any good therapist she could get a conversation going and then astutely pick out information you hadn't even realised you'd given. She picked up on several things with me. My routine was poor and I was doing the classic cycle of boom and bust and draining every drop of energy while I had it and then lying drained for days afterwards. I also wasn't eating regularly. And these things needed to start changing.
We began concocting a timetable so that I could structure my day, rising no later than 9.30, eating something within an hour of that and resting at 11am, before eating lunch by 1.30 and resting again around 2, but not napping, popping outside for at least 5 minutes for fresh air and then going to bed by 11pm. I was also encouraged to try and stop what I was doing before I felt the familiar wash of fatigue and rest and return to it. It was all so very basic and considering I'd been expecting to be sent to the gym for 5 hours a day, a bit anti-climatic.
And hard. Really really fucking hard. All these simple basic tasks are rendered awkward and semi-impossible by fatigue, but add in the very disordered thoughts I have about food and the depression and anxiety that robs me of motivation and dynamism, it felt insurmountable. My first 11am rest was a whirling maelstrom of intrusive thoughts, bleakness and reliving as my brain swirled and raged and refused to switch off unless I promised it a long sleep on the sofa. Eating a cereal bar in between meals when I felt my energy drain was like choking down the removal of all I believed in. It was ironically exhausting, emotional and overwhelming. For several weeks I felt physically beyond awful and my mental health was battered and I felt tearful and emotionally battered in all ways, reserving all my mental energies for hating Atos with a passion as the only reason I was sticking with this was to make my migration to ESA easier later in the year.
Using my usual tactic of sheer bloody mindedness and inability to reverse a situation, I stuck at it. I'm not sure for how long as the mental and physical exhaustion seemed to make time stretch and distort, but several months at least. But then one day I started to notice something. Instead of struggling with the emotional hell of resting, my brain knew it was 11am on the dot and I slid onto the sofa gratefully and there was only calm in my mind. I found myself eyes closed, deep breathing, mind neither blank nor racing and feeling utterly refreshed at the end of 30 minutes. It was odd. I haven't felt refreshed by much for years, but there was a distinct boost. I felt rested. And with it, I felt my stamina begin to grow and I felt it less pressing to have to see things through to the bitter end without stopping. I could pause and return feeling refreshed. I was getting much more done and having fewer days of highs and lows. I was 'conserving and preserving' instead of 'booming and busting'.
This is not to say that people with ME/CFS would be cured if they rested more, ate more regularly and just tried harder. Resting and pacing has not cured my underlying illness. It has simply helped me know my own limits and teach me to work better with my body so I give as well as take. I have fewer days where I feel energetic and normal and like I could take on the world and I miss that, but have to remind myself that the pay off for losing those highs is escaping the lows. I've begun to see the interplay between my mental health issues and my physical conditions, but not everyone has that connection to address. My digestive issues haven't improved one jot and I've just grown more frustrated by them as I realise just how much they hold me back. My memory has worsened since I started treatment in February, leaving me unable to recall things from 30 seconds, 30 minutes or 30 days before at times, but fine on 30 years ago. It has not been a magic bullet or a cure all and I have found myself wondering how it would apply to people who are much more incapacitated than me.
But I am so glad I am doing it. I feel it's enhanced my life hugely and it has built upon the treatment I had for my mental health issues (I realised my agoraphobia was also driven by a fear of becoming too tired or ill when outdoors to get home again or become physically vulnerable.) I've become more accepting of being ill. Until now I've hidden it and been ashamed of it because it seems so wrong for someone so young to be so tired. I've made excuses and obfuscated and lied to people. But the last few months, I've learned to be honest about my capacities and so far I've received much more support and understanding than previously. I thought I was protecting people from my illness, but I was really telling them I didn't trust them enough to be honest. A huge cloud of shame has lifted. I no longer feel stupid and like a weak person. I feel able to stand up and say how ill I am.
And that is why I have written this (long) piece. I want to be able to stand up and say something about moderate ME/CFS and current treatment and the possibility of improvement because I haven't seen it anywhere else. I've been reading about treatment for ME/CFS for years and only hearing negative things and it put me off asking for help. I understand that I am very very lucky not to suffer as much as some people do, but only hearing about the most severe cases with this competitive air was one of the things making me repress my illness. I have lost count of how many times I've been smacked down or dismissed by people with ME/CFS on Twitter for (small voice) saying 'I can do this' or 'I am one of the 25% of people with this condition who don't have regular pain'. It made me feel like a fraud just as much as the people who cast an eye over you and say 'but you don't look sick...' It made me feel my experiences weren't relevant or important and that I was letting everyone down by seeking treatment they all pooh-pooh. And it depressed me to never ever read anything positive about life with ME/CFS. I needed to hear that there was a glimmer of hope somewhere out there and I hope that someone else who feels the same will find this post and see that there is occasionally some progress for some people.
I've struggled to write this as I don't want to sound like I'm blaming or bullying people who are seriously ill. That is not my aim at all and I know how damn difficult it can be to live with chronic illness. i also know that many people with ME/CFS have horrific traumatising brutalising experiences with medical professionals and that they have every right to speak about those and that their experiences are not the same as mine. I also know that many ME/CFS sufferers feel unfairly maligned by press coverage of the tiny extremist faction who have challenged medical professionals aggressively over the insistence of only treating the mind despite the body being ill and not researching the condition properly and I don't want to feed that fire. But I do feel rejected and unsupported by the majority of the ME/CFS community I have looked towards while seeking help and I think as that's my experience, it's a valid thing to say. I don't expect to get piles of abuse, but I also don't want to upset anyone and I apologise if anyone feels that way.
But I started writing this blog as an account of how i was rebuilding my life from rock bottom and it would be a notable omission not to mention the improvement in my physical capabilities as well as the mental health treatment I have had. Feeling more confident in my physical self has improved my mental state immensely. I've moved away from my hugely unsupportive GP practice to a new friendly and helpful one. I've seen the dietician and identified some food sensitivities and have a gastroenterology appointment for the rest that I've waited 6 years for. I've been able to work two days a week semi-regularly. I've started tackling my eating issues better and feeling better about my body after years of hating and resenting it. I see my friends more. I'm writing elsewhere and getting out more and trying new stuff. I've been able to do my own benefits claim instead of feeling I don't deserve it. I can now tell Lord Freud and co from experience that all the telling yourself you aren't ill in the world does fuck all squared. I'm more confident and feel less separate from society. And I'm not cured. I'm still sick. I'm just currently feeling more able to managed my illness. That doesn't mean I won't relapse or crash in the future. I'm just enjoying the respite while I have it.
Edited to add: this piece explains well why many people with ME/CFS feel angry about medical progress and press representation without tapping into that competitiveness I feel so isolated by.