Category: M.E.

Danni

Bumpity Bump

Autism, Computers, Danni, M.E., My Little Pony: Friendship is Magic, Physical Disability, Real Life

Things with the new carer aren’t going as well as we hoped. She’s new to caring and makes a lot of assumptions that aren’t true. We also feel very uncomfortable with her in our flat and she gives out far too much information about her other clients, which isn’t good. She’s also really late to every call- over 40 minutes late this morning. I know we said being a bit late was okay, but without contact that’s too much.

We’re going to have to email the care agency to see if we can change main carers as this isn’t working properly. She is so loud she wakes me up when I’m sleeping, which is not good for me. We knew it wouldn’t be the same as with Lovely ex-Carer (who says I should now call her Crazy American now, but I’m not so sure about that) but the other carers we’ve had from this agency have been nicer and easier to deal with.

Johan is also not doing as great, but we think it’s directly related to the new carer. Things got a bit scary yesterday morning as he really wasn’t coping, but I managed to calm him down a bit. Some of it is the change (it was affecting him before it happened) but some of it is not coping with the new carer. As I’ve been asleep he’s had to try and deal with her by himself, and it’s not really been working well.

My sleep has gotten a little out of it’s normal pattern. The new carer being so loud as to wake me up isn’t helping, as it made me overtired and made it even harder to get to sleep. Bleh. I’m hoping to nap soon to try and catch up as I feel exhausted.

I’ve managed going in the living room every day for the past few days 😀 I may be fully tilted and reclined in my wheelchair, but it means I’ve been able to go on my computer and play some games. I also went into the living room for Lovely ex-Carer’s party after she’d finished work. We watched My Little Pony: Friendship is Magic (she does like it :P) and had chocolate cake. It was awesome. We’re already missing her.

This blog (and my old one) has moved servers. Since J & D Hosting is closing down, Johan has found a VPS and he’s hosting my blogs on there as I’m not well enough to do the management bit now. He didn’t know originally, but is learning 🙂 There were a few minor issues but it looks like everything is working okay now.

Johan has gone to watch some cricket. He’s at Durham to watch them play against Lancashire (he wants Durham to win). It’s 20Twenty so only lasts about 3 hours, which is good. I’m probably going to nap so will be okay. He’s not been to see cricket live before so I hope he enjoys it. He picked out his seat and the photo he posted on twitter shows he picked well 🙂

https://twitter.com/JohnUK89/status/221949618517315585

I upset my sisters. I have very low tolerance for intolerance of any kind (which is a big failing of mine), especially from people who should know better. They didn’t understand that generalising about a group of people on the grounds of race is racist. I shouldn’t have said they were publicly but I was very frustrated. Some friends tried to explain better but were attacked by Becca, who also wrote a very upsetting comment about us needing to get off the computer and get a life (all of us are ill in various ways and degrees, and being on the computer helps).

That was related to the horse. I’m not sure if it’s still there (I haven’t heard it since Friday) but Lovely ex-Carer has seen some people there looking after it and it has/had water and stuff so I’m less worried now. It certainly looks happy and in good condition (I went to see it on Friday morning) so while it’s random, it’s not too worrying.

I think I’m going to nap now. I’m liking being able to get out of bed, but stuff is very tiring.

Danni

Wheelchair Fun

Autism, Computers, Danni, Gaming, M.E., Mental Health, My Little Pony: Friendship is Magic, Physical Disability, Real Life, World of Warcraft

Okay, being realistic Leeds is probably a bit too much at the moment. I will stick to travelling locally until I can do that reliably and without payback before trying to travel further. It was fun planning though and means I have an idea where to stay and what trains to get for when I am well enough to go 🙂

Wednesday I managed 4 hours sitting in my wheelchair in the living room, and was fine. It was tilted and reclined, but still I was out of bed for 4 hours! I was even able to do a proper raid with my guild (Dragon Soul) for the first time in months which was awesome. They were very understanding of me when I made mistakes and stuff, and we got up to (but haven’t beaten yet) Spine. I hope to go to the continuation on Monday if I’m well enough 🙂

Thursday I had a wheelchair assessment with the district nurse. We thought the appointment came through a bit quick and it turns out she only does basic attendant chairs, so she can’t help me. She took my measurements though and has referred me to the proper team to try and get me a suitable chair. She’s put that I need proper support and a reclining chair, and what chair I have now so it should be good. I’m hoping to go to equipment services as they have all the different types of chair there and it would be easier to find something suitable. We’ve been warned that it will take a while but it will be much better in the long run.

