It never ends…
Tag Archives: immobility
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…
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??
What happens when you can’t really take that walk? Actually, what happens when you can’t really even take the pills?
It’s taken 18 months, but now I really am feeling like my body is becoming a little wasted – it’s weak and overly-stiff, difficult to move. Maybe it has something to do with my dreams, being overly-aware of enjoying the sensation of moving about within them. Maybe it makes me feel my lack of mobility all the more acutely. But whatever the reason, I really am feeling it now.
I am overly-aware that lack of movement weakens muscles, and weakened muscles causes lack of movement, and then the whole snowballing spiral thing starts with no end in sight. That was why physiotherapy was invented… but it’s not really useful when you’re not getting any.
I want to just get up and walk. Back straight, shoulders back, head up, strong legs, no pain, good gait, arms swinging at my side, going for a coffee, being relaxed and pain-free. Like when I’m dreaming.
I continuously forget that I can’t move. I end up hurting myself because I keep doing things without thinking. I want to stretch and walk. Perhaps bounce, maybe occasionally a little skip. I want to just clip the lead to the dog and wanter off down the road. I want to go on the bus, walk up the stairs and sit at the front of the top deck and look at the world from up there… I’m barely scraping 5ft tall when I breathe in and puff my hair, but in the wheelchair I’m pretty much half of that, so I like being tall on top of a bus.
I really miss walking. It’s something you just take for granted. Even now, it’s still easy to forget, and I try to do things that I can’t, then I fall over, or hurt myself.
I would definitely rather walk than take a pill.
Maybe one day that choice will be given back to me.
If I sleep, I dream. When I dream, I can walk. When I wake up, I can’t.
Then the real nightmare begins over again.
My dreams are usually horrible. Bad things happen in them. I always wake up scared – or unnerved, at best. But in them I can walk. It’s freeing. So normal. It doesn’t occur to my brain there is any other way of being. Even residual memories from the darkest dreams or nightmares feel not so bad when I remember how good it felt to walk unimpeded again. It’s a feeling I’ve not had in reality for 18 months.
It’s hard enough to go to sleep. This now gives me even less incentive to even try. In my dreams I walk, run, move without pain. I am free. Even in the nightmares, I am perfectly physically healthy and mobile. And I like it.
I don’t usually remember my dreams… nightmares? – my mind never wants to. Can you blame it when it usually just goes through horrors every night? But I remember the residual feelings… it lingers somewhere in the subconscious. Usually it’s fear that lingers; I almost always have terrifying nightmares – at best they’re horrifyingly creepy. But in them I move freely – run from things, walk without problems, search, investigate, wander… everything I can’t do when I’m awake. Suddenly, nightmares aren’t the problem I wake up distraught… This is. In fact, I would rather go back to the nightmares than wake up.
After these dreams, I wake in the morning thinking everything is OK. Then I can’t move. The aches and pain hits. I can’t turn easily in bed. Often it hurts to breathe. My legs won’t move properly. Reality returns. Then I just wish I could go back to sleep again.
Being able to move freely is just something you take for granted. Even within my dreams, I take it for granted. When it’s taken away, your mind and body miss it. I miss being able to easily walk around the house. I miss being able to go to the bathroom without struggling. I miss walking the dog. I miss just popping out for some coffee or wandering around the shops. I miss going out being easy.
I once rode horses, did yoga, danced, performed, sang, walked for miles. Now I struggle unsteadily to stand on and move my legs, and have to be taken out in a wheelchair. I’ve put on weight that I can’t get rid of because I can’t move properly. I can’t eat properly when I’m on my own because I can’t make anything, so I don’t eat as well as I used to. I need help to get up, walk, make food, go out, push my chair, take me to see doctors, go shopping. I’ve been reduced to… nothing.
But out of all that, what I miss most having the choice. Even if I’m being scared to death in my sleep, in my dreams, at least I can walk there, or run away. I can do what I want to do. And I don’t have to rely on anyone else to do it.
Apparently, that’s too much to ask, though.