Tag Archives: weather

A Futile Fibro Flare-Up Day…

Temp| 8°C

Still can’t think beyond the pain. My brain is zoned out.

I’m in no shape of, or for, anything.

Done naught but a few words in Daylio and Jouney Journal, then blindly and mindlessly poking around the internet a little.

Somehow, it’s now 5:30pm. I have no idea how that could have happened. I wanted extra meds to help play Skyrim. Guess that didn’t work out.

It’s horrible outside. Cold, rainy, high Humidity. The isobars are decent-ish at 1016mb. I’m so cold… But I can’t move, and in too much pain to do anything about it… 😣🤕🤨🥺


There are a few emails on my system now that I haven’t read. Refused to read. There’s 2 about the Boots thing, 1 about the Ubisoft problem with Assassin’s CreedUnity (the downloads run at 3mb/s & then the game won’t load anyway), and 1 from Sophie the OT regarding people coming here to install my shower.

I’m too scared to read them. Or, more specifically, I’m way, way, way far too way into OTT & TMI to cope with facing them or processing them, let along answering them…😟😣😢

I don’t know where the “Me” who used to jump at all correspondence, had Zero outstanding emails in her inbox, is avoiding messages and has nearly 7,000 “unread” emails in her inbox 🤯😫😟… 💔

… I could really do with her right now… 



I’m in 9.95 Pain… I can’t think past it, or of anything else, and my mind is blanking to try and deal with it…

  • I’ve been rushing around checking into, and booking, Premier Inns…
  • Mentally preparing for the crapload of Appointments we have to deal with and somehow manage through in May, including 2 big hospital appointments far enough away to require overnight accommodation…
  • I’ve had to deal with the last minute Car Tax thing and go out to do it, causing this latest flare up of agony (because I don’t have a shower)…
  • My glasses got snapped in half, and I had to circumvent my immense panic and Dragon of Disappointment long enough to get new ones.
  • I’ve had a good couple of mini-ish Meltdowns caused by other people…
  • My Catheter came out after only 6 days, and at 10:22pm, of all times… Late at night is *never* good; at least the nurses are great 👍🏻 🙂🤕
  • I’m even more exhausted because my mattress was being mean to me, and causing several nights of extreme pain and nightmares.
  • I flipped the big Hypnos mattress with Dad, and had to empty and redo the bed with Sara.

 


There’s been too much stuff, way, way, way too fast. Too much pain. Too much chaos. Too much… everything-too-much-on-top-of-everything-else.


 

NB: I think the new Food Plan is going to have to go in the bin, for today. There’s no way I am eating between 6pm and 7pm when I am like this. I’ll need at least 6:30pm meds to have kicked in, as well as an extra mini-dose of Oramorph, to manage to eat anything.

Before 8pm, food has no  chance of happening. 😖🤕😣😔

 

Powered by Journey Diary.
Advertisements

Does Nothing Ever Change…?

