Category Archives: Diagnostics

The Biggest Reality Check of All…

Someone I haven’t spoken to in a while over text sent me a quite innocent message yesterday, with Are you still alivewritten on it. A running joke when catching up after a while. It meant nothing, had no other significant meaning. They didn’t know it was not so this time.

This time, it wasn’t so funny. This time I really meant it when I wrote back, Yeh, just about

It was a literal answer… and one I was decidedly uncomfortable with. Especially when I didn’t tell them that, or why.

How do you answer someone else… Yourself… When the rest of the answer to that question is I could have died…?

I was desperately ill and point-blank refusing treatment and, well, in all honesty and reality, getting close to dying. Literally screaming myself hoarse in agony, until I was lost consciousness from the pain, for hours every day for a month, not realising my body was being attacked by a silent killer, tearing up my insides and leaving me barely conscious on a daily basis. But I still refused any help or medial treatment. The scars, the terror, the shame of the way I had been treated by medical “professionals” in the past meant I was too traumatised, especially in my current state, to go anywhere near them.

What an utterly terrifying thought… and nauseating right now, with 30/20 hindsight. I did it to myself. Unwittingly. But I still did it. And I quite possibly came a bit to close to maybe not making it. I became unreasonable, delirious, the agony too indescribable apart from being able to say it felt like actual torture.

Eventually, it seemed something in my brain snapped and I somehow, for some reason, decided to finally allow my parents to seek emergency treatment for me. I must have finally realised somewhere inside my subconscious my money was up and it was now or never, the last chance saloon. I don’t know because I don’t remember anything of that day except coming to around 5:30pm in a strange place, in a strange bed, somewhere that I only recognised as “a hospital”. Which or where I hadn’t a clue. My mother had to fill me in on the rest.

I was told I was dragged, barely conscious, downstairs and to the car, then taken to the out-of-hours GP service located in the main general hospital on Saturday 27th January.  The time on my discharge note shows it as being logged in to see them just after 12pm. They rushed me in to the Surgical Assessment Unit and ran tests, put me in x-ray and gave me a CT scan. They pushed fluids for severe dehydration and vast amounts of strong painkillers to stop me screaming. I was apparently there for five hours before I became coherent enough to come around, the pain subsided much, but still quite agonising – although nowhere near what it had been – and I had to be told what happened to me and why there were lines in my arm and why I was in a hospital. And especially the question, Which hospital?

After negative scans and intensive blood tests, it turned out I had blood poisoning and a “horrendous” [their words] UTI (urine infection). Specifically, I had contracted Staphylococcus and Streptococcus. And I’d probably had it for weeks, if not months. The entire time I’d been feeling very ill all the way to the point where I’d spent an entire month screaming myself into unconsciousness from the mind-exploding incomprehensible agony I was enduring.

I ended up being hooked up to some kick-ass antibiotics for 3 weeks before I was getting better. But us took 6 weeks before I was given the all-clear to finally go home with clean and clear blood with zero infections left in it. Even when the ococcus infections had been dimming down, I still got 2 other infections on top of it, and one of them remains an actual mystery to this day, but it was so bad I got a temperature higher than I’d even had with the blood infection – hitting 40.7˚C at its worst. They couldn’t find the actual cause (and they looked a lot) so they dumped me right back on the antibiotics (I’d just got rid of that damn cannula the day before, too!) for another week and a half or so.

So, I spent 6 weeks in hospital trying to recover from my stupidity. For the first couple of weeks I felt it acutely that it was a fight, a real battle, to get on top of this thing (or things) and get rid of it. Once I started to get the upper hand, it was a slow but assured ascent to the top of the mountain of recovery. A couple of minor setbacks is expected, and otherwise it was a fairly smooth ride, if not long. Very, very long…!

I was very lucky the people there were really good and helped me with my little Aspie quirks, and were quite happy to help and make it as easy as possible for me. I also  got a lot out of it that wasn’t just my life, or recovery too. I got actually got my life back in a different sense. Whilst I was there, I got more than I ever expected, and although the way I got there was, frankly, terrifying, I clearly needed to go there to get everything I got from it.

Institutionalisation, at certain points of extreme chaos, apparently suits me. It allows me to reset, obtain new and better habits, in a safe environment of regiment and set patterns. Whilst at hospital, their set mealtimes reset my non-functional non-eating habits that for a long time had kept blowing between starvation and binge-eating. Even stopped me being completely terrified of food after realising there were bland and basic things that could be eaten without feeling overwhelmed and shaking. I learned that some medication didn’t outrightly hate me and worked well – and for the first time in 4 years I had adequate pain control that did not require a distillery. It was such a relief. Even anti-nausea medication given alleviated the horrible nausea from the pain and allowed me to eat easier. Even Oramorph for when the pain momentarily got out of control again. Not one single side effect – just what it was made for, for a change.