The 15 minute appointment completely wore me out. Turns out talking about stuff that requires thinking is still one of my most exhausting things. I think it goes with physically being better but not so much cognitively. I was hungry though so had green Thai curry for lunch. I managed to eat it myself with a fork! I used a plastic fork (purple, of course) with some tubing on the handle to make it easier to grip, and it worked! My hand was spasming a bit but I just kept swapping hands and rested every mouthful, but I fed myself with a fork! Yay independence! 😀

I had to have a nap not long after. Johan went to the Autism North East committee meeting. He promised to be home before Lovely Carer was due but wasn’t. Luckily she waited around (she thought something was up as we normally let her know if Johan is going to be out). I panicked and felt completely helpless as I could hear her outside but was unable to go let her in. It’s shown it’s even more important to get a key safe so that carers can let themselves in. Luckily Lovely Carer and Johan calmed me down, then Lovely Carer helped me into pyjamas (I had been wearing a dress) then used the no rinse shampoo to wash my hair. I think she also washed some dishes.

I’m on my computer again now. I’ve played some Bejewelled and now I’m going to do Darkmoon Faire dailies in World of Warcraft. Then I think it will be back to bed as it’s quite late already. I’ve covered the ends of my armrests with penguin socks as they were slightly torn and the socks I can’t wear as they’re too small. I think they’re cute 🙂

The cleaner didn’t turn up on Wednesday. I am not happy with this as we didn’t get any warning. I sent an email but haven’t had a response, so we might need to phone. Lovely Carer did some of the cleaning the cleaner was meant to do but she doesn’t have enough time to do the bigger jobs like mopping floors and stuff.

We have finally had our cooker fitted! Once we found an electrician and Johan phoned them, they could come out the same day (Wednesday) and it only took about 10 minutes to do. It means I can have a roast dinner when I’ve done the shopping. It was so quick and easy and not too expensive (£45) that I feel a bit silly it took so long. It’s sorted now though 🙂

I’m happy that physically I’m still improving a bit and can do a bit more for myself. Hopefully this will continue.

There is a horse in the field next to our flat. This is not normal. If it’s still there in the morning we’ll contact the RSPCA as we don’t think it should be there. I want to go see it first though as I love horses and miss seeing them now I’m in the middle of Gateshead (at our old flat we were less than 5 minutes from the nearest field with horses, and people with a horse and trap used to go by pretty regularly).

Johan has fallen asleep on the sofa. He has not been having a good couple of nights. I wish I could help but I don’t know how 🙁

Latent Existence has started watching My Little Pony: Friendship is Magic. I think he’s starting to like it 😀 It is an awesome television show for kids and adults. I’ve also given Lovely Carer the link to the episodes as I think she will like it as well. I’m also thinking of watching it again- the episodes are on (US) Netflix so it’s easy.

Tomorrow we are meeting the carer who is replacing Lovely Carer when she comes tomorrow morning. I hope she’s nice. With Lovely Carer it’s been so easy as she understands me so well almost intuitively, but I can’t expect that from the new person so will probably have to explain how to do things and about ME and stuff. That’s going to be harder. Hopefully it will work out in the long run though 🙂

Danni

Ah Bah La La Bah

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

The title is what I’m able to say without massive amounts of concentration. My brain is a bit fuzzy so English is a tad hard 😛

Physically I am doing good today. I’ve been practising my sitting up and haven’t passed out or gotten silly dizzy or anything like that. My pain levels are bearable with medication (I’m trying to take just one tramadol again at the moment). I can transfer to the commode without falling off, which had been rather difficult the last few days. Yay 🙂

I’m very dozy and fuzzy and tired, but I was awake about 28 hours before getting to sleep around midnight/half past midnight. I woke up sometime after 10am so I’ve slept, just need a bit more to catch up with the bit I missed. Staying awake all night and all day happens sometimes so I don’t worry about it, I just try to get plenty of rest when I can sleep again.

Lovely carer is leaving the care agency :'( She is a good friend now so I will still see her, but it means I’m going to have a different main carer. I hope whoever it is is nice and can understand us. I am planning a party for lovely carer on Friday as it’s her last day and we’re her last call 🙂

Vicky was here until yesterday, and it was nice her being here. We spent Sunday night talking until silly o’clock in the morning as we lost track of time 🙂 We used to do that a lot and so it was good.

Johan is currently on my bed next to me, giving me the occasional squish and making me feel safe and happy. It is nice, even if my spoken English is a bit disappeared.

