Category Archives: Hemiplegic Migraine

Falling…

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…

 

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Continuing Saga of Un-AbleWorld…

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. 

 


Please Make The Stupid People Go Away… (The PIP Fiasco Continues…)

It’s come to the point of I’m getting scared of what’s going to happen to me next. How much the people out there who are supposed to help you are not only just going to ignore you, but they’re going to kick you in the nuts when you’re down, too. With Jibgle Bells on their toes.

Two bad things happened today, and I’m wondering how much more shambles there’s going to be in out beloved Health & Social “Care” system before most of this place falls apart because no one can get the help they need to be even vaguely productive. Or even alive.

The DWP are even worse than a joke… It’s almost like they’re in the business of causing as much suffering as possible. Constantly, consistently, and completely.

I have tried and I can’t find anyone else quite like me… and it seems that because I’m quite unique everyone wants to put me down. Even downright lie.

Today I got the PIP assessment outcome. Turns out that they give with one hand and take with the other.

Firstly, I finally got the “Higher Mobility” component – lets get the one single good thing out of the way.

20160701_221010000_iOSSecondly, it turns out they lied outright on some of the “Daily Living” parts, leaving me with the same “Standard Daily Living” Component. I know this because I called the guy who looked at the case and made his decision. He explained what “evidence” he had been given by the person I saw… and it turns out they omitted some things and downright lied on others. They hadn’t listened. Clearly rushed the report. Missed giving them vital evidence and letters. Misheard or misreported what I had told her (how the hell am I supposed to be able to be able to still code and do my own sites etc “competently” or game when I’m like this???!). She even missed giving them verbal communication and somehow “saw” I had “good” dexterity – whatever hands she actually saw, I totally want them instead! 😤😡

In hindsight, she was all “Oh I’ll do this right now for you so it’s all done and with them”… and ergo clearly rushed it and did not do a good enough job at all. Or she was just mean. Either way, I got screwed.

When I called, at least the guy on the other end was willing to put me into the first stage of Appeal (some sort of re-review). He stated he would send me a copy of the main report, and I was to note my responses to them and why they were wrong. I was also to send a copy of the letter from the neurologist regarding the Hemiplegic Migraine diagnosis.

You know why…??

Because that inebriate I saw negated to send the diagnosis letter I gave her or mention it whatsoever. At all. It wasn’t even in the notes. We talked extensively about it.

So I’m hopping harder than a bag of frogs, and as pretty furious as my emotions will allow me to be without going into meltdown.

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Now… You’d think the horrible would stop there. But, oh no. This is my life we’re talking about. Sod and his Law wasn’t done with me yet…

Next, the letter that came with the PIP letter today was from a stock and repair centre for basic mobility. I was wondering why they had sent me what could possibly me the least specific, least helpful letter ever.

I understand from our Approvved Repairer that they have not been successful in contacting you to arrange an appointment to either deliver/collect/repair equipment etc., [sic]

I hall be most greatful if you will contact [them] to agree a mutually convenient deliver date and time.

I had no idea what it was about… Who the hell would? So of course I rang them. And the frogs swallowed a Tigger and they started hopping to the roof.

I had never been contacted by these people before, so what the hell were they talking about? Well, it turns out it was for a wheelchair. Some off-the-peg piece of crap they had probably dug out of the back room. You may be unsurprised to hear that was not the agreement nor what I requested whatsoever.

I had asked the physio (a wet blanket if I ever saw one…) to be referred to ALAC (Artificial Limb & Appliance Service) of Wales (based in Wrexham around here) to be assessed for a proper wheelchair for my long term needs. What do they do instead? They don’t even contact me, sending some nightmare chair to their distribution and delivery centre without even talking to me first… I cannot explain just how bad and unprofessional that is.

Let’s just say if that was a professional private company, they’d have their ass handed to them via the serious complaints system of the corporation. My mother is still a professional nurse in a care home, works with them all the time, and even when I told her, her reaction was… “What?? Why?!” It was three ways from Sunday deplorable. And of course I told the service centre guys to send it the hell back.

My reaction was absolute astounded horror. Actually, that doesn’t even cover it, but it’s the closest the English Language has, I think. I couldn’t even think or move (well, as much as I might be able to anyway). It was a good thing my father was home. He helped calm me, then I spoke to my mam at work so she could give me some decent jargon to throw back at them. But when I was all ready to go, no one even answered the phone. All I got was voicemail. Frickin voicemail. On a Friday early afternoon. Talk about a message of “bugger off and don’t spoil my weekend”…

Thus I sent them a rather lecturing and detailed email. With big words. Well, they asked for it, the buggers.

