I wasn't always ill, you know ;)
I wasn't always ill, you know ;)
Up until late 2006 I considered myself to be fairly healthy, despite having an underactive thyroid and asthma. I worked hard and played hard, enjoyed lots of gigs, trips and holidays and had a lust for life. I loved walking, dancing and going out with my friends.
It started with silly things really, a sore throat every morning, finding it harder and harder to get out of bed (especially on those dark winter days) and increasing tiredness.
SPREAD TOO THIN
I'll admit I was under a huge amount of stress in my job at the time, because for 9 months before I finally walked out, I'd been doing 2 people's jobs. I was busy enough with my 40 hour week before I got landed with another job role worth 30 hours work a week. Soon enough I was totally and utterly swamped. Getting away from my desk was virtually impossible. I remember coming home from work on several occasions, crawling into bed fully clothed, pulling the duvet over my head and just sobbing. I never cooked, and lived off sandwiches, if I ate at all. Soon, my walks to and from the station (1.5 miles each way) seemed like a thousand miles, and more days than not I'd get a cab home as I was so wiped out. Feeding and cleaning myself seemed like too.much.effort.
Then I got assaulted at work and I began to unravel. I tried to hand my notice in and was talked out of it, but one day when dealing with just another in a long line of arseholes, I walked out in January 2008 and never went back.
From my research into Fibromyalgia and CFS over the last few years I've read that sometimes the two complaints come about after a virus, or flu-like symptoms. I had pneumonia in late 2006/early 2007. Pneumonia is a virus. By September 2007 I was no longer able to ignore the symptoms.
The two conditions can also come about after trauma, especially to the back and neck. Before senior school age I'd fallen down a flight of concrete stairs and landed heavily on the floor, leading to temporary paralysis and about 18 months of severe back pain. Then when I was 14-15, I got run over by a Ford Transit van. The wing mirror hit me in the head, I pirouetted like a sleepy ballerina along the side of the van (according to my mate who was there) and landed on the deck unconscious. Cue head injuries, concussion and nerve damage to my face and leg.
Also, having had thyroid disease for over 10 years pre-disposed me to getting further autoimmune conditions, as thyroid disease is autoimmune, and autoimmune illnesses get lonely and want friends.
Also, I'm a type A personality. I hold myself up to impossibly high standards. I always worked like my very life depended on it in every job I did. I worked hideous shift patterns. I put my body through hell. I always put myself last. Always.
UNEMPLOYMENT & PAIN
After leaving my job so dramatically (so unlike me with my work ethic and stupid loyalty) we eked out my last pay cheque and then I started to apply for jobs, but I knew something still wasn't right. A couple of months after I left work, I started doing voluntary work to give my days some structure.
In April, on my birthday day out in Brighton, the first real pain symptom started, and it's one which persists to this day - the inability to lift my feet off the floor without severe pain (it seems to stem from the muscular issue which starts at the backs of my legs just under my bum). It comes and goes, thankfully. Sometimes it'll come on after I've walked 5 metres, sometimes after I've walked a couple of miles, and sometimes - like today - I wake up with it. Also, that birthday night I had a massive night sweat which drenched the bed, and the facial rash also appeared.
It's very sore, red hot and annoying.
2008-2011 THE WILDERNESS YEARS
I first went to a doctor in 2008 about the things that were happening to me, and I had months of tests at the hospital. No complaints with the NHS there. Aside from a load of hinky blood tests and a suspicion of Sarcoidosis from my then-GP, there were no real indications of what was wrong. These were horrible, horrible times. I KNEW I was ill, but most people doubted me. Many probably thought I was just a fat, lazy cow. One doctor virtually told me as much. I got depressed, very depressed.
After my ectopic pregnancy in January, I had a small amount of time without too many symptoms of my lurgy (due to the pregnancy hormones, I expect) and afterwards when everything came flooding back, it made me realise how much crap I'd been putting up with. I went to see a lady doctor at the surgery who referred me back to the hospital. Luck was with me this time, as I got a specialist who saw me as a person, not a BMI.
This bit is crucial - I'd been keeping notes of all my symptoms for months, so instead of trying to remember everything at my appointments I would hand the piece of paper over.
This time, it worked!
If you - or someone you know - is ill and not getting anywhere, here are my tips:
- Change doctors if you're not getting anywhere. I had to see 3 GPs and endless locums before I got diagnosed. Doctors are just like people - some are compassionate, some are awful.
- Keep notes. If you're ill and you have a lot going on, you're going to forget (potentially) crucial points. Keeping notes will remind you of symptoms and could help your diagnosis.
- Surround yourself with people who support you. Excise those who doubt you like you would a cancer. Life's too damn short to live surrounded by shitty people!
- Keep the faith. It's easier said than done, admittedly. If you get depressed, get help, it will make everything else a tiny bit easier overall.
- Trust in yourself. If you KNOW you're not right, fight like a tiger until you get the help you deserve. Your supporters will get you through.
- Never be afraid to share your experiences with people. After I did I found lots of people who were suffering in silence or who were ill and I had no idea. There will always be an idiot who takes the piss out of the suffering of other people, but on the whole most people are wonderful.
It's been 4 long years, and now I have nothing to fight for it feels a bit weird. I'm sure I'll soon adjust! ;)
Life begins again now!
(Just very, very gently, with a minimum of stress, and lots of bubblewrap to protect me from my accidents).
Thanks for reading.
Thanks for reading.