I am sending Johan to the cricket on Sunday. We are now about 25 minutes from Durham Cricket Club, so we have been intending to go since we moved. I’m not well enough yet, but Johan is going to see Durham beat Lancashire (I did put playing against but Johan made me fix it). It is Twenty20 so it’s very fast and only lasts 3 hours. I will see if a sibling can sit with me for it, but if not I should manage if everything is sorted beforehand. I could always try sleeping 😛

I am wanting to go to Leeds. It probably won’t happen this week, but I’m going to build up to it. New wheelchair means it’s just as easy as travelling to South Shields (at least until we reach Leeds train station) and I want to try my mum-in-law’s cooking (I’m not sure if she knows this yet so we should probably tell her :P). Johan’s family are really nice and I feel very at home with them. I think if I plan it well we should manage it okay 🙂

—

I have looked up the travelling to Leeds and if money is okay I should be able to manage it, with travelling with my wheelchair reclined (the Transpennine Express trains have wheelchair users in a separate bit- normally I dislike the segregation but it does mean there’s plenty of space) and a hotel right next to the station. We probably won’t do anything other than see Johan’s family while there, and I can rest lots so it will be good.

As my brain is being silly I’m not really keeping up with Twitter or Facebook, but that is okay. We are thinking of taking another week of respite in August so Johan can go see his friends at this open house thing. My social worker has found a care home so Johan just needs to check it’s suitable. We were originally going to stick with the same one as last time but the travel there is harder for me than travelling to Leeds so not the best idea ever.

Otherwise I’m just playing Bejewelled and Draw Something every so often, reading and immediately forgetting blog posts, and having lots of cuddles in bed. I like being able to have cuddles 🙂 I’m definitely improving, even if only a little bit.

Danni

Unexpected Sleep

Danni, M.E., Penguins!, Physical Disability, Real Life

Yesterday I woke up in the morning not feeling great, so when lovely carer came around we just chatted as I didn’t feel up to being touched. I sent Johan out around lunchtime to go and try and sort his bus pass out (he has an extra ticket on his Key) and then told him to go to Nandos, as he wanted chicken and I like treating him. While he was in Nandos waiting for food we were talking on Google Talk, and then without warning I fell asleep. (Johan also claims he wasted all the rest of the money on razor blades, but since that’s a necessity as I demand he shaves it’s not wasting money at all :P)

I woke up again after midnight, and I’ve been feeling much better since (for me, that is). That sleep may have been unexpected, but it seems to have helped a lot. Going to the prom on Wednesday seems more possible now.

Tomorrow (Monday) is my 26th birthday. I feel weird about it. AYME only support those up to age 25, as after then you’re no longer considered a young person. The friends I’ve made on the forums have been amazing, and helped me so much with coping with this illness. I don’t agree with their stance on a lot of things, but they are very good for helping members get in touch with each other. Luckily I know most of my best friends from there on Facebook and Twitter (from before they banned the sharing of that information) so that helps as I can keep talking to them 🙂

I’ll be joining AYME Graduates as soon as I can get a postal order sent off (WTB a way to pay online :P) and have already received a birthday card from the Graduates SAMs team (SAMs= Severely Affected Members). That made me smile 🙂

For my birthday itself I’m just going to have a friend come around, as dealing with a lot of people will set me back and would mean that I won’t be able to go to the Prom. I want to decorate my bedroom and think if I get some non-birthday specific decorations then I can keep them up to make my room look pretty after my birthday as well 🙂

Johan and lovely carer helped sort out part of my bedroom for me when Johan said they would. This has made my room look better, means I know where more stuff is and as I’ve got penguins on the top shelf of the unit opposite my bed they make me smile every time I see them 😀 There’s still some tidying and sorting to do in here but it can be done in little bits and pieces so that will be good. The bit they’ve already done means there’s more room for Johan to get around the bed when needed without needing to climb over it, and my wheelchair has its own spot.

I got a £10 Amazon voucher from filling in surveys last year, and used it to part pay for a purple snuggie (blanket with sleeves thing). It meant I only paid £5 and it’s awesome. I’m using it in bed for when I’m on my laptop to keep my arms warm, and think it will work well in my wheelchair as well 🙂

I’ve been going on Facebook more often now I use my laptop more (yay overbed table!), mostly to play Bejeweled (I like that game) but also reading people’s statuses. I have to remind myself that most people with ME can do more than I can (I remember that there are people who can do less than I can all the time) but it still upsets me when people post about getting a job or similar with a message like “if you really want it, you can do it”. I really wish that was true as I really wanted to finish my A Level in Computing. I’m just too ill though, and trying to push through it (as those posts suggest doing a lot of the time) is why I’m so ill now.