I’m already struggling with my own current wheelchair (do not ever go to Ableworld Specialist Department – they’re rediculous and pathetic, and I wish I had never, ever chosen them to get my chair though… They do not know what they’re doing 😤 They ruined my chair measurements and centre of gravity, got fittings wrong, and did not give me what I asked of them… And now they’re arguing with me about it!!  😲 ). I did not need all this as well. In this country [Wales] they are not taking disabilities, ASD, or chronic illness seriously at all (except for a few professional individuals). I’m 36 and struggling. I should not be struggling, illness and ASD or not. It’s not right or fair or even logical to stop people reaching their potential because you just get in their way.

… My answer is what I have come to call The Queen of Darkness. With age I realised that this part of my Aspie (as I know it to be now) took over and just barrel-rolled over everything and everyone in her way. Darkness is her home. Bad things are her air. She fixes the wrong and doesn’t take crap from people. She [I] made it clear that “no” was not an option. That walking over her was not an option. That being an idiot wasn’t an option. It’s something that came out of me through necessity to survive my later teen years and 20s. Then… “She” disappeared.

Perhaps because that part of me was no longer needed. However, now it seems that she needs to return. So I guess someone’s going to have to put her Big Girl Panties on and get serious with people and life again. Otherwise I’m never going to get anywhere.

If there’s people out there who can lie and rig the system to the point they can defraud the DWP for years, there is most certainly a way to package the truth to also get what I require to help me live my life. To save my life. To get the same thing, but for real reasons. It’s certainly not right that I struggle so much, and these struggles get pushed under the carpet by the PIP people without another care in the world, as if they – if I – do not matter.

Nope. Not OK. At all.

She’s coming now to kick their asses. Hard.

 


Waiting For The Axe To Fall…

So… today is the last day before my PIP re-assessment. Needless to say I’m terrified and freaked out.

They’re not nice people, and their job is to try and find ways of undermining your suffering to make sure they don’t have to give you money to live on.

Thus, I am not looking forward to it. Funny that.

Today has already been a nightmare without even factoring in that hovering over my head like a black cloud on Eyore. The isobars have been on the floor again (1007mb) and I could barely move my fingers, let alone myself. It was a big struggle, and although I am glad I got some things done, I am not pleased that I did it. It was really difficult, painful and completely draining.

img_0886It wasn’t even anything big… Well, it was to me, given the weather (torrential rain and chilly), but in and of itself it wasn’t big. I was barely able to get out of bed, or downstairs to my chair, or function. So doing this did feel like a huge mountain to climb.

I was in constant panic attacks and major anxiety (and I still am – my mother, a nurse, came up with a clever way of helping me by emulating the paper-bag trick but using my inhaler – taking it without actually using the pump… it works!). Eventually, I managed to get myself together enough to go out to the new Waitrose in Chester, so I could get some good food to get more nutrition and look after myself better. The place was great and I got some lovely things, including fruit to go in my new Purition protein smoothies. Now I’ll at least have an entire week of nothing but good, wholesome and nutritious food, with my new mountain of fruit and veggies from there.

Unfortunately, it was also extraordinarily exhausting to do this, and by the time I got home I couldn’t even function: I could barely transfer from the car to the chair, I fell when I went to the bathroom, and I had multiple panic attacks. I have no doubt I will not be going to sleep at a reasonable (as in before 6am…) hour – although I can’t imagine what I am going to be doing with myself now. I’d like to think it would be playing games, but I can’t see it somehow…

On the up side, I finally got the Mass Effect Andromeda Loot Crate that I pre-ordered back in March… And it was well worth the wait!

  •  A Gorgeous Pathfinder hoodie
  • 2 lovely plastic children’s(esque) cereal bowls emblazed with the Mass Effect Andromeda Cereal logo around it (especially for geeks!)
  • 2 gorgeaous, heavy (real) whiskey glasses embossed with the logo of the Nexus’ club, Vortex
  • An adorable model of the Nomad
  • An Andromeda Initiative Medalian Coin (huge and heavy!)
  • A Pathfinder Patch
  • Pins of Tempest and Andromeda Initiative
  • A [short] Dark Horse graphic novel: Mass Effect Discovery #1
  • A Normandy Datapad-shaped card with all the details of the Crate on it

I was amazed by it – it was really so nerdy! Worth the wait and the price. I’ve no doubt I will be hiding that hoodie as soon as winter comes! 😋🤓😎

And now… Well, I just wait. Wait to go and face the guillotine that is Capita, PIP [Mis-] Representatives.

Oh, Lordy, I so do not want to go!

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Finally Freedom

The chair came – and such a good thing it did too.

Today I really, really needed it – and found out how much freedom and indipencdance it really does bring,

Firstly, on 30th June 2017, Lou[ise] from Ableworld came around 12:30pm and made sure it fitted, showed how it all worked, all the little neuonces to it. Then it was all mine.

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I went to Penrhyn Castle first (it is not suitable for wheelchair access at all!). It was only because of this thing I was able to enjoy it – or get into it! – at all. Yesterday (the next day), I spent the afternoon/evening out in the local town with a friend I hadn’t spent any proper time with for years, not since I became ill. I pushed myself the entire time, and it’s a very difficult place to generally manage.