I’ve been to hell and back. I think maybe I’m still there… but at least my life isn’t on the line anymore.
27th January I got taken into hospital, half-conscious, and apparently in a bad way. They found streptococus and staphylococcus in my blood, along with a “horrendous” UTI and a bowel infection. I’m not quite sure how much longer I would have been saveable for.
Luckily, I’ll never have to find out. They saved me. It took 6 weeks of being under their care, during which I also contracted more UTIs and a mystery infection that sent my temperature to 40.9˚C. I hate to think how much Tazoan [sic?]they actually pumped into me, but I’m almost convinced my blood is now mainly made up of that and coffee now…
Sheldon–What Fresh Hell
It is completely disingenuous now to wondering it if was the right call… And, after all, I’m not in as much extreme pain as I was – is was about 1000/10 by then. Now it’s down to 9.9 or 10/10 … so there is a big difference.
However… To what end does it really matter, when you’re half-dead anyway? A brainless zombie who is still in the utmost of pain, lost in the system, broken beyond repair, not even the ghost or shadow of a shell of what I once was?
I have a catheter because I can no longer control my bladder – or feel it. And it doesn’t even want to stay in. I cannot walk or dress or wash myself. I can no longer drive, or shop, or go out, do chores, tidy up. I have no control over my environment because I can barely move.
I have difficulty eating, moving, functioning. I have zero quality of life.
No one would ever keep a dog or a cat in this state. The humane thing would be to let it go. And yet, because I am human, there is no humanity given. Instead, I must just somehow “put up with” being tortured every second of every minute of every hour of every day… for years. Five, to be exact. Well, it will be in a few short months.
Nothing ever changes. Fine – yes, I have painkillers now that make it a little better. But now the new storms have hit (Thank you, Storm Hector…), again. I’ve been rendered completely buggered once again. There is no mercy here. Just tragedy and trauma everywhere you look around. Unable to ever comprehend, never being able to correlate, just whathas happened here to me. How far I’ve fallen. How much has been lost… destroyed… 
Being eaten away, drained of everything I am, by a condition no one seems to know anything about. By one that took away everything I worked my entire life to achieve. That took away everything that I was. Who I was. What I was.
 High Pain DayI fought my way to the Summit of the mountain I climbed, and in one fell swoop I was thrown off, plummeting to the bottom of the deepest mine beneath, crushed, broken… and no one heeded my screams nor saved me on my way down. Now, I am a nothing… and I was so close to being a something… something I really wanted to be.
I was about to achieve what I had wanted my entire life – I was about to join a career-making opportunity, based on skill alone… despite not having a single official qualification for IT, and based entirely on my own brain and ability. Just a brush away from a proper salary, a permeant contract, a proper job. With one of the most incredible NHS hospitals in the country.
All gone because of something no one wanted to stop.
That plummet, bouncing, crashing, falling, spinning, all the way down past the ground level I began at, straight past it and crashing – broken into too many fragments to ever count – onto the bottom of its deepest mine… Looking all the way up… Wondering how in all Gods’ name did I get down there, and how in all Hell on Earth I was even going to attempt to get up, let alone get all the way back up there…
Holding On
Now it’s nearly Five Years hence. It’s been a living nightmare. A waking Hell. Walking the darkest horrors and enduring torturous months and years that Satan himself would balk at.
And I am genuinely wondering why I am here… How I came to be here… How was I ever supposed to be OK with the trauma of being left and ignored for all those years, until I was broken beyond repair. Listened to only because I came close to very nearly not being here from blood poisoning… and only then given a little help. Where were they when I needed it, before I got here? 
Before I was left crushed to dust with nowhere to go, unable to move or walk or even go to the bathroom… Before I needed a wheelchair and my parents to even begin to do anything?
I can’t have a shower unless it’s at a Premier Inn – who have amazingly easy to use img_0904shower wet rooms, and cute, comfortable bathtubs too. I went over 2 months without a proper shower – barely struggled, badly and horribly had one just after leaving the hospital. I only had one when I went to the Blackburn Premier Inn a couple of weeks ago. And I had my properfirst shower since I left hospital on 8th March. And I actually felt happy and relaxed after a shower for the very first time in a very long time.
Funnily enough, I can’t say anything like that about home. It’s not suitable for use. Yes, I’ve told them. I’m not holding my breath that they’re going to actually do anything about it…
That’s the world I live in… From being fully in control of my life, of my existence, of my choices, of everything… I am now at the Mercy of everyone. If I want to wash, if I want to change my Tena incontenence pants, if my catheter comes out, if I want to eat, if I want coffee, if I want to get dressed, if I need medication, if I need something from downstairs – or even from the other side of the room, if I want to use my own goddamned shower… You get the picture. For pretty much anything.
And the most insulting thing? I get paid to be ill. That’s what Disability welfare – stupid PIP and ESA – is … and it is pittance. It’s not even enough to be classed as pocket money. That’s your job now. To be unequivocally unable to do anything. And getting a tiny amount of finances to supposedly help you whilst you walk through the shadows of the Valley of Death alone, frightened, and without hope you’ll ever, ever leave again.
And the Government has the freaking impudence to think that not only can they put a price on that, that the price they choose is nothing compared to what you really need…
Somehow they think it’s enough… And if they think that, they’re either insane or delusional. Certainly certifiably stupid and ignorant.
Back to whence I came… Back to being trapped as a prisoner in my own body. Back to being imprisoned in my room. Back to not being able to wash properly. Back to struggling with agonising and debilitating pain that refuses to allow you to actually even move. Or even breathe.
Storm’s Calling… And Hell Is On Fire Once Again…
  

 


Physi-Oh… Lordy…No…

The isobars are on the floor again (1000mb tomorrow, and I’m feeling it…).

img_0896I’m wearing arthritic gloves just to type this. My hands are aching horribly (well, they’re crackling, buzzing and being mini-shocked, like their on that electic ball at the science museum, and “clawing”, but “aching” could be shorthand for it).

My legs are even weaker and buzzing and my back in on another planet of wrong – and my abdomen is in constant spasm.