That’s not to say that people without severe M.E. aren’t ill or anything- I understand that in many ways it can be just as problematic, just the challenges are different. I guess what is happening is I automatically think people with M.E. are at my level or lower, and I need to remind myself that actually I’m pretty severe and that most people aren’t quite as ill as I am with it. (I also have a tendency to think I’m not as ill as I am, because I go out sometimes and mostly tolerate light and stuff, ignoring that I can’t wash or dress myself, or sit up straight, and am in a lot of pain even after painkillers and struggle with everything.)

I know that going to the prom on Wednesday is going to set me back, but I’ve been resting lots, will prepare well (going to take my eye mask, ear defenders, sunglasses to cope with sensory stuff, lie back in my wheelchair so I’m not too upright, and go out of the room as I need to for rests) and luckily most of the people there know me so it should be okay. I’m also going to rest loads afterwards to try and lessen the impact. I do know that someone I follow on Facebook who is a bit more severely affected than me (especially for sensory stuff) is planning on going to the Olympics, so me going to the prom is no more insane than that 😛

I’m going to get there. I’m building up slowly, though stopped doing as much to rest for the prom, but once I’ve recovered from that I’ll work on getting back up. I could be worse 🙂

Danni

Noise is Bad

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

The last couple of days we have had workmen in to sort out our new bathroom. It’s mostly done- the shower has been moved, as has the sink so there’s now more room in there and it will mean it’s easier for a carer to wash me. The toilet has also been moved back, but not quite far enough as when I tried to sit on it, I flopped so far back I nearly fell off and Johan had to rescue me. There’s just the floor to do we think. The new pump is noisy, but nowhere near as loud as the old one and I can cope with it fine with my door shut, and should manage in the shower okay with ear plugs, so that will be good. Johan can cope with it okay without anything 🙂

Johan has contacted the OT about the toilet, and also about the shower seat I’ll need (the closer to horizontal the better) and about a full assessment for things that will help me. I don’t mind buying the stuff I need if necessary (I’ve already bought loads that apparently could have been provided for me) but it would be helpful to know what would help.

I tried the no rinse shampoo. It’s brilliant for in between full washes, and makes my hair a lot cleaner than normal dry shampoo. I also bought some bath in bed wipes which are awesome- they contain moisturiser and one wipe does my entire body, so the pack of 8 for 99p is really good value. Much easier for my carer as well 🙂

I’d had to buy a new shampoo basin as my old one broke (the tube to drain it fell off) and went for the deluxe version instead of the cheapest one like last time. It’s well worth the extra £5 (£19 instead of £14, excluding VAT as I don’t pay it). It has an inbuilt cushion that I can rest my head on so I don’t have to hold it up myself, making it much easier. It feels a lot more robust and my carer said it was easier to wash my hair in it. All good for when I’m bedbound and until I get my shower seat 🙂

I’ve been doing really badly during the day- lots of pain, nausea, fatigue, brain fog, muscle spasms and such, but when night time comes I’m doing much better and can even watch stuff on Netflix. This is a problem as Johan needs to sleep at night, and really I do as well but I want to use my better time.

The workmen being in has been horrible, though I’ve just about coped using a combination of ear plugs, ear defenders and music. The hardest bits were when Johan was out (as I couldn’t block the workmen out completely in case they needed something) and when I had to concentrate on what someone was saying.

The new cleaner came Wednesday lunchtime, but as the workmen were here she couldn’t do anything. She’ll be back next week, as Wednesday will be our regular day. As she’ll be coming 2 hours a week hopefully I can look forward to a nice clean flat 🙂

In the meantime, the untidiness of my bedroom is really getting me down. Since I rarely leave it, and I’m unable to do any tidying myself (if I tried not only would Johan yell at me but I’d make myself really ill) I’m relying on other people, and Johan doesn’t seem to get how much it’s depressing me. He has promised that when lovely carer comes in the morning he’ll do some tidying in here with him. I hope he keeps to that. I know how I want my room to be and it will make it easier for Johan as well as make it more bearable for me.

