Not with a bag, but with a whimper. Part 1.
My health has never been the best. In fact, it’s been rather rubbish since age 12 – that’s when I first remember visiting the doctors regularly for problems that should have gotten better. And, that’s the theme of this blog post – what should have happened. This is a relatively brief account of my past 12 months battling doctors, my body, and in the end, hospital. I’ve split it into two because it’s heavy reading – and writing.
I started getting leg pain around March last year, it was unusual for me to get pain in my lower body as up until now it was the only part of my body that would usually function somewhat normally. No one knew what was going on – my main GP said it was my shoes, and that it should get better once I had some foot support. The private GP I saw once my NHS GPs gave me the same answers time and time gain said it might be my fibromyalgia, but it should improve.
Then I got a random bruise in a vein on my right calf. Everyone said it shouldn’t cause me any problems. But as soon as that bruise appeared the pain spread in an insidious way. First my big toe hurt – it felt as though someone was dancing on my vein, cutting the blood flow off, waiting a beat, then jumping off. Then my calf hurt, a continuous cramping sensation that no matter how many bananas I ate or tonic water I drank would rid me of. Then the left side joined it – it started to swell, become hot to touch, and look like I’d spilt red powder all over it.. The right side at this pointed started to chip in with swelling, shooting pain, cramping pain, and crushing pain. It was delightful.
In July, it got to the point where the pain left me breathless, and unable to walk. Well, I could theoretically walk, just not very well. A ‘quick’ trip the length of a bus left me crying, shaking, and in so much pain it would take my body days to recuperate, if not weeks. I wish that was an exaggeration. The doctors told me that shouldn’t be a happening.
Then came the garage of random ideas. Foot massage should help, elevation should help, these random dietary and lifestyle change should help, this medication primarily used for depression should help, water tablets should help the swelling this medication primary used for epilepsy should help. Nothing helped. Painkillers din’t touch the pain, nor did any amount of doctor prescribed medication. They were baffled, but the worse was yet to come.
The burning started in October.
I’ve never walked on scolding hot pokers, but I imagine that’s what it feels like. The burning was constant, and just … awful. I’d never wish it upon my worst enemy. There were times nothing touched the pain, but that didn’t stop us from trying.
The pain crept upon me not with a bang, but with a whimper. It was devious in nature, almost like a slow poison creeping through my veins. It invaded so much of me that the idea of a break from it was laughable, and from late September to late January the following year it was constant. The Gent can attest for that. We slept in one or two hour bursts as by this point cold packs were my closets friends and as the heat from my legs and feet heated them up the pain would be at the forefront of my unconscious brain. I was surrounded by at least two fans constantly chilling my lower half, whilst simultaneously attempting to keep my upper half warm with blankets and heat packs Just because my feet were taking up all my attention didn’t mean the rest of my body was giving me a break – no, if anything it heightened everything.
But, of course – none of this should be happening.
We were both grouchy, after all sleeping in small bursts isn’t good for REM sleep. And, whilst all this was happening I started to notice I was losing bits of my sight, and my hearing. It was like everything was malfunctioning at once, and no one knew why. There were doctors appointments scheduled in every week, and specialist appointments crammed in between. It got to the point most people with an invisible chronic illness know all too well – the suggestion that it’s psychosomatic. This idea stuck with doctors until December.
Of course, during December my body decided it wasn’t dealing with enough, so out of the blue I developed a kidney infection. To this day, I don’t remember having any warning symptoms of a UTI. Having swollen, burning feet, and needing to pee every five minutes – also an act that leaves you screaming thanks to blood clots leaving your urethera is not a good mix. I spent two weeks in a haze of throwing up, sleeping poorly downstairs, being escorted by the Gent (my balance was shot, and I was a fainting risk) completing painful trips to the toilet accompanied by a screaming pillow that supporting my stomach, and being so malnourished I was on the edge of fainting most of the time. I was told repeated by my doctors I should be fine. In hindsight, I really should have ignored them and gone to hospital. But, hospitals are warm, and I was terrified of the heat. I actively avoided situations where my feet would have to be in heat, to the point I’d arrive a little late to the doctors because they always run late. It felt like an odd phobia to have.
Towards mid-December we saw the light at the end of the tunnel with the the kidney infection, and then everything became so much worse.
Part 2 coming soon.