Category Archives: Hemiplegic Migraine

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…


Great Expectations…?

I actually have real “Kid on Christmas Eve” type jitters… My new chair is coming tomorrow, and hopefully a whole new world of freedom to accompany it.

I do hope I’m not setting the bar too high for disappointment – it’s quite a common theme with me, after all. However, I suppose I should still hope without being actually bouncy-excited. There’s always that capacity for bad things to happen.

Instead, it will hopefully the start of being given another new chance to embrace opportunities old and new.

From something as simple as a trip to Tesco, to going on holiday somewhere, that chair is going to make a big difference in my life, will offer freedom. I’ll be able to do things and go places in it, and I’ll finally be able to move about and leave the house again.

The last 6 weeks or so has been torturous… and now the end is near. I haven’t slept all night last night, and I haven’t slept since (yet, at least) either. I presume I shall sleep tonight I, quite early. That whole Christmas Eve thing has been in my head since I was quite young – and I mean that idea that the faster you go to sleep, the faster it’s tomorrow. It works backwards too – not sleeping or falling asleep late makes a dreaded next day appear far away.

Well, when I wanted Santa to come I made a point to fall asleep quickly – being unconscious in sleep means that the next day appears only a second later. You wake up and there it is. You’re not at all aware of the 8 or so hours that bypassed during that time.

So that is what I hope to be implementing tonight, and I think that might happen because I’ve behaviourally done such things since I was a child.

I just hope it all goes well (knock on lots and lots of woods).

 

 

 


Better News

The weather is still terrible and the isobars continue to fall… and having checked the weather app, it appears this is expected to continue all the way into July.

Quite typical, really, considering the news I’ve been given today – you know, after the four days of hot weather and nice days we had…

I’m finally getting my chair on Friday (it’s Monday today) – Horrah! The nice lady who had been dealing with this even took the time to say how much she actually liked it (I put some interesting design choices on it) and that all the colours etc went really well and it looked great. So I’m hopeul I shall appreciate it for its practical and aesthetic reasons.

There is a long way to go still to stabilisation, but this is definitely a trophy chievement award along the way.

Three more days until Parole… 😋😎

 

 

 

 


25 June 2017

 

The weather strikes again… It’s June, for crying out loud – surely I deserve a break at some point? The isobars are down to 1011mb today (thus far), and will be falling all the way down to 999mb by Wednesday. What on earth is going on here?

Summer was apparently a few days last week. That might probably be it – but even then, the high isobars were only a couple of days in total. I feel like I’ve been made out of electrified cement.

I didn’t sleep last night (Again). I’m so exhausted. My sleep patterns have been all over the place – so much so I’ve been passing out from exhaustion into (yes, literally) unresponsive unconsciousness for hours. In all honesty, right now, there’s probably a good chance this will happen again – despite trying to stay awake at least just long enough to watch the Queens Club Tennis finals. I missed the entire Quarter Finals because I somehow passed out and didn’t wake up until around 7pm… I’m not missing the end game!

It’s annoying having all this energy to waste that I can’t do anything with anyway, then the Isobars drop so much that you can’t even move at all hardly, making things even worse. I’m going stir crazy, all pent up, climbing the walls, being unable to move let alone expel energy, and now just staying conscious is becoming an issue. I’m actually buzzing inside, and I’m getting ready to start chewing the furniture at this rate.

Because of this, I also find it pretty much impossible now to do anything that involves relaxing and lying back or down. Not just sleep, but reading, writing, even playing games, gets to be impossible, because you just want to go outside and run about – or in my case, wheel really fast around everywhere. That’s if the Isobars agree, that is…It’s so hard to move when you feel made out of cement. I also don’t have an appetite anymore because I’m not burning much of anything off. Imprisonment is not fun.

I have no idea when the chair is coming, but quite frankly it cannot come soon enough. I’m literally being rendered unable to do much of anything because of all of this, and watching TV doesn’t count. At all. I need burn off all this excess energy before I chew through all the furniture and move onto carpets and shoes.