So, in other words, it’s a normal day for crappy air-pressure day. Naturally.

However, what I had hoped for – when that damn physiotherapist finally turned up – was that I would be able to be taught how to help deal with it. To have massaging exercises, or movements, or just help to deal with these day.

You know what I did get? A frickin’ printout that I could (just about) manage 3 of from it. On a really good day. That were already incorporated into my usual practice on my (fun!) DVDs. They could have just saved her time (and damn salary) and just emailed it to me.

stupid-people-shut-upShe poked a couple of times at my leg, asked me to move whatever I could. Then promptly ignored everything I told her and gave me the most basic printout I think she could find, made for people who could move things. It was for stiff and weakened people, maybe older, maybe who have been a little bedridden. It was not suitable for what I had, which was something for perhapse lower-body paralysis or stroke or MS (which is everything that this emulates, and often all at once…). They clearly have nothing specific to Fibromyalgia or Hemiplegic Migraine. It seems they may not even have something for the others either, which is strange and confusing – and entirely unhelpful.

The worst thing is, if they had come when they were supposed to, six months ago, these may have actually been relevant… a little. But now, that ship really sailed. Off into the distance, beyond the horizon, and far, far away…

I’ve done more for myself – found actually appropriate exercise DVDs and a great YouTube yoga video – all of which are both helpful and fun, all from my chair, with some on the floor. I found better stretchy bands than they were going to give me. I have hand weights. I wanted help going further, going forward, with better things, more intensive things. But… no. Just stuff I’d already covered, if I could do it. God only knows what help people with even more debilitating conditions or paralysis get from these people, they just don’t seem to have a bloody clue.

I don’t know whether it’s severely OCD “Heath & Safety” rules that I don’t know about, or whether they’re just idiots, but they’re really not helpful. Just next time, don’t bother me and email the damn printouts instead…

About the only thing I got that was useful was that she confirmed that it was not safe for me to even attempt to walk (and oh, I am so not making that mistake again now…!) – which will be handy if the PIP thing gets awkward again (but I’m fairly sure there will be no lying this time, at least). Otherwise, I’m not sure what use they are to me…

Carry Me

 

 


28 June 2017

Completely exhausted… Got an hour, maybe and hour and a half of sleep. That’s actually better than some nights where I don’t sleep at all and stay awake for 48 hours straight, but nevertheless, I still feel horrible.

The isobars are minuscule. As of now BBC Weather app and AccuWeather, they sit at 1000mb, which is devastating. And I’m pretty sure it’s not just to me.

I can barely think or function on days like these. It strips of everything… frighteningly so. There is no functioning – physically or mentally – on these days, and there’s nothing for me but staring blankly into space whilst the telly talks to itself. Usually crime things now I have TVPlayer on the Amazon Fire Stick. The buzzing deep and electrifying “achy” type pain is horrible and at least 9.5. The exhaustion is about 1000. I cna’t really be upright – shuffle-walk or stand. Everything that involves being alive is horrible, actually unbearable. Almost as unbearable as t he advert infomercials I’m being overwhelmed by and attacked with right now…

There’s the hot-and-cold, the heavy flu symptoms, heavy cement in everything cell of by entire being – including hair, which feels like a dead cat is spilling on my head. I’m in a stupor. Crawling to the bathroom isn’t fun (particularly when also incontenant) and especially when you’ve got one [right] leg that just doesn’t have a clue.

I  wish there was something I can do about it, but everything thought up just doens’t go far enough to make isobars this low feel like nothing, It’s about putting up with it, at least for now. Unfortunately.

 

 

 

 


25 June 2017

 

The weather strikes again… It’s June, for crying out loud – surely I deserve a break at some point? The isobars are down to 1011mb today (thus far), and will be falling all the way down to 999mb by Wednesday. What on earth is going on here?

Summer was apparently a few days last week. That might probably be it – but even then, the high isobars were only a couple of days in total. I feel like I’ve been made out of electrified cement.

I didn’t sleep last night (Again). I’m so exhausted. My sleep patterns have been all over the place – so much so I’ve been passing out from exhaustion into (yes, literally) unresponsive unconsciousness for hours. In all honesty, right now, there’s probably a good chance this will happen again – despite trying to stay awake at least just long enough to watch the Queens Club Tennis finals. I missed the entire Quarter Finals because I somehow passed out and didn’t wake up until around 7pm… I’m not missing the end game!

