This may sound too personal, but I don’t really have “normal people/NT tact”… Skip if find “inappropriate” or whatever… But lets face it, we’re all built with the same things at the end of the day (generally).
I don’t know why I hope it’s not going to get any worse. It’s as if as soon as I do, it does just that.
There’s no sleep. There’s virtually no rest. I’m so exhausted, yet doing nothing – just breathing is enough to make me feel as if I’ve just run up an entire mountain.
First I lost control of my legs. Then I needed a catheter. Now… it’s peristalsis. Yes, that’s… gross. But it’s scary – I mean, who wants to find out that now those muscles are starting to fail too? I’m struggling – spent the last few days… a week?… I don’t know… in hell where it wouldn’t work and I was in agony. Even the smallest attempt at my body to even try either causes my bladder to contract instead (who the hell knows how that happens – and it’s beyond excrutiating)… and if the mixed signals end up in the right place, even that hurts because any muscle contractions below my sternum is agony in paraesthesia, because of how my Fibro has decided to confuse itself and make me semi-numb from the sternum down.
The exhaustion I already had was killing me. This now… This has really pushed me beyond my limits. I always have to push them, find new ones. Raise (or lower, depending on your perspective) the bar of what my limits are. It seems that wherever I turn, I get punched in the gut, disappointed, not helped, fed to the wolves.
Apparently the CFS clinic the GP put me through to won’t see me because they don’t deal with you if you have a pre-existing condition causing it… despite CFS and Fibro being well-referred to as “Sister-Conditions”, and there is no “Fibromyalgia Clinic” – otherwise I’d bloody well already be there, wouldn’t I? And the most infuriating part? They didn’t eve bother to contact me – they just told the GP instead. Cowards.
I even contacted a neurological physiotherapy company (private) to see if they would at least try to help me, and they just basically said they were unable to help me – despite my basically having the same symptomology as other conditions they willingly treat. I wrote them back and put a flea in their ear, to which they replied they would be willing to put me on their waiting list… Wow, lucky me.
It really does feel that wherever I turn, I’m getting shoved back, ignored, refused. No matter what I do or where I turn… just nothing.
The GP came to see me the other day at home. Out of the blue, without the warning promised. I didn’t fare well… and I’m not sure how well it went. It’s still hard to portray how hard it is to exist in this… situation. I barely made it to her downstairs, and I paid dearly for it after in pain. She claimed she wanted to help. Well, at least someone has said it. Meant or not, who knows. Or meant, but unable to be acted upon. Nothing matters except the results, at the end of the day.
I’m existing in Survival Mode. It’s somewhere I haven’t been since I was a child, and I don’t very much like it. But it is familiar… and there is something comforting about that. It doesn’t does me much good, but it does help me get through this God-Forsaken Hell I am currently living in. It stops me going stir-crazy with distress, wondering how I fell so far so fast. How I’m so far away from everyone and everything I love(d). How lost and bleak I am, that my existence is. How I no longer live or have a life. How I’m nothing more than a
walking wheeling/crawling nothing. Nope… I’m not thinking about that. I can’t – or I won’t survive. Who would? I did this when I was a child because that was also a Hell, a crucible I was forced to run for nearly two decades.
Now… Now I just have to do it again. If a child can do it, so can I now.
It never ends…
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…
Sometimes I just don’t have any words… We go to people, to professionals, trust these people… and then just how do they end up doing not only absolutely nothing to help you, they actually victimise you instead?
So, you – the person who is ill, disabled, in pain, vulnerable – need all these professionals to help you: Doctors, nurses, specialists, clinicians, physiotherapists, Ocupational Therapists, private healthcare providers, welfare department… And then so many of them just do nothing but let you down over and over again.
There’s DWP. PIP. NHS. Social Care. Specialists. Ableworld.
They’re all terrible.
And who would have thought that the people you paid for assiststance is the one that is victimisiting you the most?
First, the Ableworld Specialist Rep came out and did a rubbish job, only found out when they sent me the bill, with only a small amount of details. The details were incorrect and I was billed for things I didn’t want or need – she had made the decision of what I wanted for a lot of things for me without even asking. If she did ask, it was only for basic aesthetic things, and I still can’t get over the fact she billed me for £450 carbon wheels by only asking if I liked black wheels. No mention of the price.
I had to drag her back a second time to fix things. She still got things wrong. I told her several times the measurements for the seats were wrong and she bullied me into accepting it. The wheels were too far back, legs too far forward. I didn’t even get to see what the measuments she was writing down were. I never saw the prescription, only received an email stating the basic things that were paid for. Nothing more.
It wasn’t suitable and it’s given me serious ongoing, possibly permenant pain. Funnily enough, the sales-centric Rep cared not for my pain and basically ignored me.
I tried calling. I tried everything sensible to get something done about it to change it. It was hurting me, making my conditions worse. It was creating extensive paraesthesia and numbness in both hands, and causing problems with my knees, where the seat was pressing right into the backs of my knees and calves because it was too long. My back wasn’t properly supported, my feet were not under my knees and forward, and the wheels were too far back to be of any use, especially with backwheeling and getting myself up curb-sides. I needed it fixed before the problems were permenant. For some reason, they really weren’t interested in helping fix the problem they had created.
So… I lodged a complaint to get something done. Instead, though, I ended up with a really stroppy email from the Managing Director refusing all further assistance, insisting instead on forcing a refund on me, and then charging me to rent back the chair for £50 per week until I could get a replacement. This was given to me on Thursday afternoon, and expected this to go ahead on Monday.
Of all the goddamn gall!! 😲😳😤
So now I’m looking at what I can do. But what can I do…?
They’re trying to tie my hands and seem to want to cause as much pain and torment as possible. I’ve become more ill from all this – and I thought dealing with PIP was bad enough… except I paid these people a heck of a lot of money to help me and they screwed me six ways from Sunday. I’m distraught. Disgusted. Horrified. Stunned. Quite frankly, I feel sickened and ill from it. And the stress levels is really making things worse, too.
I’ve been trying all evening and night to devise a plan of action. What to do about things, about the best way to handle this. I have ideas… but whether they’ll pan out is a whole different thing. I’m trying to work out what to do about all of this… and no option so far is looking too great. It’s more of a make the best of it situation (I believe that means to take what is available and see what positives may come… I think).
Tomorrow, I have to get the rest of the data I need to do what I need to do about this, and then get back to the numpty who’s done this to me with whatever I have to say to him.
We are the vulnerable. The ill. The Disabled. They’re supposed to be there to look after us. To guide us. To help us. Not screw us over and abandon us.
But that’s what they do. Because they’re all people who don’t know what it’s like.
So now I’m off to see people who actually do.