Category: M.E.

Danni

My Body’s Crap- Can I Have A New One Please?

Autism, Computers, Danni, Gaming, M.E., Penguins!, Physical Disability, Real Life, World of Warcraft

Asked Johan what I should blog about as wanting to blog, he came up with the title 😛

Being this up and down is frustrating. Johan thinks it’s because of my cold. He’s probably right. Although ME is a fluctuating illness, I’m not used to it fluctuating so much in so short a time span. I’m going from being able to play WoW on my computer to curled up in a ball hoping my body will behave or vice versa within a couple of hours, rather than the usual few days. The computer playing isn’t even the cause as there are days I’m waking up in agony and struggling to cope with anything then a few hours later I’m doing much better and can go on my computer. It’s visible to Johan and the carers as well. I don’t go on my computer every time I feel up to it but it’s an amazing distraction and is much easier to pay bills, do the food shop and stuff on there so I’m glad I can do it some of the time at least.

The main downside of this is my nausea is worse than usual. I’m having to take cyclizine more often, and that makes me dopey, and often needing to sleep. With taking it nearly everyday (and sometimes twice a day) I have no sleeping pattern at the moment, which is difficult for Johan and planning things. I wanted a wash this morning but by the time the carer arrived I was feeling very sick and in too much pain to be touched so I’ll have to wait until I’m up to it. I was doing okay (and on my computer) before that as well.

Next week I have an appointment with my consultant. Johan made all the phone calls needed yesterday so hopefully it will actually happen this time. Stretcher transport has been booked, and they’ve been informed it’s time critical and it’s been rearranged twice because of them. The clinic at the hospital know I’m coming by stretcher, are arranging a clinical room to wait in (as stretchers can’t fit in the waiting room – fine by me) and they’ll transfer me onto a bed in there, where my consultant will see me. Hopefully it’ll all go to plan, though the appointment is at 9.15am which is going to be fun. We’ve not been given a time to be ready by so I’m going to aim for 8am, with as much stuff prepared beforehand as possible.

I’ve got to think of what things are most important to discuss with my consultant. Muscle spasms are the big one, as my GPs haven’t wanted to treat it without the consultant having input. My inability to digest food in a timely manner is probably important too, as is discovering I’m more hypermobile than I thought. I’m expecting there’s not much he can do, but he’s pretty good at figuring out what’s ME and what is something else and he might have some ideas that will help. If he had any ideas to make my hands less useless I’d be so happy, but that’s probably asking too much.

I’m desperate for a shower or bath. Bed baths just don’t make me feel clean, especially since the carers don’t wash me how I want to be and I’m not well enough to go explaining it. One of Johan’s difficulties right now is he can’t print or scan anything, so even though I’ve got it typed up they can’t read it. I’m also not well enough to have my hair washed and body washed on the same day, which doesn’t help. I’m also really wanting my hair shaved off again as it’s too long, itchy and making my scalp really sore but that’s not likely to happen any time soon.

I feel like this post has been really negative. I’m still mostly happy, and I have penguins. They make everything better 🙂

Danni

Where Did September Go?

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

Bullet point update post for future reference!