It’s annoying having all this energy to waste that I can’t do anything with anyway, then the Isobars drop so much that you can’t even move at all hardly, making things even worse. I’m going stir crazy, all pent up, climbing the walls, being unable to move let alone expel energy, and now just staying conscious is becoming an issue. I’m actually buzzing inside, and I’m getting ready to start chewing the furniture at this rate.

Because of this, I also find it pretty much impossible now to do anything that involves relaxing and lying back or down. Not just sleep, but reading, writing, even playing games, gets to be impossible, because you just want to go outside and run about – or in my case, wheel really fast around everywhere. That’s if the Isobars agree, that is…It’s so hard to move when you feel made out of cement. I also don’t have an appetite anymore because I’m not burning much of anything off. Imprisonment is not fun.

I have no idea when the chair is coming, but quite frankly it cannot come soon enough. I’m literally being rendered unable to do much of anything because of all of this, and watching TV doesn’t count. At all. I need burn off all this excess energy before I chew through all the furniture and move onto carpets and shoes.

 


Never Rains But It Storms…

On 14th February 2017 I received a text message to state that a PIP update form I sent them two weeks before had been received. Today, on an already-terrible Summer Solstice day, I received a letter package from them – over four months later – to go and see them next month.

I’m scared about this. I’m barely managing as it is, and this is terrifying. You hear on the news of these so-called Health “Professionals” being downright terrible and respectful, even abusive, about their “clients”. About them meeting targets by writing off the sick and the vulnerable. About how they force you to go to tribunals to get what you deserve. What little that is, anyway. It’s not like PIP is a liveable amount, not when even simple things you need are so expensive (clearly no one at PIP has ever been to Ableworld or had to personally finance things the NHS either refuse or never get around to). They’ve even written off a friend, taking everything away, despite her having all the evidence and more required to prove how ill she is.

It’s a terrifying prospect having to meet them again. The last time was several years ago, when I lived in London, about a year after I  became ill. It was one of the most stressful times, and my best friend was my amazing rock and I will be forever grateful to her for all her help around it. We travelled to some place I’d never heard of quite far out of London, and had to pay (a horrific amount, about £90) for a cab both there and back. I had to go in my first god-awful wheelchair, which was so uncomfortable, and we were forced to wait for hours to be seen.

I was so ill when I went in to see the person – some guy who was an uninterested and arrogant sod, who also took no interest in the fact I was there in a wheelchair and clearly traumatised. I shouldn’t have gone in there alone, but I did… and it was only to my detriment. He basically lied about a bunch of crap, played everything down, and then the outcome was I barely scraped enough to cover basic Standard Daily Living. I saw red, got help to make an appeal, and my friend and I eventually went to a tribunal. They awarded me Standard Mobility as well, without question. It’s was so horrifically stressful to go there, but at least this time I saw three older, highly intelligent women who had reached the top of their professions. To them, it seemed it was a no-brainer.

So… I’m not looking forward to seeing some other inebriate again.

Arguably, I can at least say that it seems like they read my dossier that I sent with my update form. I rather expected they wouldn’t. It was rather the tome… But in the 4 months hence, things have become even worse, to the point – as we all know – where I’m imprisoned in my own home until I (eventually) received the special chair that was ordered. You know, the one that’s not going to try and kill me. I even had to push back their original date (3rd July) for another, where – hopefully – said chair will have finally arrived (with the new date being on 12th July). So… in three weeks’ time then, give or take. That better be long enough, because if I have to go in the other one, I’ll probably just die and it won’t matter what the hell they think then.

Once again the paperwork has to be dragged out (another tome of reading!) for them to photocopy (Lols… their time and dime, and karmic punishment, quite frankly, for not realising it’s the 21st Century and everything’s digital) and hopefully read at least some of. I’ll throw in pretty much everything for good measure – I always do, you never know what rubbish they’re going to be looking at whenever these things turn up. At least then they can’t complain. Or say you didn’t tell them, finding a nice, tidy loophole to wriggle right out of. It’s bad enough that my chronic conditions are weird and no one understands them. Hopefully, these whackadoodles will, and will see that I unfortunately cannot manage their general expectations of someone who qualifies for “Standard” anything on this.

I honestly don’t care about the money. Yes, given how ridiculous prices are compared what you don’t have to spare, money can be rather handy. However, I prefer the recognition. Where they stand there, nod, and acknowledge I go through this, that I must live and struggle in this way possibly forever. That’s what I really want.

