Tag Archives: disabled
I have the headache from hell. It’s been here since Storm Irma hit landfall in Florida a few weeks ago. It’s not going away now though.
I went to London for 3 days – home again after two whole years. Four years since I’d been to where I used to live and the West End, because once I moved to Leyton and was ill, I never could go back. I only went to Stratford (and frankly that was pretty good enough, too – great area!). This was the first time I had been and the first time I’d used a proper wheelchair there… But the biggest shock wasn’t being back in London (that was just normal, like visiting the hometown you grew up in and love). No… The biggest shock was coming back.
When I was there, staying in Angel [Islington], it was far from perfect. But things were easier. I wasn’t as ill. Wasn’t in as much pain. I was stressed to hell and kingdoms come, but I wasn’t as ill. I was able to get up 1-2 hours earlier than [here] in north Wales, and with far more ease. But since I’ve returned to north Wales, the difference (whatever the difference is) has hit me with a sledghammer and then some. It’s, quite frankly, utterly shocking and horrible.
It’s bad enough this Aspie Girl had to leave her home (London) in the first place. Now, after going back like nothing had happened (except with more pain and a new wheelchair), the difference in… whatever… is striking. And maybe because I’m not used to it now, I can’t cope with it. With whatever it is here [Wales] that does make my condition that little bit worse. I don’t know if it’s a psychological thing affecting the Firbo, or a Fibro thing affecting the Psychologial. But whatever it is, it’s there and it’s real. And shocking. So to be so brutally tasked with trying to “Cope” with it, is boslutely horrible and really hard.
No, I did not expect this at all. If anything I thought I’d get a few days of respite, but not to this extent. Wishing now I’d stayed a damned week instead…
It was lucky I went with my new chair – GTM Mustang, from Cyclone. [Mine’s black and silver and so comofortable]. It made all the difference there. I managed to go around everywhere I wanted with absolute minimum assistance, which was amazing. Thus I question, how is it now, from the time I’ve come back, am I passing out with pain again? Did being back home make me stronger? Is there a radical difference being up north? Is the weather? Is it about living so high up [compared to London]? What is it about being here that makes it go from 9¾ was a maximum pain there, to being a minimum one here?
Even when I was very stressed there (just try taking the train from Euston station when you’re in a wheelchair!), it still didn’t get too bad… well, until I’d been on that damn train about two hours, and it was already 7pm! And yet, all I’ve done since is, well, nothing, because I can barely move.
Is it psychologically-induced? There’s no denying the immense depression and fear I have living here, and not back in London. I’ve never liked it here, and I am horribly resentful and fearful of life here. I feel restricted because I’m forced to be more reliant on others here – you have to drive or be driven here, there’s no public transport available (certainly not adaquate enough for indipendent wheelchair use, like London has). There’s a lot of depression and fear involved to being here. I am just a completely different person there – I’m home, safe, and I know and like how the world works there. Here… Nothing of the kind, and I’m terrified and agoraphobic when here. That can’t help.
It’s always cold and raining, so wet, damp, painful… meaning that it has an immense knock-on effect on my physical well-being, and thusly has a knock-on effect on my psychology. Clearly, the answer is that it’s everything together doing this. It’s a messy, tangled ball of knotted string…
The fact there’s no help or support in any real way, means I’m left floundering. I’ve had to ask to be re-referred to neurology because this is getting worse. Physiotherapy has dumped me (there’s no NHS money for long-term help, and she was a wet blanket and a half anyway…). I’ve been waiting about a year for psychological help, and I’m still waiting, desperately trying to tread water in the meantime. The pain clinic waiting list is a joke – they took 4 months to get back to me, only to tell me that from then (July) they notified me it was going to be yet another 9 months of waiting list to go. And nothing else has been offered, or is available, because I live where I live.
I had a nightmare of coming off the road on a corner of a steep mountain road and falling down hundreds of feet into a deep canyon. I turned around in my car seat, squeezed my eyes shut, and said goodbye as we fell and fell and fell. Just in the moment before hitting the bottom, I came round. Before then though, I didn’t realise I was dreaming… I really thought I was going to die. From disbelief in the first instance, I turned and accepted my fate. It was so horribly surreal to face death like that… and perhaps miraculous to find out it was just a dream.
