It never ends…
Tag Archives: paresthesia
The isobars are on the floor again (1000mb tomorrow, and I’m feeling it…).
I’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.
She 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…
The weather is getting to me again… My hands are tingling with pins and needles, mixed with tiny but very powerful and painful electric shocks. My fingertips are especially painful, as is a small space at the bottom of my right thumb joint.
Of course, that’s not all it is, but right now it’s marginally the most painful and uncomfortable to endure. Otherwise there’s various neuropathic issues, from ice-cold feet to deep electic-lightening and achy-like deep buzzing around various places like my neck and hips and shoulders. Even my eyelashes and hair feel like they’ve been plugged in to an unrestricted electrical current.
The thing is that I’m trying to watch the damn tennis, and it’s making it really difficult! I have my 42-inch screen split between 2 matches via my PC – one with Murray, the other with Nadal. And I’m playing with my iPad (or I was, before trying to write this, anyway…). Trying to do all that whilst, well… everything… hurts, is hard. So I’m annoyed…! It’s Wimbledon, for crying out loud!
This is supposed to be the summer… I’m wondering if someone forgot to email the weather here in North Wales… The temperature has gone down, the isobars are back on the floor again (about 1011mb straight down from being in the 1020s), and once again I get to be controlled by the weather – but I’m trying really hard not to be!
To make matters worse, this morning I had to get a mountain of paperwork together for a new PIP (re)assessment – I told them I was worse, so five months later they finally want to check that’s actually true… I have two plastic wallets filled to the brim (if they had brims, which they don’t) with letters, paperwork, and a personal statment that’s 14 pages long detailing everything – so they can’t say I didn’t tell them. And I’m still wondering if I’ve got everything I need, and whether they want all the old stuff as well.
I think I’ve just put literally everything and then some in there, so hopefully everything they want is in there. But at least that’s out of my hair now. It’s on Wednesday (it’s Monday today), at 3:40pm – and I checked, the isobars are up so I’m not going to be completely dead by the time I get there.
There’s a fair chance I’ll manage at least some full sentences whilst I’m speaking with the annoying fruitloop that will be undoubtedly in charge of my fate with these people. But that will be after quite a long journey to get there… because they just love to send you places you haven’t got a hope in hell of getting to, just so they can get you out of their hair on a rubbish technicality…
Oh, and to follow this joyous occasion that will probably leave me wanting to chew my own head off, I then have to see the physio on Thursday, the next day.
Then on Saturday I long jaunt to see my lovely sister in Southport… I’ll enjoy it whilst I’m there but I’ll probably not appreciate the long journey! I hope that will at least end my week on a nicer note!
Oh the fun that awaits me this week…!
Second day of stumbling around, attempting to survive on my own under these… unpleasant circumstances. You would think it would be better. Easier.
Yeh… It’s really not.
It’s been worse. Now I’m sitting here, in my chair in the lounge, watching Andy Murray, alone and cold, unable to reach the damned radiator and turn it on (there’s a table I can’t move in the way), wrapped up in my mother’s fluffy dressing gown, I’m regretting being alive…
I’m certainly regretting being ill.
It’s been a nightmare day, and it’s not even over yet… Althouth it feels like it’s been about a week already. I’m in turmoil and frankly traumatised as to how much of the downhill slope I’ve actually gone. This morning, as always, I woke up confused, disorientated, with the only conscious thought emerging of that I was supposed to eat my meds… which were not where they were supposed to be. I was distressed and in pain, barely able to move and yet still attempting to find the medication.
Then the dog starts going bananas because the postman is at the door and the bastard just won’t leave the package and go so the dog with shut up.
Both of my legs were dead (I could manage some twitches with my left, though… score!) and I couldn’t barely even feel them. I couldn’t get up and the dog wouldn’t listen to me. I was distraught and confused, becoming more and more panicked as I tried to make the noise stop so I might at least find my meds.
My father finally made the dog stop. I finally found my meds. I struggled to take my tea and coffee left for me. My back was burning so much I could barely breathe through it, my hands were numb, and I just about managed to get myself up onto my elbow for the few seconds it took to drink each one. Such a fun start to the day…
I lay there, so upset at the fact it was so difficult to do such simple things as get up and drink tea/coffee, anguished at the confusion and disturbed perception of where I was and even who I was… I was also in a rediculous amount of pain in my back. For company, for something for my mind, I somehow managed to get the TV on, playing live shows over TVPlayer on Amazon Fire TV Stick. It helped. After about an hour or so, I realised I had to go to the bathroom – so at that point I was forced to do something about that.
Unable to really move my legs, I dragged myself up to sitting. I pushed my stuffed baby penguin and favourite little pillow into my canvas tote, added my phone and iPad, then proceeded to put it back around my neck and carry it, dragging myself along to the stairlift, and finally into my chair. I had to take a half-glass of wine to dull some of the pain/paraesthesia in my back, and I had another downstairs – I coulnd’t put oils on; I tried (numb hands and small bottles I can barely hold anyway do not mix, especially when sliding with oils).
