Somehow, I've always found an excuse not to write it - too self-indulgent, perhaps, not as important as linking to new information about the condition, so much other information to get out...and all of that is, of course, self-deceiving bobbins. I haven't written about how ME entered and smashed up my life because thinking about my life pre-ME, how much I loved it, all the possibilities I thought I not only had but would always have - hurts. It hurts a lot. Admitting that it's gone, and isn't coming back, still makes me want to roll about on the floor like a toddler in a tantrum yelling "it's not fair!!!"
However, it's Awareness Day and I'm all out of excuses, so here goes.
My answer to those who assert people invent ME for themselves to escape from their horrible lives is just this: my life the month ME arrived was sweet. It was so bloody sweet that it hurts to remember it.
It was Autumn but the garden was still full of late roses. I loved that garden. My new(ish) partner and I had moved in together in the Spring. We adored the house we were renting - we admitted to ourselves that we secretly hoped one day to buy it, once we could afford it. The joy and excitement of having a new partner (now my husband) hadn't faded an iota by Autumn, it was simply enhanced by a growing sense of deep contentment. We had begun to talk seriously about starting a family.
I had a job I loved - working in the Historical Record Office at Huntingdon. Who would have ever thought my History degree would come in useful for work? I loved the people there, the work fascinated, I loved the smell of the old documents and brand new storage boxes. It seemed seriously possible that my employers would support me in studying for a full Archivist's qualification.
Physically, I was fitter and thinner than I had been in years (I know, way to be shallow, but I do miss it!). In 2003 I'd taken part in a 100km sponsored trek in Iceland, fund-raising for Macmillan. By 2005 I was no longer quite at that level of fitness but I was doing pretty well. After all, m,y job required me to run up and down stairs a dozen times a day, as well as climb ladders and lift boxes/books. I was wearing size 10 clothes (hard to imagine for anyone who has only ever seen me weighing in at my current size 18).
Then I got flu.
That's it.
One of those hard, fast, 72-hour flus. (Tests said it was 'influenza B, if that means anything to anyone.)
And I never got better. I seemed to simply stay in the aftermath stage anyone who's ever had real flu will recognise - exhausted, aching, head full of mist and glue, dizzy, sick, sweating, weak as a kitten, sore throat, swollen glands. I felt almost exactly as I had when suffering from glandular fever, but tests showed it wasn't that this time. Trouble was, they didn't tell me what it was.
My GP did her very best to help. Come December, I was still signed off work with 'post-viral fatigue'. My doctor told me she suspected ME, but that couldn't be diagnosed until the symptoms had persisted for six months.
In January, I tried to return to work. Major mistake. The people I worked with couldn't have been lovelier - but my employers, the County Council, couldn't have been less help.
I was supposed to try a slow and gradual return to work, one that recognised I might at first manage no more than an hour a day. All the physically-demanding aspects of my job were to be set aside - I wasn't to climb ladders, fetch anything from the downstairs document storage (the office where I worked was on the first floor and there was no lift). No lifting at all, ideally. This, I hasten to add, was the recommendation of the Council's own medical staff, by whom anyone longterm sick had to be reviewed.
I'd been prescribed amitriptyline to help with pain and disturbed sleep issues. It did help somewhat, but taking it at night left me muzzy and 'out of it' most of the morning - certainly unfit to drive to work. So I was to try working in the afternoons.
Did I say my employers were unhelpful? What I actually mean is, they were fucking evil.
Within a fortnight, there was pressure to know when I would be back up to full hours. No chance was lost to make me know how hard I was making life for my colleagues by not 'pulling my weight'. The Record Office had only 2 spaces allocated for 3 employees in the car park next to it - and they refused to allocate one to me, meaning I had to park in a public car park ten minutes' walk away - by the end of a 40-minute drive and then that walk I was generally ready to collapse and go right back home. I started simply parking my car on the pavement outside - if I got a ticket I'd just have to deal with it.
Of course, the Council's doctor had recommended urgently that I be transferred to the Cambridge Office, which I could reach without a long drive - I could,in fact, drive to a Park and Ride 2 minutes away from home and get a bus that stopped outside - and which had a larger staff which would be less impacted by my shortened hours and reduced abilities. Without the long journey,I would hopefully be able to work more hours. One of the staff in the Cambridge Office would happily have job traded with me, since she lived in Huntingdon...or I could be transferred to a different department for desk-only duties.
But my employers wouldn't do this. Don't ask me why they insisted I saw their doctor then ignored his decision and recommendation. The obvious reason seems to be the true one - they did not want to abide by their own code of conduct with regard to a severely ill employee, so they made life so difficult that I would quit. This is a County Council that employed literally thousands of people, but I was asked to believe there was not a single department to which I could be transferred to do less physically-demanding work.