It’s how I feel in life – it was a very Jungyan dream. I feel like I’ve gone off the edge of a cliff, and I’m just falling and falling… but there doesn’t seem to be any way to be woken up from this nightmare that I’m living in. And I just keep feeling like I’m falling the whole time, because there doesn’t seem to be any kind of end or stability in sight at all. I’m closing in on the 4th anniversary of the start of this [next month]… and I’m just not even close to getting this sorted out. I don’t even have psychological support. I’m just on a useless waiting list, and it’s not like those call centres where the phone queue tells you where your place is… They just make you wait in Limbo until you finally get that letter to say it’s “your turn”.
I don’t like being back. I wish I didn’t have to live somewhere that’s not interested in being good to me, and in fact, only makes things worse. There’s no long-term support of any kind, and I have no emotional support from the professionals. I’m a lost Aspie, falling and floundering… And I still can’t understand why they can’t help me to level out and fly…
Does the grief ever really go away? The one you feel from all that you’ve lost?
The shame, the humiliation, the degradation, the demeaning secret truth of the life you have to… exist with… it just never seems to become “OK”.
To lose so many of the general functions you were used to your body doing for you, that you took for granted… does that ever really become something that’s really “OK”? You lose so much… I’ve lost so much… It’s not OK. Not even close.
It’s hard to know that the people around you just do not understand what you have to deal with… whilst at the same time so relived about that too. But then… they do and say things without understanding the impact on you, or the extent you have to push yourself to meet their expectations, or their level. What I mean is that they just think “popping out” is just something you can just do. Just like that. Or walking just anywhere they want is just fine, etc. When you live with a chronic illness, when you’re living in a wheelchair, when you sometimes can barely breathe because it hurts so much or your just too exhausted to manage it, it’s not that simple. Not even close. Getting out of bed is nothing to them, but to you, that’s every spoon you have and then some. Then they expect you to do even more.
I run on zero spoons. I do as much as I can on it, from going out for the day, to trying to do something normal like reading or reading, to attempting to make some food (which also requires at least one other person, too), but when they’re then a little tired from it they want “a little lie down”… as if they’ve done so much more than you have, expecting you then to do things for them… that really grates on me, and they do it because, quite frankly, you’re so damn used to it and they’re not. You live with the mind-killing exhaustion of chronic fatigue, so you therefore must be more used to it and are OK… Right? I’m not sure what this logic is, but it’s rather mean – and frankly, either ignorant or naive.
It’s not nice when just getting out of bed was utterly exhausting, then spending your day in your wheels, and your (frankly) grown-up Huggies, having no say over when you go or how, and just about able to stop yourself crying from pain or exhaustion or paraesthesia symptoms, or all the above.
It’s horrid when everybody leaves you behind for their “normal” lives, and look on with distain when you turn up in their lives… You’re supposed to deal with it, but Heaven forbid they do for a day or a few hours. What’s worse, is they make their jusgments without knowing the true extent or details… and they really don’t want to, either. What’s worse than the reality of seeing you is acknowledging the true reality of what you have to deal with. And they don’t want to know that… you know, in case it upsets them. Poor, poor them.
It’s hard so see everyone else in your life get on with being “OK” and you struggle to simply go to the bathroom. As your very basic functions, ones that you don’t even remember living without before, fail terribly and leave you stranded back in those days once again… How can you even look them in the eye with your head held high? Siting in grown-up Huggies pull-ups, or giant-tabbed Pampers, knowing they might not even do the job properly, how in hell are you supposed to have any self-esteem left?
I can barely feel anything from the chest, the lower rib cage, down (including not being able to feel the diaphragm), and thus I’ve been left with less and less control over things – first the legs, then a little bit of the pelvic floor, to having no concept of most of my abdomen, or lower abdomen, and my pelvic floor is barely even a memory anymore. Today, a really bad thing happened in this area and it was extraordinarily humiliating, and overwhelmingly shocking – to be faced with the reality of how far my body has slipped from my own grasp has left me reeling and unable to comprehend where I am (figuratively) in my own self, my life, my entire existence.
