I’m scared. Pain is getting unbearable but don’t think hospital is a good idea. Swallowing is getting harder. I need to cough but don’t have the strength. Moving in bed is almost impossible without help and using my tablet is getting harder. My DLA form still isn’t finished and my award runs out January. Don’t have the ability too get help even after being told where to get it. Getting new printer tomorrow to print it all out but it’s not finished and Johan won’t let me finish it. I’ll be sad if I fail NaBlPoMo so close to the end but I’m still getting worse so not sure how much longer I can use tablet for.
Category: Autism
Random Title Here
This isn’t the blog post I was wanting to publish today. I have one started but not finished on self worth. Unfortunately, typing is hurting my hands too much so it will have to wait until I’m doing a bit better, as today I’m doing worse than yesterday. When i signed up to NaBloPoMo I was hoping not to relapse during it. Oh well.
If you’re not already, you should go follow Johan on Twitter. His Twitter name is @JohnUK89. Also, he needs to blog more so if you can tell him to write a blog post, that would be cool. His blog is at http://jbrennand.co.uk. He claims he’s no good at it but I disagree.
Fuzziness
The world is very fuzzy to me now. Staying conscious is hard work, and I’m not very with it. Johan is having to do a lot of guesswork as my brain fog is worse and I forget what things are, and how to describe them. Luckily he is very good at guessing what I might mean.
According to someone important in the Tory party whose name I can’t remember right now (though I guess it could be any of them) I shouldn’t have a lifestyle while living on sickness benefits, and I should take risks to work. What happened to the most vunerable will be protected? I think they’re no longer even pretending to believe that now. I’m not sure what job they think I’ll be suited for. I’m typing this through a fog of exhaustion and blurry double vision, so please excuse any mistakes. When I was doing much better than I am now social services panicked when Johan went into hospital and put me in a care home, and I know that’s the plan if anything happens to Johan again. I’m not even well enough to work as a bed tester as I need Johan to roll me over to prevent bed sores, and the only bed I can test is my own.
Johan technically can work, but his job right now is looking after me, for which he gets a whole £30 added onto the income support for. I’m not currently well enough to calculate the full total of our benefits, but I’m pretty sure it’s lower than the costs of me being in a care home, which is what would happen if Johan had to get a job. He’s already on call 24 hours a day, 7 days a week. Maybe that Tory guy who thinks we’ve got too nice a lifestyle would like to swap with him? I’m sure Johan would love to stay in a big house with lots of free expenses and the possibility of 8 hours sleep at night without worrying about my health. The Tory guy can roll me over, help me onto and off the bedpan, wipe my bottom, know when I need what medications since I can’t help much with that, spoon feed me, and everything else that Johan does, for the same money we get. Any equipment either has to be agreed by equipment services (and may take months to arrive) or has to be bought from my DLA.
Danni need sleep now. Blog again tomorrow when conscious enough.
Body, Stop Trolling Me
I’m relapsing again. Back has come the hypersomnia, light, noise, smell and touch sensitivity, severe pain that the tramadol barely touches, struggling to be able to lift my head from the pillow, and I can’t roll over. Yesterday I blogged saying I was grateful that I could still roll over, and when I woke up I couldn’t. Last week the gallstone type pain disappeared just after my doctor had seen me and organised an ultrasound. A bit of consistency would be nice.
I do know the reason for this relapse. The noise at the beginning of the week as our upstairs neighbours were getting a new boiler was too much for my body to cope with. I was hoping that we’d done enough to avoid it making me ill but obviously not. What hasn’t helped is I’d not recovered from the previous relapse yet,
We know what to do during a relapse now. Johan will roll me over every few hours. I will be sleeping and resting lots. We’ll keep an eye on my pressure spots to make sure they don’t go beyond discolouration. I eat what I can when I can, and try not to worry too much about it. Johan gives me my medication as often as I’m allowed. If I stop drinking, urinating or the pain becomes completely unbearable we get help.
I’m scared. Every time I’ve relapsed I’ve lost some functioning. I don’t get back to the level I was before. I’ve already had to hand over so much responsibility to Johan he’s struggling. He needs someone to look after him and when I’m really ill, I can’t do it. I’m hoping this will just be a short blip and we can go back to normal soon. I have my friends and my penguins and Johan so I can get through this. I just need my body to stop trolling me (and for upstairs to stop making so much noise, as they’re currently arguing and banging on the floor/our ceiling).
Today
(All times are approximate.)
9.30am- Woke up to the most horrendous metal on metal clanging noise. Body screaming at me, feeling extremely nauseous and deathly ill. Not the nicest way to wake up. Johan comes in, gives me painkillers and anti nausea tablet and heats up penguins for me. I put ear defenders and sunglasses on, Johan puts curtain up over blind to block out more light.
10.00am- Morning carer arrives. Feel far too ill to have any personal care done, there are no dishes and there’s no way I could cope with the washing machine. Carer tells me to feel better and signs the book and leaves. Not long after, drilling accompanies the metal clanging noises.
10.30am- Anti nausea tablet kicks in so I stop feeling like I’m going to throw up. Go on tablet with sunglasses on to distract myself from the noise and how ill I’m feeling. Go on twitter for a bit. Noise continues.
11.50am- The sedative effect of the anti nausea tablet kicks in. Swap sunglasses for eye mask, and fall asleep. Still drilling, banging and metal clanging noise.
Some time later- Wake up to pain from ear defenders (I sleep on my side and they’re not the most comfortable things to wear, though using my neck cushion around them helps). Notice noise has stopped so take them off. Fall asleep again.
At some point during this time Johan goes to Newcastle, buys Munchkin and some dice, and comes back again. I don’t notice as I’m asleep.
6pm- Wake up. Feel drugged up but not as ill. Johan comes into bedroom and is very excited about dice and Munchkin. Tells me he wants to play it with me some time. I agree. I go on tablet and go on Twitter again, with normal glasses as not as light sensitive any more. Johan gives me painkillers and heats up penguins for me.
7.00pm- Feel a bit peckish, so get some crackers from my snack drawer and Johan brings me some cheese. They are nommy.
7.30pm- Still feeling really drugged up and drowsy but pain is bearable. Decide to go into living room as don’t know if the morning will cause me to relapse and want to get stuff done. Johan helps me into my wheelchair, tilts it back, sorts out my pillows, and pushes me into the living room. Go on computer and play games.
8.30pm- Evening carer arrives. Language processing is all used up from chatting to Johan earlier, but know that body is too delicate to manage any personal care. Johan takes book out for evening carer to sign. I’m in World of Warcraft and wanting to get my dailies done as I can do them almost on autopilot now.
11.10pm (now)- Still on computer, writing this blog post. I feel okayish so long as I don’t move. Ability to chat is broken, but can type randomly okay. Will be going back to bed at some point. Still feel very drugged up but could be worse. I’m hoping that we did enough this morning that I don’t relapse, as too much noise is my main relapse trigger. Won’t find out for a day or two, so am doing preparation work in case I do relapse.
And that is why I’ve not written a proper blog post today.