  • I’ve been very up and down, mostly down.
  • Had urine infection. Antibiotics seemed to clear it up. Still have kidney pain, but that’s been going on a while now and I don’t think it’s infection.
  • Johan got PIP! No mobility, but did get enhanced care. We technically could ask for a reconsideration for mobility (he meets the criteria) but we’ve decided that it would be too much, since Johan struggled just with the application. It took about 13 months from the initial phone call to him getting the decision letter.
  • I finally saved enough money for project build Sammie a computer. I picked the parts (with help from Reddit) and Johan built it. I set most of the software up, and Johan finished it since I’d overdone it. Whoops. Johan lent me a bit of money so we could upgrade it a bit, so Sammie now has a better computer than me.
  • Sammie came to pick up the computer with her grandparents and that made me very happy. She loves her new computer, which made it worth it for me. It’s her main Christmas/birthday present (I don’t normally do joint presents but this was a very big one) but she had it early so we could play games together when I’m well enough.
  • Sorting computer and things meant I had payback. Was expected and didn’t last too long luckily. I’ve been sleeping a lot.
  • I’m due my smear test again soon. My GP is going to ask for it to be done at home.
  • I’ve been referred back to gynaecology to sort out my coil (it was meant to be changed nearly 5 years ago). For some reason instead of giving me an appointment in the hospital five minutes away, they gave me one at a clinic near the MetroCentre. That clinic can’t see people who need stretcher transport, so it’s having to be rearranged back at the local hospital. If the original appointment had been there, I’d have been sorted last year as I could still manage my wheelchair then.
  • I should be seeing my consultant at the end of the month. They’ve changed the afternoon appointment for a early morning one, which is going to be fun. This time we’re insisting the appointment is time sensitive, and also contacting the clinic to make sure they understand I can’t get there before the ambulance can get me there. They’ve told my GP they’ll see me that day anyway, so hopefully it’ll happen.
  • The last few days have been a bit bleh. On Thursday I woke up as I couldn’t open my jaw as when I tried there was horrendous pain going up the side of my face. After getting heat on it, I managed to open it where it made a massive clunk. Since then the right side of my face has been very sore. Not something I want to repeat.
  • Yesterday the neighbours woke me up arguing. I felt terrible and ended up needing cyclizine so fell asleep again until last night. My sleeping pattern is now completely broken, instead of just mostly.
  • We have an awesome friend staying for a bit until she can get sorted out. More forms and stuff to inform the relevant people, but at least we’ll get out of paying the bedroom tax 😛 I think she’s on the sofa until I buy the daybed for the living room, as despite what the government claims we don’t have a spare bedroom.
  • Johan bought me a new telly for Christmas! Because my vision is getting worse (I suspect muscle weakness from ME) I was struggling to see the subtitles on the 32″ we have, so he bought me a 50″ one. I can read the subtitles and see what’s going on now, so I’m very happy. He’s planning on going to Sweden next year.

I still feel like it’s August, but my tablet tells me it’s October. Being ill messes up my sense of time. Last time I saw my tree (I now have a blackout sheet covering my window) the leaves were turning red and there were lots of berries. Some day I’ll find out what type of tree it is.

Danni

My Body, The Troll

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

That week when I last blogged? I’d done too much. My body has come up with a new form of payback and I’m not impressed. On top of the normal increase in symptoms, it’s added a high (39-41C) temperature and vomiting to its repertoire.

The first week it happened (starting the day after I last blogged) we didn’t know what it was, but since I couldn’t keep my meds down we got the GP out who diagnosed gastroenteritis. I was a bit confused since neither Johan or my carer had been ill, but went with it. He gave me buccal antiemetics so I could keep my meds and drinks down, and after a week my temperature went back to normal.

The week after that our lovely neighbours decided to play music so that everything was shaking in our flat, including my bed. Despite still being weak from the payback, Johan got me into my wheelchair to find the quietest part of the flat, which ended up being the hallway. The suspension on my chair also absorbed the vibrations, which was good.

Unfortunately the combination of being out of bed and the music caused more payback. Knowing more what we were dealing with now, I went into rest mode and we kept me dosed up with antiemetics and ibuprofen to keep my temperature down. It only lasted 5 days that time but I was even weaker afterwards.

I was just getting over that when I was woken up by loud music playing. It was nowhere near the level of last time, but I had sleep paralysis for a while so couldn’t get my ear defenders on. Once I could move I put them on, but the damage had been done and I had another load of payback. Possibly because the event triggering it wasn’t so bad this one was shorter, lasting just a few days. It still sucked though, and I missed Doctor Who.

I’m now feeling weak but better than when in those payback episodes. I’m hoping to be well enough to watch Doctor Who soon. I have been watching The Great British Bake Off (less thinky than Doctor Who) and enjoying that. My sleep is all over the place and I’m needing a lot more of it than is even usual for me, but after what my body has been through I’m letting it do what it wants.

Other than that I grumbled to the CFS team when they visited, my DLA renewal form has come through (I’m glad it’s not a PIP one), and played far too much of the Kim Kardashian Hollywood game (which I’m finding a lot of fun, even though I don’t like Kim Kardashian).

