I don't talk about my chronic illness nearly enough - well, not enough to help other Spoonies out. I'm sure well people may think I bang on about Fibromyalgia and ME allll the time, but considering my health shapes everything, I should/could share a lot more.
A lot of the questions I've had over the years are about my earliest symptoms and how I got diagnosed. I'm going to talk about my initial symptoms, and I'll talk about my road to diagnosis in another post. I'm going to make all the symptoms bold so they're easy to pick out.
It was 2007, summer leading into autumn, and at first it was little niggling things that built up week by week and gave no clue of what was to come. Recurrent
headaches,
dizzy spells on looking upward or turning over in bed, a
sore throat all the time,
motion sensitivity (a short car ride would make me feel very nauseous), being
extra sensitive to strong smells, bright lights, loud noises etc. In September 2007 James and I went on holiday - we'd booked to stay in a caravan park 4 miles outside of Torquay so we could walk miles into town and back every day. I was already pretty fit, but was obsessed with being smaller back then, and wanted to do this walking holiday to shift some pounds. A couple of days into the holiday it became apparent that I couldn't walk like I had done before. I felt awful all the time, and cried with
fatigue a couple of times as we walked into town as I really felt like I couldn't go on. I thought I'd be all right after a few days if I took it easy. It got no better during the holiday, and I felt really frightened as I knew this wasn't
me at all. I went back to work and things got worse and worse. I was
exhausted all the time and would get home from work and crawl under the covers fully clothed and sob as I felt so helpless. I went from someone who worked 9 hour days on my feet, walked 25-30 miles a week, who had a busy social life and who would come home to cook and do housework, to a shadow of my former self. I didn't want to eat, all I wanted to do was sleep, but
insomnia was my new pal. I felt absolutely wretched.
Then my brain started to be affected. I was an administrator in charge of large sums of money and I started to lose the ability to add up. I was
confused all the time, where previously I'd multitasked like a mofo. A simple task took me 4 times as long as usual. I was under a huge amount of stress already as I'd been doing 2 people's job roles for 9 months, and then in November I was punched by a customer and got negligible support from my bosses. They didn't even bother to check the CCTV for 3 days to see who'd done it. In many ways this was the final straw, and just two months after the assault I'd walked out of my job, never to return. I didn't even recognise myself any more. All my sparkle had gone. I'd never walked out of a job in my life, let alone one with so much responsibility, but in my naivety I thought I just needed a couple of weeks of rest and I'd start job hunting again.
Except even rested I felt no better. By this time I'd developed
IBS which went along with the daily headaches, dizzy spells, mental confusion, sensitivity to smells, light and noises, sore throat, and exhaustion.
Less than a year after my symptoms first began, in April it was my birthday and James and I went to Brighton for a day out with my ex colleagues. We had lunch, explored Brighton and in the evening saw Omid Djalili. Sounds great, right? Except
it felt like my legs were being ripped off my body and I spent most of the day in tears trailing 100 yards behind everyone else. I couldn't really lift my legs up, but had to drag them along the floor slowly and very painfully. When we retired to our hotel room that night James had to lift my legs into bed for me as every tiny muscle movement made me cry out in pain. I woke up the next morning and had had a
night sweat so great I'd saturated the bedding and mattress and was soaking wet. I went to the doctors the next day and to his credit he jumped to it and ordered up a bunch of blood tests and gave me a thorough physical examination. His first thought was Sarcoidosis as there were markers up in my blood which couldn't be explained, and a battery of hospital tests were undertaken. By this time I'd started having other problems like
sore eyes,
difficulty breathing, a nasty red
rash on my shins, a red
rash across my nose and cheeks,
widespread pain (as well as the someone's-trying-to-rip-my-legs-out-of-my-hip-socket feeling) and more
drenching sweats, even on minimal exertion.
Depression and anxiety disorder soon followed as my ability to take part in my own life shrank by the day. I grew
agorophobic as I was
often limping with pain and felt terribly vulnerable outside the house on my own. Every day I felt like I had the
symptoms of a cold. My
balance was terrible.
By 2009 I was terribly
allergic to hair dye (a friend had to rush me round antihistamines for hair dye allergy to halt anaphylaxis after doing an inner elbow sensitivity test as my throat was swelling shut) and my conditions affected everything from what clothes and shoes I could wear, which food and drink I could consume and which environments I could be in. Busy, noisy, bright places were hell.
Falls were commonplace, and in 2010 alone I had 6
major injuries - 2 back injuries, an achilles heel injury and more. I also
passed out a couple of times through sheer fatigue. The pain -
so many different types of pain. Burning pains, stabbing pains, throbbing, long lancing pains, deep
aches,
cramps. Pain everywhere from head to foot, especially after exertion. A long walk would leave me exhausted for days. Adding stress to exertion would wipe me out for weeks. When we moved in 2008 I did the packing slowly over weeks and did barely any lifting at all on the day, but was wiped out on the sofa for 3 weeks afterwards barely able to feed or look after myself. By about 2009 I'd also developed
bladder problems too -
urge incontinence related to my menstrual cycle,
extreme pain after eating/drinking certain things (possibly interstitial cystitis),
dry skin everywhere, constant infections
-
styes, throat infections, chest infections, UTIs, conjunctivitis. There was no part of my body not affected, no task I might undertake not altered. My life as I knew it was over, and I was still undiagnosed and desperately needing a name to call the beasts that ailed me, but I had to wait 4 long years for that.
There are many more symptoms and I'm sure I've missed out many, as new ones come along all the time.
These are my experiences. Every person's experience with chronic illness is different. The trouble with chronic illnesses like Fibro, ME, types of arthritis, lupus, MS, Sarcoidosis etc etc is that MANY of the symptoms are shared by ALL of these conditions. It's often a long, exhausting, miserable process of elimination to be diagnosed, and that's without institutionalised bigotry as I experienced on my journey to diagnosis for existing in a fat body.
If you have any questions feel free to ask and I'll help however I can, but my advice is no substitute for a consultation with a doctor.
Thanks for reading,
L xoxo
I'll talk about my road to diagnosis in another post.
I wore this outfit for a walk around St Katharine's Dock in London and the surrounding area whilst James and I were visiting his parents. It was a rare day warm enough to go without a proper jacket, which now seems like a million years away as the spring weather has turned wintry once more.
