Category: Physical Disability

Danni

The Good, the Bad, and the Beautiful

Danni, M.E., NaBloPoMo, Physical Disability, Real Life, World of Warcraft

Mixed day today. Went on my computer after waking up, spent too long on there (silly Danni) but painkillers helped with the pain and was in a good mood this morning. Johan also awake early (I woke at 4.30am, his alarm went at 6.30am) as he was going to Colin’s wedding today. After spending 20 minutes persuading him to give me cuddles instead of dozing on the sofa, he gave in and we both had an enjoyable half an hour on my bed. Then he got me dressed (Diablo 3 t-shirt for the win!) and went and sorted himself out.

We hadn’t arranged anyone to look after me as I had been hoping to attend the wedding, and when it became clear I was too ill it was a bit late to ask anyone, and we also figured that as the carers would be coming and he was close enough if there was an emergency, we’d be able to cope. He left for the wedding at about 10am, when the carer was due to arrive.

She didn’t turn up. I sent Johan a text message at 10.55am (wedding was due to start at 11am) to tell him, so he could contact the agency, which he did at 11.30am (after the ceremony was finished). She eventually turned up at 11.50am, but didn’t come in, only knocked (we leave the door unlocked for the carers so they can come straight in) forcing me to crawl to the front door, and causing me massive amounts of pain. She helped me back into bed (after fetching my wheelchair from the living room) then kept asking me lots of questions, that I was in too much pain to answer. In the end I had to ask her to leave, as I was scared (I was close to melting down at this point). I asked Johan to come home, and he did, missing the wedding meal. He phoned the agency and told them we’re not happy, listing all the reasons.

Soon after he arrived back home, the post arrived, including my corset. He helped me get it on, and I was able to sit up straight for the first time in a long time 😀 It’s also beautiful, so I’m really happy with it. I’ll need to figure out lacing it, and what to wear it with, but I already love it and I’ve only worn it for 20 minutes. I may use it to be able to sit up to get to the appointment next week (which is on Wednesday, as the letter arrived today). I’m still worried about it, but the corset will at least prevent me from flopping (and it’s comfortable to lie in, as well).

I’m now planning on sleeping, but will have to ask Johan if he wants to go to the wedding party thing tonight. I’m still in massive amounts of pain, and I’m hoping for the least amount of payback from today (I’m still suffering the payback from last Wednesday- mostly more pain than normal and less stamina for stuff, and needing to rest more).

Danni

Sleepy Danni

Danni, Gaming, M.E., NaBloPoMo, Physical Disability, Real Life

Still feeling really ill and rubbish after the hospital appointment. Pain levels have been up so taking more tramadol than normal. I’m trying to stay awake until after the carer has come (6pm as it’s meant to be a bath call, though I’m not well enough so will ask for a wash in bed instead) before going to sleep.

Hospital phoned this morning and want me to go back next week. I want to go, but am worried. Will need to plan it very carefully, to make sure I don’t get as ill. The main thing is being allowed to lie down- if they can help with that, I’ll be okay. If not, then I can’t go as I can’t risk a repeat of Wednesday. We’ll see.

Spent most of the day trying to catch up with blogs. Getting there, just a few more days worth to go. I have my laptop on my overbed table as it’s easier to read on here. It also means I can play the Sims Social a bit.

It’s Children in Need tonight, but not sure I’ll manage to see much of it. Johan is going to the MetroCentre and Asda later to buy some cordless phones (as he missed a call twice because he was in a heroic in WoW) and some trousers as he’s got a wedding to go to tomorrow (Colin’s). I’m sad that I can’t go to the wedding, but will celebrate from home. Maybe Johan can buy me a small cake? We’ll see. I’m getting hungry now so going to go demand some food.

Danni

Yesterday

Computers, Danni, Gaming, M.E., NaBloPoMo, Physical Disability, Real Life

Since I can’t be bothered to type it again, here’s what I posted on a forum about yesterday:

Made it to the hospital yesterday in a taxi, but got really ill during the appointment from sitting up and they sent me to A+E. Limbs jerking themselves around, and ended up halfway down my wheelchair held in by the seatbelt around my chest. Not comfy.

Things calmed down once they let me lie down and rest for a bit, then they sent me home sitting up in an ambulance, which was pure torture. Managed it (only scaring the ambulance man a little bit), and the ambulance men carried me upstairs and to my bed, and I slept a few hours afterwards.

Johan and I have agreed I’m not leaving the flat again until I’m back to the functioning level I was at the beginning of September, where I could sit up for a few hours without getting worse, as that’s what is needed if I want to go anywhere. If I lived in a ground floor flat I’d just get a reclining wheelchair and be done with it, but we don’t and we’ve not heard from the housing for a while.

The dentist doctor (I’m sure she has a proper name) came to see me in A+E and said that as I’m too ill for even the assessment the anaesthetist won’t give me a general anaesthetic, so I won’t be able to have my tooth removed (sedation and local anaesthetics don’t work for me). I’ve been trying to put up with it for a year now, so I guess I’ll just be going on lots of antibiotics and begging my doctor for painkillers that work on toothache, since tramadol doesn’t work.

I’m a little upset because I know that if I’d been allowed to be transported lying down, none of this would have happened. It’s just sitting up my body dislikes, and it has its ways of showing this. Hopefully staying at home and resting for the next few weeks/months will help.