My normal carer is off so I’ve been having to deal with a lot of new carers. Some have been good and understanding, some less so. I’ve been trying to be awake for at least one care call a day, but even that is hard sometimes. Johan has had to deal with the carers when I’m asleep which hasn’t been good for him, but until we can find a solution to a fixed time call when my sleep is variable (for both autistic and ME reasons) I don’t know of a solution.

Johan has had his PIP assessment. I really wanted to be with him at the time but after the payback I was getting I knew it was impossible. I gave Johan a note to help the assessor communicate with him if he got anxious (luckily it wasn’t needed, but it’s gone in as evidence now) and he said it went about as well as it could have. He’s now checking the post every day in the hope of a brown envelope telling him if he’s been awarded it or not, but they’ve all been for me so far.

I’m a bit fed up of being ill now. It’s been 5 years since I got swine flu, which triggered my ME. The new payback hasn’t helped. I’ll be asking to see my usual GP next week or so to check the temperature isn’t due to an infection or something, and to ask a few questions about other symptoms. I just want to get better, or at least stop getting worse. I’ll get there, but it’s looking a long way away right now.

Danni

I Miss Singing

Autism, Computers, Danni, Gaming, M.E., Physical Disability, Real Life, World of Warcraft

One of the things I miss most now is singing. I used to sing to express emotion, and just because I enjoyed it. I wasn’t too bad at it either- I could normally keep in tune at least, and some people liked listening to it. Now I can’t. I know why- I don’t have the energy, memory or concentration, and my breath control is nowhere near good enough, but it still upsets me when I really really want to sing but know I can’t.

I think I’m starting to get a bit better after that relapse from the care home and stuff. Unfortunately after two good days my digestive system decided to play up (at one point mimicking the symptoms of appendicitis to scare me) but it’s mostly behaving again now (or at least back to normal levels of grumbling). Hopefully I’ll be able to be doing more again soon. I was a bit naughty and did some tidying up in my bedroom, once even getting out of bed (and shuffling on the floor on my bum when I discovered I couldn’t crawl). My sitting is better than it was, though my neck and back are still weak (my sitting on the floor was mostly bend over double with my head on my knee- luckily it wasn’t too  uncomfortable :P).

Because of needing cyclizine to control really bad nausea (thanks to the digestive issues) I’ve been really dopey and out of it the last few days, as well as sleeping lots. I’m grateful I have my Chromecast as just putting random non-thinky stuff on there helps (sometimes I even just have the default screen with the photo slideshow on in the background so I have something I can look at). I got my birthday present from Johan this week, along with a few other stuff. My present is a purple t-shirt with a stick figure in bed, saying “My awesome is on strike.The duvet is overseeing essential negotiations…”, which is perfect for me. I love it 🙂

I really need to cut down on my Facebook useage. It’s the most draining of the social networks yet it’s really easy to be pulled into spending loads of time reading groups and stuff. I don’t want to leave it completely, but will need to think of a solution so it stops using so many of my spoons. Conversations through it are particularly draining, especially when they involve drama I don’t want to be involved with. It’s my only way of keeping in contact with some people I love though.

I don’t think I have anything big planned for a while. I think I’ll just take the time to do things that I’m able to do, and continue planning some big stuff (like going abroad, which I’m aware will be a bit into the future yet). I’ve resubscribed to World of Warcraft as I was missing my friends in there and I have stuff to do, so if I’m having a good day it’ll be fun to go in there. I’ve also got other games to play, and I still have the Young Wizards books to finish reading. I’m hoping to watch a couple of films if I can, so that will be good. I wish I were able to make firm plans, but that’s something this illness doesn’t allow. I find out how I’ll be doing at the time, and only have a limited amount of control over it. I try to make everything worth it anyway, and that’s mostly working 🙂

Danni

Wow…

Autism, Computers, Danni, Gaming, M.E., Minecraft, Penguins!, Physical Disability, Real Life

I was not expecting as many people to see my previous blog post (either here or on Tumblr) as actually did. I now have about three times the followers on Tumblr as I did before it, which is kinda scary.

I’m working on communicating better with my main care worker. Some things are a bit better for it, others I still need to figure out. I’m not sure if I’ll be showing her the post or not (I want Johan’s opinion but he’s too meowy to give it at the moment). The main issue will be there though even if it gets better with one person.