I got my communication cards and my Media Mount for my Trabasack. The communication cards are awesome- just the right size, and on a keyring so I’ll be able to attach them to my Trabasack. I’m thinking of getting one of those stretchy keyrings to attach it with. The Media Mount uses velcro to stick to the surface of my Trabasack. I’ve only been using it to hold my tablet in place up to now, but it can be used in lots of different ways. I bought one but somehow ended up with two- going to try putting one on top of the other to see how that works 😛

I’m still hoping to get to the prom next week. I’m not well enough right now, but I’m going to rest and rest and rest and see if I can get there. I’ve just ordered a tiara as I really want to wear one, but the estimated delivery date is saying it might arrive afterwards. Not good 🙁 I need Johan to go into the college and sort out my locker, so he can buy the prom tickets at the same time. I thought I had no money left but it turns out I’m doing better than I thought I was- must have doubled up on a bill or something.

Johan picked up our clothes from Asda Wednesday evening. It turns out they’d been delivered to the store on the 6th June (estimated date 8th June) but apart from a note that one item was out of stock, they forgot to send us a text message or email to say they were ready for pick up. I was really brave and phoned up to ask what was happening. The guy on the phone had to ask me to repeat a few things as some of the sentences I was coming out with didn’t make any sense, and I had to ask him to repeat things a few times as I couldn’t hear properly, but I got there in the end. I even arranged a refund for the delivery cost of my trousers as they were supposed to be next day delivery but took three days. Using the phone is slowly getting easier, but it’s still not reliable.

I got a purple tropical sundress, a white long sleeve top (to wear under other tops/dresses when it’s a bit cooler), a pink skirt, and a 2 set bikini. It’s been years since I last had a bikini but I want to try hydrotherapy at some point and my swimming costume will be massive on me now. I’ve also discovered I’m a size 12 now, though I’ve bought a few items in a size 14 they shouldn’t be too loose hopefully.

I also bought Johan two pairs of black jeans, a black t-shirt and some socks as he needs them. Apparently the black jeans are his favourite type, as they feel really soft. That should be good for him 🙂

I’m finally accepting that I’m probably not going improve a lot any time soon. I’ve been mostly bedbound for nearly a year now, having pushed my way through college but damaging my health to do it. I’ve been unable to walk for about 18 months. I’ve reached the point now where I’ve stopped deteriorating, instead I’m bouncing up and down the severe end of the functioning scale.

Even at my best I can’t sit up unsupported for more than a minute or two, can’t hold a pen or cutlery, can’t answer questions for more than a few minutes (thanks, autism), can’t dress myself independently, can’t crawl or self propel my wheelchair, can’t wash myself. I often need to be fed as I can’t manage it myself. If I can get in my wheelchair at all I need it tilted and slightly reclined to be able to manage it. Johan has to help me with most transfers. I lose speech often. I struggle to follow conversations even in text, which is normally my strongest method.

At my worst I have to lie completely flat in a dark, silent room, with no interaction with anyone, and struggle to even roll over, or chew and swallow food. Pain is unbearable and even the smallest thing can be too much. Luckily I’ve only had two relapses that have been that bad, with the one in April not being as bad as the one in December.

I have things I like doing. I like reading Twitter, as I can dip in and out whenever I can and the short tweets are easy to follow. I like reading blog posts- it doesn’t matter if I understand them or not. I wish I could comment more on the blogs I read but that is often too difficult. I play Draw Something and Bejeweled Blitz with/against my friends. I listen to My Little Pony: Friendship is Magic music. I cuddle Penguin and Katie. I stim using my dummies (sucking, smelling, rubbing on my face, fiddling between my fingers). I chat to Johan or lovely carer. When I can I like going into the living room and watching television or playing World of Warcraft. I go out in my wheelchair.

Accepting that I’m probably going to be at this level for a while means I can adapt. I’m asking the OT for more equipment to help me manage. I can try and make goals that I can accomplish at this level. I can look into activities that I can do now, rather than ones that require me to have better control over my hands. I can try and stop overdoing it with things that don’t matter (Johan is trying to help with this).

The interaction between M.E. and autism makes life interesting. Not being able to have short bursts of activity with rests in between as I struggle with transitions, instead I have longer periods of activity with longer rests, which isn’t as good but works better for me. Not being able to hold things properly, I hook stuff around my hand or finger instead, or use my arms to hold things. Accepting that I just “phase out” of conversations and that everyone who talks to me is either aware of this or has it explained to them when it happens. Laughing about stuff. Celebrating everything I can do. Taking joy out of small things like colour changing light and penguins. I’m still happy.

Edit: Realised this blog post didn’t have a name. That is wrong so I’ve fixed 😛