Tag Archives: active wheelchair

Independent Struggles

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??

 

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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).