How bad I communicate became even more obvious when I had a new care worker this week. She’s nice, but there’s something about her that makes me not want her to be near me and Johan not want her to be in the flat. Since she’s meant to be providing my personal care, that’s a problem. I’m going to have to ask the agency if they can send someone else instead (my main care worker now has Sunday’s off, which I’ve been telling her to get back for months now). If I can’t ask myself my main care worker has said she’ll speak to them for me. It would be easier if I knew exactly why I’m having trouble with her, but I don’t. She’s just not a good fit.

Penguins imprinted on leg
Penguins imprinted on leg

Yesterday I had penguins imprinted on my legs from my knee high penguin socks. I also had a really sore band where one of them had been digging in. I never used to have this problem with socks but I do now. Having penguins on my legs is cool but I don’t think it does them much good (and they’re itchy and a bit sore). I think I might need to look into some socks that are less tight, though as my legs are rather skinny (from disuse mostly) I don’t know how easy that’ll be. Ones without seams will at least prevent it digging in there.

I’ve been getting a bit frustrated by being stuck in bed. I’ve still not got back to where I was before I was in the care home, and I’m having to be careful about sitting up (though I do try to sit up at least once a day, in an attempt to convince my body that it’s not a bad thing). My nausea levels have been pretty bad and the cyclizine has been messing up my sleeping patterns. This doesn’t help with trying to plan my days, or even working out if there’s a better time for the care calls.

I finally got around to putting my medication in my pill box (one with separate boxes for each day of the week, and five slots in each for meds- four for regular medication and one for as needed). We’ve discovered that most days I don’t take all my medication because I’m not awake enough- I’ve set it so I take domperidone (to be taken before food three times a day) with the first three lots of tramadol, but some days I only have two. I also ended up basically skipping Friday because of an extra long sleep on Thursday. The good thing is it did let us know in good time that I needed more medication so Johan was able to order them before I ran out completely (due to the doctors being closed when he tried to order them the first time I would have run out Sunday evening if I’d taken every dose of tramadol, but by that point I had at least four extra doses so it was fine and he’ll pick them up today).

One thing I think I forgot to mention in the update post is I’ve finally been approved for the hoist! I’ll be getting a ceiling track hoist in both the bedroom and the living room, as well as a tilt in space shower chair. The hoist will be at least August before installation, and Johan has quite a bit of work to do in the living room beforehand, but he’ll get there. I am really excited by it as it would mean I could get out of bed even if I’m not well enough to transfer independently, which would be really good for me.

I’ve been playing a bit of Hearthstone, a bit of Minecraft, a bit of Long Live the Queen, and some games on my tablet like Ninja Chicken Multiplayer Race and Pocket Legends. No idea what I’m doing on the tablet games but they’re a good distraction. Also managed to read the second Young Wizards book today when it became obvious sleep wasn’t happening, and I liked it even better than the first. I want to read the third now but I have to be careful not to try and read too much at once as it’s so easy to overdo it (and one book every few days is enough for me right now).

I watched the World Cup final, supporting Germany (I’m quarter German). They deserved their win, but I got really worried by the amount of head injuries during the entire tournament. There were a lot of times where I thought they really shouldn’t have continued playing, as some of the players looked more out of it than I normally do (which is saying a lot). It was fun to watch though, and nice to support a team. Johan has been having fun watching it, and I’m trying to convince him to support Liverpool in the premier league (they’re my team because I’m a Scouser :P).

Had a few problems with people trying to break into my blog last night. It didn’t help that for some reason the security plugin had stopped working properly and wasn’t blocking those who were trying to brute force. Johan was clever though and managed to fix it. I found out about it because I was getting the emails for each attempt- I think there were over 25,000 by the end of it, including the 5,000 that Johan just deleted from the mail queue. It wasn’t fun but sorted now. I’m so glad Johan is able to do server stuff as my brain isn’t good enough to do more than the very basics now (I accidentally dropped a table instead of deleting a row in one in mysql a few days ago- I really need to install phpmyadmin so I don’t mix my commands up again!).

I should probably sleep soon as I’ve been awake since last night. I’m hoping everyone is as okay as they can be, and I’m just glad I’m well enough to do some stuff, even if I’d like to do more 🙂