That’s mostly it. Today I’ve watched Catreina play Skyrim,  bought Oblivion on Steam, failed to get it working on my laptop, and slept a lot while Johan went to the MetroCentre (he prefers going out when I’m asleep, so if there’s a fire I’ll burn to death :p). On Saturday it is our friend Colin’s wedding, and I’m not well enough to go :'( I’m sending Johan though, and getting him to take lots of photos so I can see what he’s wearing (and also see his family :p). I never thought Colin would be the type to get married (and to have kids, since his fiancée has some) but he has matured a lot since he was throwing mouse mats at lecturers in college a few years ago. His fiancée is lovely though, so I’m hoping they’re very happy together 🙂

Edit: It really helps to press publish, silly Danni.

Danni

Sickness

Danni, M.E., NaBloPoMo, Physical Disability, Real Life

Haven’t got the transport situation sorted. Will just have to see what happens tomorrow. Hopefully I’ll be well enough to get up the stairs. If not I guess I’m camping somewhere :p

Today has been rather mixed. Woke up this morning with at about 6am (went to sleep around 9pm last night so that’s actually rather normal), used the commode, stood up for a few seconds, and felt really nauseous. I also had the most horrendous headache, and was completely intolerant to light (I couldn’t cope with the small LED lights on mine and Johan’s computers). I tried to drink a small amount of water to ease the headache, thinking it was dehydration, and started vomiting. By 6.30am I had to wake Johan up because I’d run out of sick bags. I managed to get one of my antisickness tablets (which dissolves between the gum and the lip) around the same time, and by 7.30am I’d stopped being sick long enough to take my new antisickness tablet. Luckily the new one works well, though it does make me drowsy, so I had a nap from 11am-1.30pm.

I had set an alarm for 1.30pm as Gateshead Carer’s Association were coming out at 2pm to see how they could help Johan. He was also asleep (silly sausage didn’t go to bed until after 4am, and then I’d had to wake him up a couple of times to help me with taking meds and changing pyjamas and things) and didn’t wake up until 2.05am. Luckily the people were running late so it was okay. They were both advocates, and they were very helpful, and are going to help Johan with sorting out a care home and talking to my social worker and stuff. They’re also going to provide him with information about some of the carer’s groups he can go to, which will be good for him.

This evening I felt quite a bit better so had a bath (yay!). Johan changed my bedding as my aim wasn’t brilliant this morning, and he helped me into my new penguin pyjamas, so I’m all clean. Lovely Icelandic carer came a bit later, and she brushed my teeth and sorted my hair out, putting it into another French plait (until I had my bath I had still been wearing the one she put in last Wednesday). Since then I’ve managed 20 minutes sitting at my computer, and have just been doing random stuff on my tablet. Will be going to sleep soon as the hospital appointment is at 10am, and that means leaving at about 9am tomorrow. Eek. 

Danni

Transport Problems

Danni, M.E., NaBloPoMo, Physical Disability, Real Life

My toothache is now just a dull ache, rather than a sharp, unbearable pain. This has meant my mood has improved a bit and I’m coping slightly better.

I’m still panicking over things though. On Wednesday I have a pre-assessment appointment at the hospital for the operation to remove my bad tooth (which is scheduled for 2nd December). It’s been bothering me for a year now, and it’s at times making me suicidal when the pain gets unbearable. It definitely needs to come out, as soon as possible. The problem is I can’t get suitable transport to (and more importantly from) the appointment. At the moment I can sit in my wheelchair for about 10 minutes before I start getting increased pain and my muscles start failing me. If I try to remain sitting in my wheelchair, I flop over at the middle because my back just won’t keep me upright anymore. I also lose the ability to move my limbs. This happened on Thursday when I went to see the GP- a local appointment for about 30 minutes including travel time. Johan had to drag me up the stairs, causing us both a lot of pain and danger (as I kept slipping and my leg jerked, nearly kicking Johan down the stairs). I’m still nowhere near close to recovered from it. We both know we can’t repeat that, as there’s too much of a risk of one or both of us getting seriously hurt.

The normal patient transport ambulance requires me to sit up in my wheelchair for the entire journey. Not only that, it will go around the world picking up passengers before getting to the hospital, so what is a 20-30 minute journey by taxi will take at least an hour. The appointment itself is meant to last an hour, according to the letter. Then there’s the travelling back, plus any waiting time (which can be hours). I can’t sit up that long. Ideally, I’d travel lying down, which would mean I might even manage sitting up for most of the appointment, but apparently that’s not possible. Instead, I will be getting a taxi and lying down in the back of that, as well as is possible while wearing a seatbelt. Which is fine- I’ll get there, have the appointment and ask if there’s a floor somewhere I can lie down on if I need it (I have lost all embarrassment at lying on the floor). Then I’ll get a taxi back.

Here’s the problem. I can get to the front door, but I won’t be able to get up the stairs. Dragging is not an option. Johan says I’m not allowed to sleep at the bottom of the stairs (and we do share them with our next door neighbour, so it’s not fair on them). Any form of lifting will require more people and equipment we don’t have. So I’ll be stuck. My question is this: who do we contact when this happens? Is it social services? Is it someone else? I know the ambulance service have a carry chair that will get me up the stairs (though they hate doing it as the staircase is very steep), but I don’t think it’s an emergency as such so I wouldn’t know how to contact them. My GP is the one who told me I can’t have suitable transport.

Any suggestions on who to contact (either before or when it happens) are welcome.