At least I made it to the bathroom after that, anyway. That’s definitely something very important!
I managed to place myself in the living room. Watched On Demand TV and helped dog with his paralysing fear of overhead RAF planes going around, until 12pm when the tennis started and the dog was happy again.
So here I sit. Many, many, many hours later. Hands are funny – buzzing, numb-ish, tense, a little spasmy and cramping, with some electric shock-like pain. My back, upper legs and torso are all kinds of not OK, from the beginning of real spasms, to buzzing, to cramping, prickles, and burning. My lower legs and feet don’t really feel like they exist and are freezing to the touch (despite being wrapped in a fluffy dressing gown). I am unable to get dressed on my own, and I realise I left my big cardigan upstairs (not realising I would need it). So I remain cold. Borderline frozen. Just hoping I don’t actually die of hypothermia on contract frostbite whilst I’m down here…
I managed to not throw my food on the floor again, at least. It’s a start… But this day is just so hard… It makes me feel terrible that I just really can’t manage for myself. I’m glad I don’t have to do this tomorrow (my mam is off work), I would not be able to cope. I’m not coping now. My head aches, my muscles and bones ache. The isobars are all the way up, pretty much, so clearly having help makes a huge deal as well.. Even putting things out for me doesn’t really work – it’s not exactly being “independent”, is it?
The fatigue is overwhelming. Not having the correct “care” is hurting me and having a direct impact on my welfare: You know, you just don’t realise what a big impact that makes on you until it’s no longer there anymore! The “new” version of Fibro Flareup is hitting me again… and funnily enough, I don’t really appreciate that, either… Seriously, is this day really not over yet??
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.
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.
More long days of Fibro Flareups again. They really are tiring, and they really get to you. They get me down, but even more so do they really get to me. They hurt and they’re difficult to get through, you can’t do anything, and of course that all mixes in with the stresses of the permenany Hemiplegic Migraine.
In and out of something that borders between unconsciousness and sleep, I’ve been able to accomplish nothing I hoped to today. They’re only basic wishes – brush hair, shower, play game or read, perhaps go out or watch a TV show (Versailles is the current favourite). However, I instead literally get to do nothing because I’m passing in and out of consciousness, and it’s really not nice at all.
This is, quite frankly, dehumanising, disheartening, frustrating, and upsetting. When you just want to do one or two basic things and you can’t you start feeling really, really, pathetic. And inadequate as a basic human being. My hair is a mess, a shower would help on numerous level – not just the obvious one – and playing my games actually puts my brain to work when nothing else can. It’s pretty terrible when you can’t just do at least one of them.
The reason for this flareup is the weather. I have discovered personally that if the isobar pressure drops into a low of under 1020mb (which is quite high), then I suffer. 1010mb and under and I may as well be dead. I certainly wish I was, to be honest.
On this day, it sat at 1011mb, but was also thrown at me alongside heavy rain, cold temperatures, high humidity, and high precipitation. All together it teams up into the proverbial perfect storm. And I am trapped right in the middle of it.
It’s been hit with everything I have – Pregabalin, Pukka Ayurvedic teas, Key essential oils, even Courvoisier. All given throughout the day – the parts I’ve been awake, anyway. It’s kept a lid on the worse of the “pain” (which in my case now means extreme paraesthesia, and not “normal” pain, which I had before) – however, not enough to stop me from crashing out the entire day. Until now, of course, at 1:00am. No… Now I get to be wide awake. Yey…
The bad days do not make the bad days better. The good days only serve to make the bad days more frustrating and upsetting. When you see others getting on with the basics, you feel like something between a complete failiure as a person, and so utterly usless you may as well not exist. When it’s hit-or-miss as to whether you can do them too, then it’s just hugely magnified. I find that very difficult to deal with, and feeling non-funcional is one of the worst thing that I can go through and experience.
I’m hoping it’s going to get better – supposedly tomorrow should go up to 1020mb with no rain, so that might offer a little respite. Next week is supposed to be quite warm with high pressure too (although with a Bank Holiday looming, I doubt it will do nothing but give way to the patently required Bank Holiday showers and soggy weather…).
But… it’s days like today that really makes it hit home just how bad things really are, and this is a seriously debilitating condition that I have no control over. This is the psychology I can’t get my head around – accepting that this is the case, that I have no control over it. Yes, there are some things that can be done, and I am doing them… what I know about, anyway. It’s not like I’m getting any guidance here…
I hope one day I’ll be able to… coexist… in peace with it, and I hope that day comes soon, because the upset I get from days like today took their toll a long time ago, so every one since has been adding to a high burden I already carry around – what I call my “ball of wrong” in my tummy. It sounds silly and vague, I know, but it’s the only way I can identify things or emotions in me that this is causing, and there’s a lot of them. It’s like a giant “Miscellanious” cupboard stuffed to the brim with unidentified thoughts, feelings, pain, confusion, and scared, whigh has been accumulating since this has started, and it lives in my tummy. That’s just ASD for you, it seems.
Being as Aspie Girl with all these things going on everywhere certainly isn’t easy…