I actually got people to arrange referrals for me to help with the fibromyalgia, as well as a few followups regarding what I had been through. This was the first time I’d ever received adequate assistance, support and referrals for my condition… and that was probably because this was the first time that medical professionals had spent 24/7 over 6 weeks to see what I was going through. I even had a wonderful OT (Occupational Therapist) organise my being able to see my dog downstairs whilst I was stuck there, and I ended up managing it twice, which was wonderful.

By the time I left, I really was ready to go home. As in I was clear of any and all infections, everything had been put into place, and I was going home with support and medication that was going to make my life easier to live with. It may not have been the best way to end up getting help, but somehow having a serious illness had managed to bring the never-ending freefall of Hell I had been spinning in, and send me in a completely new direction.

Yes.. Life Is Strange…

 

 

 

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Neuro Diagnosis

Got letter of official diagnosis letter. Dr specifies it’s effectively “Hemiplegic migraine” (or migraine variant syndrome) with Fibromyalgia. May or may not get better.

The MRI will show whether or not (presumably and hopefully not!) there is an underlying cause from something other than the pneumonia trigger.

So…. there you go. I’m complicated…

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MRI – The Claustrophobic Miracle-Worker

Had MRI today. I do not recommend them… Squished into a toothpaste-tube washing machine drum that feels like your own coffin fornipnto 45 minutes – not my ideal way to spend a morning…
Apparently they did actually find a brain, though. So there!

*Stipulation: Must admit they did not specify it was On or working, mind… 

 

They’re not pleasant creatures, MRI scanners. However, their inventor and everyone who has had a hand into shaping what it – and fMRI scanners – are, should be lauded and worshiped as magicians and forever lifesavers.. Saints, almost. What their contraption(s) have done revolutionised people’s ability to be diagnosed with neurological and neuropathological – and eve “psychological” conditions.

They proved the true existence of schizophrenia, MS, Fibromyalgia, depression, even Gender Dysphoria (being transgendered). They have also disproved and alleviated fears and suspicions of long-term illness or disability for people. Allowed doctors to see why some people will never walk and others don’t after paralysis or numbness, by giving them the ability to see the spinal cord, discs, and nervous pathways.

Hopefully, today, it will allow them to see I do not have anything to awful causing my weird and god-awful… condition. 

 

life's pooh

 

I was lucky this appointment came very quickly. It was in a temporary mobile unit at the local hospital, rather than the big one that is quite far away. The nurses were so lovely (and I’m completely sure they knew nothing about my ASD), so calm, so confident in helping and their support, that when something looked like it was about to go a little wrong, their support – and my father’s support – helped me go through with it. Just goes to show you don’t need to be “Autism-Friendly” specifically all the time… Just nice.

The thing itself is unpleasant, but they tried their best to make it as not-so-bad as possible. Ear plugs, ear pads, and a big foam pillow under my knees as I lay down, made it as comfortable as possible for me to lie there (they also offered an eye-mask, which I declined). A plastic “cage” (for scanner-tracking) was locked over my face, and I was ready. Well, properly packaged, anyway. I think few people are truly “ready”.

Then I was slowly fed in so it could literally look inside my brain.

Head and neck took about 20 mins each – they took a little extra time because the spasms (usually controlled my Magnesium oil) were starting up and making me twitch or flinch enough to spoil their pictures. Because I did not use the Magnesium oil and had my Pregabalin at the wrong time (the appointment was for the time I take them, and I needed them to be kicked in way before then), I was managing on the essential oil recipe and, well, quite a lot of alchohol – which is never by choice, believe me…

I stayed up all night for this – which wasn’t even a chore because I have a great new game (that would be Mass Effect: Andromeda) and I was utterly scared out of my mind about going through this. I always hate them and they’re horrible, but to get the peace of mind (or answers) you need, they’re necessary, so you put up and shut up. But that doesn’t make them any less scary.

The noises change from a downright trance/dubstep/garage dance beat, to Woodpecker Mode, to hammer-pounding, and all sorts in between (but they’re the main ones). Then there’s silence whilst they check the pictures or move you in the machine. The weirdest thing is the… sensations… the thing gives you too. Tingling, vertigo, disorientation… other things… you can feel where it’s looking by what you feel and where. It’s a strange experience, but one that does no harm (anxiety and panic aside…).

They can – and do – talk to you when they need to, and they will give you some “time checks” when you’re inside, which is helpful. And finally, they’ll tell you it’s time for you to leave. The bed slides out and the bright lights burn the your eyes – or, hopefully, back of eyelids – after being in your little white coffin for so long.

Then… It’s all over.