Day 2
How have these illnesses affected your life?
Well, chronologically I got asthma first. It meant I had a lot of chest infections (still do) but it only affects me badly then. Then in the late 90s/early 2000s I had a period of ill health, until I was diagnosed with an underactive thyroid gland. It was a really difficult time as I was under a lot of stress at work at the time (which I think ultimately led to me developing the condition) and I was beyond exhausted. I'd walk 2 minutes to get the bus to work, sit on the bus for half an hour, and by the time I'd got into work I had to lay down on the floor in the back and cry as I was so exhausted. It was horrible. I thought I was going insane and when a doctor finally took me seriously I skipped home from the doctors surgery. When I started treatment I soon started to feel better and went back to being a bit of a party animal again. I did calm down a tiny bit when I met James in 2003, but I was still burning the candle at both ends.
Then in 2007, again working at a very stressful job (do you see the pattern yet?!) I started to feel exhausted again like I did before I got the hypothyroidism diagnosis. Then other things started happening - constant dizzy spells, migraines, and mental confusion. I carried on at work for another 6 months, all the while deteriorating swiftly, until things had got so bad that I walked out of my job one day and never went back. I started to look for work and soon realised things weren't going to get better with a bit of rest. I went to Brighton on my birthday in April 2008 with James and some ex-work colleagues and out of the blue I couldn't lift my legs off the floor so much as a few millimetres without being in enormous pain. This 'weekend of fun' we had planned involved me dragging hundreds of yards behind everyone else all weekend crying in pain.
A couple of months after I quit work I decided to keep myself occupied/disciplined by doing voluntary work, but had to stop as I was suffering so much. I had roughly about 6 months of rest, then I got a part time job (15 hours a week) which I did for almost a year, and that took such a toll on me I was constantly injured, so once again I had to stop working. That was about 3 years ago.
So how has it affected me? Before I worked too hard, played hard and didn't look after myself at all. I had a busy social life and was hardly ever off a train because I was always going to visit friends & family or going to gigs. I never stayed still. I had no concept of relaxation, let alone striving to do it more! For the decade I lived near Gatwick I took advantage of the good rail links and went into London 2 or 3 times a week, visited my friends in Manchester often, and went to loads of gigs and festivals. I was incredibly independent and put myself at great risk by travelling on my own late at night, but I thought I was invincible. I'd had a hard upbringing in a hard town which culminated in living a hard life and I was a tough little bastard. I often went to work on a couple of hour's sleep, if that. I walked everywhere I could, was worked with men in many of my jobs and was no 'weedy' woman in comparison - I held my own. I thought I was Superwoman.
Now I don't work, I'm in pain a lot, and I stopped counting my symptoms when they got to 3 A4 sides in bullet points. That was a few years ago now and new symptoms come up all the time. Every day is different - I never know what each day will bring me. I'm not very mobile these days - even if I did feel like I might be able to do a lot of exercise one day, if I do it'll come back to bite me in the arse the next day, or for several days. The hardest thing for a chronically ill person to deal with is the constant need to weigh tasks up against the cost we know we'll pay. It took me about 3 years to work this out. 3 years of trying to prove to myself I'm still strong and that I can do normal people things like take a long walk or carry some heavy shopping home. 3 long years of boom and bust, of overdoing it then spending teary days and weeks on the sofa recovering. For a few of those years James didn't get it. It took him to see me fall LITERALLY a few times before he got it. How is it a person's legs can just stop working when they're going up stairs or putting one foot in front of the other, the scientist in him might have wondered? He sees everything in black and white; demands a reason for everything. Once he stopped thinking so clinically and started counting the bruises, wiping away the tears, eventually he got it. Now he's as gentle on me as I am.
So much of illness is loss - loss of self, loss of self esteem, loss of good health, loss of employment, loss of earnings, loss of your future as you'd planned it. I try to focus on what it's given me - the chance to slow down, the chance to take better care of myself, the chance to eat better, the chance to appreciate all the people who stayed with me throughout it all, the chance to be thankful for my husband who is such a good man.
Had I not developed Fibromyalgia and CFS I probably would've died young of a heart attack or something equally as horrid. Obviously you never know, but I feel like I've dodged a bullet. Although I hate being a burden on James and hate not being able to support my parents in their old age (I always had this romantic notion that I'd be able to make their lives easier by helping them out financially as they got older) I do feel like it's given me the time to look after myself. I was far, far too hard on myself before and I've decided I want CBT to focus on learning how to think of myself more kindly. I've always treated myself so cruelly. I'd never expect anybody else to put themselves through some of the crap I've put myself through, both in good health and poor health. I've always had far higher standards for myself than I'd expect anyone else to have, and I don't know why.
Now I've got my diagnosis I can start getting over the shock and anger of it all and start learning lessons.
Thanks for reading.
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