Apparently my parents were updating my grandparents about things that are going on with my health.
Idk what they told them specifically, but my grandparents said something akin to “Why is all this happening now?”
Me & my mum thought that was odd, as it’s not a ‘sudden’ thing.
It’s not like I was healthy my whole life, then all of a sudden this past year my body exploded with issues.
As a child I was incredibly hypermobile, to the point where my nana still shudders at my “party tricks” 😂 I was 9 when I experienced my first dislocation, which was my thumb dislocating. This happened when I closed a desk drawer at school.
I mean c’mon, that should have been a pretty obvious sign something wasn’t quite right 😂
At age 10 I broke my ankle falling off the couch 🙄 And from 13-18 I experienced 5 broken bones (2 of which we were initially told were sprains, but they later admitted were breaks), several concussions, & one full dislocation.
From 10-13 I was seen by many specialists due to issues with my hands. They would suddenly swell, turn purple/black, be incredibly painful, & I couldn’t move them. Most times we couldn’t identify the trigger, although cold was one we knew of. This resulted in a diagnosis of cold urticaria, but drs thought it could also be reynaulds, cold urticaria, or rheumatoid arthritis.
My mum said that “because it happened less as you got older, they blamed it on ‘growing pains’ & stopped being interested. But right up until your GCSEs & A levels it caused issues during exams.” To this day it still happens now every few months – so good job there NHS 😂
Anyway, there were always warning signs that I had underlying medical issues…they were just glossed over, ignored.
All through my 20s I’ve had pain – but how was I to know it wasn’t normal?
Everyone has pain, you ALWAYS hear people talking about back pain, or shoulder pain. You think it’s normal. I didn’t know that my pain was caused by my joints subluxing & was much worse than most people’s.
Likewise I’ve always experienced the odd migraine & frequent headaches. So as they slowly crept up to monthly, then several times monthly, then 4-6 times a month by 2015…I just accepted it. It wasn’t sudden, it wasn’t something I really noticed; only looking back & trying to identify when it got so bad was I able to pinpoint it.
It took us around a year to recognise my seizures for what they were, as againI had no idea they were seizures. You only hear about tonic clonic seizures; I had no idea there were other kinds! I’d mentioned these weird symptoms to my suicidal worker in 2017, & she was totally unconcerned – it was attributed to my bipolar.
It was actually someone on my old blog who first warned us i could be having seizures. They were an epilepsy nurse in the US, and to information from them we were able to track my seizures & identify triggers. This was in 2016, who knows how long I’d been having the odd seizure for…I remember periods of losing myself & time after showers in my mid teens; that could easily nice seizures relating to heart rate from standing in the shower & the hot water.
With my POTS symptoms, I had never heard of POTS. I had no idea my heart was increasing by 80+bpm everytime I stood. I complained to Lyle that I often “couldn’t breathe” or “felt like I was dying”, I complained I was suddenly feeling meltingly hot even in winter…but it didn’t come on suddenly. It wormed it’s way into my life, and I didn’t recognise it as a new symptom. It was just part of my litre, my new ‘normal’.
Myalgic encephalomyelitis was the first thing that affected me in an obvious way, but even that was once it had reached severe. I totally missed it until I hit moderate, & then was unfortunately advised to ‘exercise it away’. So I fought it harder; I was pushing through these terrible symptoms, trying desperately to get better…it made my health deteriorate much faster. I became immensely sick & finally symptoms were un-ignorable 😅
So really, struggling with my health is not new at all.
From childhood, I was not ‘healthy’, but none of it was recognised or taken seriously.
I wasn’t educated on what was wrong with me or what precautions to take. This resulted in my body basically collapsing in my mid 20s . And it’s just been downhill from there 😅
Even after several years of trying so hard to get help now, I’m no nearer to it. I continue to be treated badly by the NHS & not taken seriously. Everything we know so far, all the ways we’ve got to try fight my conditions…it’s entirely down to us, myself & Lyle, & hours upon hours of research, desperately trying to find answers.
The NHS has let me down my whole life. Which is why having to rely on them when I’m now so ill is absolutely terrifying 😂