I’ve never been able to indipendantly manouvre around this place single-handedly before. I was quite amazed I had managed. First we went to Starbucks, and walked all the way to the other end of the long high street on a rather steep hill, all the way up to my favourite pizza restaurant. We had pizza and cocktails at Johnny Dough’s and really enjoyed ourselves. It was a lovely day out, much like the ones we used to enjoy back in London, and I was so relieved to have a “normal” day out for once.

However, that elation came to a crashing halt today. After passing out from a Fibro flareup in the night, about 11:30pm, I awoke around 3:30am and barely [physically] made it into bed. I ended up unable to sleep after that, eventually going out again about maybe 5am. No more than two hours later, my mother woke me up to tell me my father (my main day carer) was violently ill during that night, throwing up. She had prepared my teas and my meds, leaving them there for me next to some coffee (which I drink mainly cold in the morning) for when I did wake up. I wasn’t happy, but I allowed myself to go out again.

At 9:25am my usual meds alarm went off and I managed to take them with a bottle of water also left for me. I immediately went out again, only coming round properly at around 1:30pm. I was woozy, disorientated, confused, afraid, and my eyes were glued up by about three layers of mascara still on my face from the day before (having never taking it off due to passing out). I had no one else to turn to – I rang my sister to help me orientate myself and help me from feeling scared and confused. Bless her, she spent about half an hour with me over the phone, chatting, discussing, telling me about the renovations on her new house, and what she was up to.

By the time she had to go, I had managed to consume most of my teas and felt clearer-headed. I then had to work out what on earth I was going to be able to do with myself. I couldn’t feel my legs – there had been no one to help me with massaging (I don’t have the strength to do it myself, more’s the pity), nor used my essential oil massage oils on me (I couldn’t find the morning one, and could barely move to do so). It was then I remembered the chair downstairs. It was to be my saviour.

I managed to drag myself to get my canvas tote that I keep my things in, and put my phone and iPad in. I subsequently had no choice but to then place it around my neck and drag myself to the stairlift. I managed to get up into it and took myself downstairs. The wheelchair was left folded in front of where the stairlift comes to an end, so the transfer was easy. And once in… I was free to do whatever I wanted to do. Which was mainly to go to the bathroom, frankly.

Without this chair, I would have been screwed today – even something as simple as going to the bathroom would have been a nightmare. Food would not have been an option, that’s for sure.

I took myself to the lounge after and entertained myself in there, mainly talking to my friend over Facebook Messanger app, and nosing about online, whilst watching on demand TV. I struggled to make myself food later, around 3:30 or 4pm, and dropped some of it on the floor. I could barely manage to eat the rest I was so upset, and I made some more replacement side dish after I stopped crying. I had to stay in the kitchen to eat, which I didn’t like (it’s far too bright in there, with no blinds), but after all my struggles I got my dinner in the end, and returned to the lounge to watch (don’t laugh) Ben Affleck’s Ant-Man.

After feeling terrible about losing so much independence again, being unable to manage to do things like make food without a farracas, I had (gluten free, dairy free) ice cream. Then I got out my new seated dancing DVD and proceeded to try and cheer myself up.

The Smile and Sway DVD looks like it might be a strange and over-enthusiastic attempt at making ballroom dancing fun… but it’s far more than that. It’s 40 minutes of dancing fun, from ballroom favourites of Tango, Foxtrot, and the Cha Cha Cha, to Big Band and Jazz Hands, via the Jive to a little ballet-esque technique, this is a lovely doorway into a world I thought was no longer for me. To be back in a world of fun dance routines, Fosse-style moves, ballet arms, “Big” arms, and “Big” moves… it was a relief to be engrossed into something I had missed so much, and that was so familiar to me.

It wasn’t all so great: I missed my medication time by over an hour, but luckily there was some downstairs. I had been unable to make my teas, or even any coffee (I can’t hold nor lift the kettle), and had to rely on wine to keep my mounting paraesthesia at bay (I don’t know what it switches off, but it does the trick when necessary). I kept banging into things, and knocking paint off the skirting boards. I had to wait for my mam to come back from work to have some dinner. I ended up watching Big Bang Theory and felt a little sad again about not being able to manage things myself. Apparently I also even somehow managed to burn my hand a little… I didn’t notice until I noticed the red burn  mark on my finger just before I went to bed.

I’m glad to be upstairs, but that also comes with the fact that getting to the bathroom is going to be very difficult. I’ve so far spent hours and hours avoiding it, but I don’t think I will be able to manage putting it off much longer (it’s actually 3:30am now…), and I’m going to have to take up all my strength, courage and will and face the horrid and difficult struggle to get there and back.

My father is also still ill, so there’s a very good chance that I shall be facing the same kind of day tomorrow. This time a few more things will hopefully put in place, and I’ve already had the traumatic practice-run today.

Thank god for that wheelchair…