The predictable happened - I got iller and iller and relapsed. And in the middle of all this, my grandmother died, causing my mother to become very ill indeed - and I had to keep travelling to Cheshire to try to help. My doctor was now diagnosing me with ME for certain.
Just to repeat that - my doctor made that diagnosis. I had barely heard of ME. I don't know where this public fiction of crazy ladies self-diagnosing with ME then 'doctor-shopping' till they get one who will agree, comes from. I can tell you, it's a hurtful and insulting image - insulting not just sufferers but their doctors.
At this point I decided to let my employers win, and I left my job. I was too damn tired for a fight - every ounce of energy was being spent just on getting to and performing those limited hours of work while being subjected to constant pressure. There was no life left outside that, for me or my partner (who was now my fiance, brave man that he is). Yes, reader, I quit. It seemed that it was a clear choice between fighting to stay employed and making myself iller every day, or giving in and trying to get better. Except for the occasional proof-reading contract (and a tiny joyful time writing for a children's book on dinosaurs) I haven't worked since.
Oh and - I also have never claimed a penny in benefits between then and now. Cowardice again - I have met too many made sicker by fighting the benefits system, and we decided that we would rather stay a bit poorer than have our lives revolve around a constant fight and series of aggressive reviews. I had the luxury of that decision, courtesy of my 100% supportive partner. Many don't. I really believed then that if I gave myself a year, really focussed on getting better,I would recover - at which point I would go out and get myself another job.
I noticed an odd thing, after I left work. I became invisible. I was no longer part of any 'system'. While I was still employed, my health was regularly monitored, because I needed to be certified as fit or sick for work. Once that was no longer necessary, there were no review appointments to see if I were better, sicker or the same. I didn't require check-ups to assess my entitlement to benefits, because I didn't claim any. And so, my health simply fell into a black hole. I started doing my own research into this weird condition I was told I had.
One result of this was that as Summer approached (I'd now had ME in my life for about 9 months) I went to my GP explaining that I felt as ill as I had back in the Autumn, and asked if I could be tested to rule out any non-ME possibilities such as lupus. By now I was desperate to know what was wrong, what was happening to my body, concentration levels, life.
I was sent to Addenbrookes to see their 'ME specialist'. I do wish I could remember the name (I suppose I should request my records). I had bloodtests, scans, x-rays...and there was nothing to explain what was wrong. It was officially official - I had ME. As you might expect, one of my first questions was 'so what does that mean - I mean, how long am I likely to take to recover?' Because still no one had told me that you don't recover. And the specialist said:
"You will be completely recovered in one to two years. Anyone who thinks they have ME for longer than that has a mental problem not a physical one."
On the basis of this inaccurate and irresponsible statement, we decided to stay in our beloved house and break into our savings to pay my share of the rent. Because, after all, it was only for two years at the most! We could just about manage that, and once I was back at work we'd pick up where we had left off in Autumn 2005.
In the meantime, I asked my GP if it might be possible to see someone for dietary advice, as many people seemed to have managed to reduce their symptoms by changing diet, checking for allergies and intolerances, etc. My doctor regretted to advise me that I stood no chance of being referred for this - 'if you're not diabetic, you'd wait years'. But she did have one thing she could offer me. She could send my for Cognitive Behavioural Therapy. Lucky, lucky me.
CBT really is a whole 'nother post, so I will be brief about it here. It did not 'cure' me. It did not cure anyone else in the group that I know of (one member was doing it for the third time - did no one see that she wasn't cured?). I wondered frequently which sadistic bastard had decided to hold it on Friday afternoons when some members of the group were still struggling into work for reduced hours and could be pretty much guaranteed to be at their most knackered and ill by Friday afternoons...CBT did, among a lot of twaddle, teach some useful coping skills, especially those closely related to pacing. At the end of the course I was as ill as when I began, but I had some tactics for working 'round' my condition. It wasn't 100% unhelpful,it just isn't in any way curative. No one in the group I was in bought into any bullshit about us having 'inappropriate illness beliefs' and the group leader didn't push it (perhaps because he knew the room would be empty the next week if he tried).
And that was - well, almost it.
It's now 2010. I am not back at work. My physical condition is a little better than it was then -I don't spend half of every day in bed - my concentration and coordination levels are much worse, almost as if there has been an odd kind of trade-off. Dizzy spells have recently added their unique contribution to the ever-changing feast that is ME. I have not been able to drive for the last three years. I have entered peri-menopause and the baby my now-husband and I talked about will never happen.
And my 2005 life shimmers like some luscious, irresistible thing that I once had and can't ever have back. So forgive me, if most of the time I try not to look back at it. Or too far forwards.
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