It’s wasn’t as if today wasn’t bad enough, before all this, having not slept all night due to paraesthesia and hyperactivity due to my confinement (again… Haven’t slept properly in probably a week) and suffering “Isobar Flue”, thanks to them dropping down to 1011mb and bringing huge storms along with them to suffer with. The storms are on their way as I write. I hope they’re not bad enough to be named… I certainly do not require such turbulence now… nor am I now in any position to cope with it.

I’m so upset now, I’ve got through at least 5 gluten-dairy-free chocolate chip cookies. At least there’s no ice cream…

 

 


What Am I…?


It feels like it has been a long time since I knew what it meant to be “me”.

What am I now? Not much, it seems.

Curiosity is lost. I have no desire to read or learn – because I just can no retain any information anymore. I feel exhausted just picking up my Kindle, magazines, or iPad for anything other than fooling around with it. I shouldn’t – and quite frankly, I’m not even sure why.

I am immobile and housebound. Under a required house-arrest because the off-the-rack wheelchair makes me so ill it’s insanity itself to even attempt to sit in it anymore.

My strange neuropathic paraesthesia / (numbed?) Fibromyalgia /  Hemiplegic Migraine thing going on, that no one can actually explain, keeps me prisoner in its claws – I can’t walk, sometimes barely crawl, my fingers don’t work very often, and I can feel so terrible (paraesthesia, spasms, feeling like I’ve been filled with cement, brain-fogged, unable to eat or move) that I simply can do nothing but stare at the TV. Not really watch it, just stare at it.

I am badly overweight and struggling to even move, let alone try to be any kind of active. I do try – a lot. But the windows of opportunities are so sporadic, they don’t really count. So I don’t get to do the things I love(d)much anymore – Pilates, Yoga, dancing. I do them as much as I can when I can, and it’s literally quite the relief to be able to do at least something, no matter what it is. Another part of my past that I can touch occasionally, and feel something that brings great comfort and familiarity. There aren’t many of those left now.

I have so little control over limbs and key muscles. There’s no diaphragm, no pelvic floor, very little use of my right leg at the best of times, and on occasion my right arm too. I can barely feel my tummy except in one space in the very centre. I can’t sing, have to use Gown-up Huggies (or lady-pants, as Tena likes to call them), and I am a slave to the weather and air pressure (check your isobars if you feel really rubbish – I just stop working once it dips below 1020mb, and I fall apart and can black out in 1015mb or less).

Dignity is gone. I quite often have to crawl, or worse, be reduced to attempting to “commando crawl” because my arms and legs dont work properly. I need help to clean myself, shower, brush my hair, change, go to the bathroom on bad days. And the Grown-Up Huggies don’t help, either.

I lost the ability to drive. I can no longer cook. I have a robot I was so excited to make sitting around in parts. I have courses I wanted to learn that have sat around gathering dust, after only managing a small handful of them before falling too ill to carry on. I can no longer go horse riding. The list of books and magazines that keep going unread hurt me deeply. I feel like I live in loss and missed opportunity, and it’s quite frankly heartbreaking.

My memory has gone, particularly STM (Short-Term Memory). The long term memory went a long time ago, and has never really returned. There are people, places, things, occurrences that I have no idea about. Today I forgot how a General Election worked when you went to vote. I’ve been voting since I was 18… I hate to count how many polling stations I’ve been to in the subsequent near two decades hence. I should have known it, but I did not. People tell me things and have conversations with me, and I have no idea ten seconds later that it even occurred, let alone what was said. I’ve given up being disturbed by that – it happens too often now… it’s another unfortunate “new norm”.

The small things can really get you. I feel really put out I can’t now go to the cinema, because I can’t use my chair – I’ve spent ages looking forward to seeing the new Wonder Woman movie for months, and now I can no longer go. I feel awful I cannot cook my own food. I can’t even make my own tea, and the hot water dispenser is actually in my room (because once upon I time I actually could).

My ability to play games is sporadic, and I don’t enjoy it half as much as I should, could or would without this rediculous situation that I find myself in. The same goes with conversing with my friends, almost entirely losing my ability to actually speak to anyone – because it’s contra-indicating my ASD something rotten. I can’t fixate on anything but fear anxiety now – so there is no room for my usual crazy obsession about Mass Effect and Dragon Age. This might break my heart more than anything else.

I keep asking myself “What can I do?”… But there doesn’t seem much on an answer. I can sit… sort of. That causes problems in and of itself. I can stare at the TV… which I hate. Sometimes I can hold a conversation. On rarer occasions it might even be intelligent. I sit here thinking… and I struggle to think of anything more. That does not make me feel very good at all…

 

 

I’m waiting – constantly waiting – for it to “get better”. It doesn’t get better. It never get better.