I’m hurting inside, but again, there’s no one there who really understands what’s going on… and once again I am alone. How do you even explain? It’s horrifying to you, so what does it evoke in other people? If you’re ashamed, what will they think? You can only imagine they would be horrified. Like you are.
I do not know how to deal with feelings. I don’t like feelings. They’re messy, unquantifiable, horrible, uncomfortable, and usually I can’t even cry (which I don’t like anyway because it makes your face soggy). Right now, I have a lot, and I don’t know what to do with them, how to process them, how to manage to get the hell rid of them, to be honest. I think there’s guilt, maybe shame… There’s definitely sad. Loss. Grief. Reeling and shock. But they all get so very overwhelming, and then I get very confused and upset.
In the last few days, maybe a week or so now (I lose track of the days), my hands have started playing up, and started not working properly. The paraesthesia in them is astounding and so painful. I can’t move them they’re so numb (imagine someone tied your wrists so tight it cut off the blood flow and you have them tied up like that all day). They can spasm so badly they curl up on themselves so tightly, they leave deep nail marks in your palms. They can never open out properly, they’re in a permentant “claw”. It prevents me from being able to do even the simplest thing, and also can prevent me from playing games, or even following a conversation because the sensation (or pain) is so bad there is no more room in my brain for anything else. It makes writing [typing] so hard sometimes that if I manage at all, every word has a spelling mistake at best and is gibberish at worst. It’s emotionally painful to endure, to be honest.
I feel like I’ve been left to rot by the system. Everyone has been less than useless. I’ve just been left to my own devices, and I’m floundering in trying to help myself. The diagnosticians throw me to general services (pain clinic, psych, physio, etc) and discharge me to make their targets look good. Those other services have nothing to offer except inefficiency and long waiting lists you stay on just to see how inefficinent they are. It’s certainly not to be helped by them.
I’m lost, broken and alone, still trying to find something of myself in all this, wondering if I can ever rise to get the better of it, so I am what is driving me, not this.
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…
It went pretty well, to be honest… which has shocked me no end. I felt confident going in, the day was lovely, isobars were right up at 1025mb, temperature around 23ºC, I got there early… Everything executed astoundingly well. We got a little lost, because it’s in a weird place by the Menai Bridge, to get to Anglesey, but Google Maps sorted that one out.. 😉
We actually went in right away after we got there. We were early, and it looked like the assesseor was ready to go hom early. So we were able to go on in about 20 minutes sooner, which was great.
The woman I saw was really nice; a real nurse. She was sympathetic to my situation and could see what was going on – and seemed shocked that I didn’t have everything set up already, given this has been going on so long. She was also shocked when I pointed out it had taken six months for PIP to get around to seeing me after seeing my application. All in all, she seemed on “my side”, which was of course a huge difference to the previous idiot I saw, when I first got PIP.
She talked to me, listened to me, took my 14 page “dossier” of every detail I could think of that I’ve recorded and updated as things have become worse. What I didn’t remember, couldn’t say, or couldn’t portray properly, was all in there, so they had all the information they required right there, so they didn’t have to remember everything. Hopefully, it came in useful.
I was amazed it seemed so easy. That she made is so easy – she was lovely, affable, friendly, talkative, and your typical nice nurse, really. I was very lucky to get her, really. She made it easy to talk to her, was familiar with the neurologist who diagnosed me, and seemed very well-versed on my Asperger’s. I’m not used to that!
I hope I will at least receive a fair assessment this time. She seemed to understand the situation, at least. All I want is for their official paperwork to reflect what I have to go through, and not undermine it. She said she would get the report sent out by the end of the day today. There’s a chance I could get a PIP rate that reflects my circumstances, rather than one that undermines it. If they’re as fast as she is, then I will hopefully get the upgraded PIP level sooner, too.
… Yeh, OK, probably not, but you never know…!