Not-so-happy Chronic Illness 4th year Anniversary to me!
4 years this month (back in oct 2011) after months of feeling generally unwell a test showed that I had glandular fever in the past, it wasn’t currently present in my blood-but I never recovered. I had constant classic flu like symptoms, swollen glands, recurrent tonsillitis, post-exertional malaise and fatigue/exhaustion which never went even after a good sleep. At this point I wasn’t in pain; I developed chronic fatigue syndrome. It didn’t take long, but my health gradually got worse; I started to collapse and paralyse whilst at school, struggled with the stairs and began to experience daily chronic pain as well as battling the fatigue- it fluctuated, some days were worse than others but it was a daily battle just to get through a school day. I was then diagnosed with Myalgic Encephalomyelitis (M.E) (which causes persistent muscle pain, uncontrollable spasms, paralysis, cognitive dysfunction, joint pain and swelling,migraines and light sensitivity, plus the chronic fatigue symptoms) and a couple months later Fibromyalgia. Which added musculoskeletal pain, hyperalgesia (sensitivity when touched), allodynia, pressure points, voodoo doll type sensations; paraesthesia-tingling, burning, stabbing, itching and numbness to my list of symptoms. Both ME and Fibro are autoimmune diseases. I stopped and started dance, I pushed myself and danced my heart out until I couldn’t anymore. I missed a lot of school in year 9,10, and missed more than half of year11, but I worked hard to get my 5 GCSE’s. I had a 14 week summer holiday to rest up and prepare myself for my second best college choice of fashion design. I never made it to dance collage but I knew I needed a back up in life anyway, so I enrolled in a course that I would enjoy. The first couple of months went quite well, the work load was very demanding, the early mornings were difficult and just getting out of bed every morning was painful and incredibly hard. I fell behind a couple of weeks or so, but it was manageable.
After Christmas it basically went down hill from then. I didn’t have many “good” days at all, my health was deteriorating, I had weeks and months off collage, I missed college trips, briefs and missed deadlines- I was drowned in work. even with pure determination it was impossible to catch up. I got to the point of where I couldn’t physically push my foot down on the sewing machine peddle, or even sit up for more than 15 minuets to finish a sketch before my hands clawed. So I was withdrawn from the course.I couldn’t sit, stand or walk at all and spent months bedbound and living life lying down in severe pain and paralysis with no control over my body.
After months of just getting worse, with a heart rate of 130bpm led down, chest pains, palpations, dizziness, blurred and double vision, blood pooling, poor temperature control, fainting, limited oxygen and blood flow to the brain, bladder retention and gastrointestinal dysfunction I met the most incredible doctor who after admitting me to the heart institute diagnosed me with Postural Orthostatic Tachycardia Syndrome (POTS) which I knew very well about but no medical professional would believe me. It’s an illness of the autonomic nervous system. I was put on heart meds and within a couple of weeks I felt a noticeable difference. I felt my blood pump properly throughout my body and my vision was back to normal. After 5 weeks of rehabilitation I managed to be up standing and walking a couple of meters with a Zimmer frame. Within a couple of weeks of being home I crashed, but I could tell it was only a flare and within a couple of weeks I got over it and got back to my ‘normal’ ill self. But then, slowly, all the symptoms began to crawl themselves back into my body and my life, not a flare this time, just deterioration. Paralysis is back at it’s strongest, and it’s even made it’s way to my right arm and occasionally my left hand. Pain is unbearable, my ME, fibromyalgia and POTS are all at war with each other. I haven’t stood with my frame at all even with another 3 Physios trying to hold me up in 3 1/2 weeks- I only managed to stand with aid a couple times a week a month before that. My limbs are heavy, I can’t twitch my feet. I’ve lost my appetite, I’ve lost a ton of weight. But what I haven’t lost is my determination and will power. I can and I will improve my health although the facts are that I will never recover from this. I will improve my quality of life no matter how hard it is. I will walk unaided again. It will get better. I won’t give up.
Oh what I’d do to be as ill as I was back at school. Although it was difficult back then, I could easily live life with it at that what I call ‘mild’ level. Anything is better than this severe living hell.