For some reason, so far it’s only become worse. I really wish it would stop doing that.

Right now, it’s just existing in limbo, waiting to see if a new, proper, chair might allow me to have some semblance of an existence, in being that I get some respite from my incarceration here, get some perspective in going some places where I can take myself along. There’s always hope, and I really do hope to god this time I get some respite from all this by being able to “walk” myself about, to go for a “walk”, to make it to places that I can’t go now. Certainly couldn’t go in that other chair.

I’m trying to do good in waiting for it. Trying to get stronger arms and core. It’s not going too well, because despite it being June, no one told the weather, and the isobars and temperatures are through the floor – and we’re being bombarded by gales, rain, and storms. Fun. So far, for the last two weeks, the isobars haven’t risen above maybe 1010 or 1015mb. Next Tuesday (it’s very early Friday morning right now) it threatens to get to at least 1021mb. Hopefully, this time, it’s telling the truth. The last time, it most certainly was not!

If this weather doesn’t improve neither will I. I will still do as much as I can, but it won’t be the same, because the extent it makes me feel utterly terrible to the point of passing out can render it impossible to do anything. It seems so rediculous to be enslaved by something so rediculous, but there it is.

I hope I shall get some sleep sometime tonight – it’s 4:06am and I feel too wired to be able to sleep. I don’t even know why – if I did, that at least would be a start! I guess as an Aspie, that kind of thing is probably always going to elude me, but I do try my best to work it out. I could be anxious – it’s general election night. Or it could come from the fact that mornings can be harrowing after disturbing dreams/nightmares and being awoken badly in the morning – frankly the last two days have been extremely traumatising (no, I’m not kidding nor over-playing it… more like the opposite), and I do not have it in me to even begin to deal with a third day of such things.

Of course, I might not be anxious. It might be from a lack of being able to expel energy, thus never feeling tired. It’s hard to expel energy when you can’t move. It might be from the “pain” – and by that I mean feeling the intense sensations of Paraesthesia, which may as well be pain. It hurts, I suppose, but in a very different way to before, or what I’ve ever been used to before. So I just call it “pain” because it’s a shorthand that other people can easily understand, more metaphorical than literal.

I think the problem is I honestly don’t know if it’s all of them, any of them, or none of them. I wish I did, so I could do something about it. As it stands, I have no idea how to help myself, which is really annoying.

 

 


Distorted View…

I  do find it inexplicably difficult to deal with the weather, the air pressure, the atmospheric changes, especially right here were he live – where some of the worst weather in all the of the UK ends up. Its all so badly variable, it affects me so detrimentally, it takes away what little life I have.

This time, the isobars are down to 1007mb, having plummeted down from 1027mb. That’s a heck of a plumet in less than a day. Despite it actually technically be very hot yesterday, and it’s still very warm today, the isobar pressure being so low has hit me like dumpster truck doing a hundred. I’ve had everything I possibly can today, and yet I’m still really unwell because of it.

I didn’t sleep a wink all last ight because it make me so ill. Then this afternoon I just crashed out, practically unconscious for hours. This thing once agian has knocked me sideways and I’m really wary and afraid of what it can do, and how ill it can make me.

I think I’ve had some sorg of Hemiplegic migraine flareup, but it’s only severely affected my eyesight in my right eye, where the sight is completely distorted, like the lens has fallen out (it hasn’t!). In and of itself, it’s also giving me a headache, because having quite badly blurred and distorted vision in one eye makes it impossible to see anything. Usually, this comes with the paralysis, but apart from the “now-normal” weakness and numbness in my right extremities, there’s nothing extra. Not anymore – my usual stuff helped most other complications, like severe neuropathy/paraplegia and spasms, quite a lot. But the distorted vision in my right eye will not leave.

I’ve been feeling so scared, confused and, frankly, completely weary, dazed and depressed, I’ve no idea of the time, the day, and unable to do anything because I can’t really see anything properly. It’s distressing and frustrating to have things like this thrown at you day after day after day… when all you want to do is just get up and be yourself again. It’s hard don’t to feel hopeless generally, but when you have the really bad days, it feels almost confusing because you just don’t know how to deal with it.

Like today. Like yesterday. Just situations that – because the weather seems to make all the choices here – I don’t know how to deal with them.


%d bloggers like this: