Author: Danni

The Purple Penguin! 31 year old autistic geek, living in bed with severe ME (myalgic encephalomyelitis). Likes gaming, purple and penguins.
Danni

Penguins and Pyjamas and Sofas

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

As it’s the early hours of the morning, it is normal Danni blogging time. I am not entirely sure why I blog at this time, but it may be because I’m slightly bored and Johan is asleep.

Later today there is a Mad Up happening in London. I am not well enough yet to go, but I am sending Johan and he’s taking Erica (one of my penguins) on my behalf. There will be lots of friends there and I’m hoping if Johan can get a signal to say hello over Google Talk. My brother Martin is coming to look after me, and is staying overnight. I’m happy I can manage the commode by myself now or Johan wouldn’t be able to go (I feel a bit uncomfortable with my brother providing that sort of personal care).

I bought an iPhone 4S. I feel kind of bad about it as I thought I should never buy an Apple product, but it’s nice. It just works, and there are better, more polished apps for it than for Android, especially communication ones. I have yet to decide what communication app to go for- the best is Proloquo2Go but that’s nearly $200 and I’d need to save for that. There may be others that are suitable that are more in my price range but I’ll have to do some research.

I’ve not been out again since Sunday. I got some mild payback (extra tiredness and pain) but nothing too serious from it, then on Wednesday (I think) I had tramadol withdrawal symptoms as I’d forgotten to take any for over 24 hours. As I’ve been pretty reliant on it since my December relapse, my body did not like suddenly going without. I felt really ill, had a lot of pain, sweating, and was nauseous to the point of heaving. I took a tramadol and a cyclizine to deal with the nausea, and fell asleep for the day. Since then I’ve been really out of it, which is noticeable to Johan. Chatting and concentrating are much harder than it was at the beginning of the week, and they weren’t exactly easy then. Hopefully it’ll ease off soon.

Good news: we’ve found a GP surgery, and so far they’ve been awesome. They let Johan sign registration forms on my behalf (even signing things is very painful for me at the moment), made an appointment with the GP for me for medication before I’d been to the registration appointment with the nurse, and didn’t ask for loads of ID like the last surgery did. I was meant to go to the GP yesterday (Friday) morning for my meds (I was out of tramadol completely), but getting ready made me too ill to actually go. Johan phoned the surgery to ask if he could attend on my behalf, they agreed, and so he did so.

The GP he saw was brilliant. From what Johan has said she seemed to understand M.E. pretty well, asked if I’d been diagnosed by Dr. S, my consultant, and was quite happy to prescribe 100 tramadol and 1 litre of ibuprofen liquid for me (he didn’t ask for any amount). When Johan explained our fears of getting a GP who thought that M.E. was all in the head or would want me to go for CBT or GET she said something along the lines of that although they don’t know what causes it or how to fix it, they’ll just do what they can to help manage it. That’s exactly what I want and need from a GP, and she even mentioned that 100 tramadol would last me 12.5 days 😛 (that is how long it would last if I took the maximum dose constantly- at the moment it normally lasts me around a month). She did say she’s not there all the time so we probably won’t see her much, but if the others in the surgery are even half as good we’ll be happy. I can’t believe how lucky I am with doctors.

I was also meant to see the nurse for the registration appointment in the afternoon, but Johan rearranged that for next Tuesday. He still went to his though, and from what I gather the nurse was really nice, to the point where his pulse and blood pressure were perfect. This means he wasn’t that anxious- he said that she spoke to him in a way that relaxed him. I do know that when he came home he wasn’t anxious, which is very unusual for him (especially having been to the doctors). He said it feels more like a community surgery than the other one we tried, and it also has the advantage of being the closest one according to the NHS website (which wasn’t working when we first looked, or we’d have known about it earlier).

I have a new GP appointment in a couple of weeks, as I have a couple of things I want to discuss in person and it will mean they have a better idea of who they’re dealing with. Both the nurse appointment and the new GP appointment are in the afternoon, which should mean I’ll be able to get there, as even when I’ve not been up all night I’m useless in the morning.

Other stuff… I got a pink Curve Connect Trabasack 😀 I loved my normal black one, but since I’m so clumsy now we were thinking of getting me a connect one (you can use velcro on it to hold things on) and Johan wanted a normal one because he broke the old one. So he’s got my old black one and I’ve got the nice new pink one. I’ve not attached anything to it yet as got to figure out which velcro to use for what (there are two different ones, one is more secure/harder to pull off than the other) but I’ll be putting some on the back of my tablet to secure it to it, with something to cover the velcro for when I’m not using it. I was thinking a cloth but now I’m thinking I could make a sign or something and attach that to the velcro 😀 While in Taybarns on Sunday I was able to use the black Trabasack to put my plate on while Johan was pushing me around so I was able to go up to the food counters myself and choose exactly what I wanted to eat, instead of having to send Johan to guess like we used to do. It was also steady enough to put our drinks glasses on while he was pushing me. Johan is taking the black one to London to hold all his techy stuff. This time he is not going to try and carry all his clothes and toiletries in there as well (which is what completely broke the old broken one) but is taking a backpack as well.

I’ve also ordered a wheelchair cushion and a cutlery handle thing to try and make things a bit easier for me. They’ve yet to arrive.

I watched some proper telly last night for the first time in a bit, just lying on the sofa. Supernanny US, Have I Got News for You, some Graham Norton and Matt Lucas as they were on. Nothing that requires any real concentration (like The Big Bang Theory- I’ve had to give up on that for now :'( ) but it was good to do. I’m also wearing my favourite pink penguin pyjamas which were clean out of the dryer so I’m happy 🙂 Overall I’m not doing brilliant but I’m happy enough 🙂

Danni

I’m Lucky

Danni, Important Stuff, M.E., Physical Disability, Real Life

I’m very lucky.

Since I got M.E, I’ve never had anyone important disbelieve I’m physically ill. Johan, my old GP, consultant, old psychiatrist, the CFS clinic people, social services, my friends and even the ATOS doctor assessing me for DLA have all accepted that yes, I am as ill as I say I am, it is a physical illness and they try to do what they can to help me to deal with it and improve. From my friends and reading stuff on the internet, this seems to be unusual, and that’s wrong. I’ve even been treated well in two different A+E clinics- the Queen Elizabeth had a doctor troubleshooting what to do about my bad reaction to morphine (abdominal spasms- she gave me buscopam which helped) and the RVI had to pick me off the floor with a hoist but were very nice to me while doing so (in that case I’d just been sat up too long at an outpatient appointment and my body protested by jerking- I was fine to go home after lying down on the floor/trolley for a bit).

I’ve experienced very severe M.E (no voluntary movement, inability to communicate, Johan’s breathing making me feel deathly ill, going in and out of consciousness, being in so much pain I kept passing out) but was lucky that the worst of it only lasted a few days, and overall the relapse only lasted a month or so. Since then I’ve been gradually improving in every area but cognitive and am now roughly back to where I was early October, before the chain of events that caused my massive relapse and made me housebound and then bedbound. That it only took 6 months to get back to being able to go out somewhat reliably is something I’m very grateful for.

When the CFS clinic people (I need to think of a shorter description for them, oh well :P) came out a couple of weeks ago they were great, apart from the appointment giving me payback 😛 They’re fine with me not following any formal treatment plan at the moment (they normally do graded activity therapy, which is customised to the patient) as my listening to my body and slowly pushing it when I feel ready is working, and they accept that. They gave me a couple of suggestions on ways to build up the muscles in my back so I can hopefully support myself when sitting up again, and helped me with my leg problem, and they’ll come back out in May. That they are willing to do home visits and were willing to help me when I was severely affected (when we asked them for the home appointment I was still completely bedbound) is also unusual from what I’ve read. Yes the appointment was exhausting and I got payback, but it was useful and I feel better knowing that if I need to, I can contact them for help.

Apart from currently having no GP (something we’re hoping to fix after the bank holiday- the first GP surgery didn’t want to take me on as I was housebound at that point and although I’m not now I don’t trust them if I were to become so again) I feel pretty well supported. We need to make another appointment with my consultant now that I’m able to travel again, helped by the fact I’m now a lot closer to the hospital. When I see him I want to ask about suggestions on things to help my spasms, especially the ones that last for hours and stop me sleeping. My old GP was a bit uncomfortable prescribing anything for them before I saw the consultant, which is fair enough (he was happy to help with all the other problems I had).

Moving to the new flat has also helped so much. Despite not being able to use the toilet or shower (roll on May when they fix it for us) now I am able to sit in my wheelchair Johan is able to get me outside and down the ramp, despite the front door trying to kill him or me every time (it is heavy, and automatically shuts). If I were still at the old flat, I’d still be housebound because of the stairs. Having the freedom to go out again is making things so worth it for me, especially since I’m not experiencing any major payback up to now. I went to Taybarns in South Shields for Easter dinner last night and managed pretty okay, though we’ve worked out I need a wheelchair cushion. That was half an hour each way, plus an hour there so was out around 2 hours (actually, longer than that as I popped into the local shop on the way back and there was a wait for the Metro- make that 2 1/2 hours). I was okay other than a sore back and bum, which hopefully a cushion will help.

I’m also lucky in that I have reliable public transport. All the buses I use in the area are wheelchair accessible, and if they ever aren’t the bus company will call me a taxi (something that has been offered to use several times before when ramps have been broken, though we’ve declined and waited for the next bus as it was easier for us). I have a free bus pass with companion card that works for all of Tyne and Wear, County Durham and Northumberland (and there are accessible buses to most of those places). The Metro is very accessible so long as the lifts haven’t broken down, and if they have there’s normally an alternative route. It’s not perfect (my wheelchair slides a bit on the bus and Johan has to keep hold of it sometimes) but I’ve never experienced the problems that others have with bus drivers not stopping or being unwilling to put the ramp down or not asking pushchairs to move from the wheelchair space. In fact, it’s often us who say we’ll get the next bus if there’s a lot of prams or similar (despite the driver and passengers being willing), as where I live now there are buses around every 5 minutes and by the time prams are folded and I’m in place the next bus will have arrived, and there’s no point inconveniencing other people if it’s not necessary. Trains are a bit more hit and miss in that I’ve been forgotten when I’ve booked assistance before, but luckily Johan was able to find someone so I didn’t have to be carried off (I’d be unable to crawl).

I’m getting there. Johan was worried about my DLA until I reminded him that I was attending college and doing a lot more for myself back when the ATOS doctor assessed me, so I don’t need to report my improvement until I get better than I was then (which was around May last year). I’d love to be able to reduce my DLA level as being on high care, high mobility is depressing, as it’s hard to accept needing that much help. Until I can manage the nights without needing Johan (though he doesn’t always wake up when called) and can look after myself well enough not to need near 24 hour care and supervision, or I’m able to walk properly again, I’m on the right rates. The money does help a lot- being able to just buy a new wheelchair cushion as I need one now, paying more for takeaways as Johan is struggling enough with caring for me to add cooking on top (note to self: need to book the electrician to fit the cooker), knowing I always have enough money for a taxi if I need to get home urgently when out and about, being able to buy things for the flat which we only need because of my disability, paying towards the respite care where I go into a care home three times a year so Johan can have a break- all stuff that means I (and to some extent Johan) have as decent quality of life as is possible. We’re not rich but we’re not having to worry about money, and that makes things so much easier.

I am still very disabled. I can’t get anywhere by myself, as I can’t walk or self propel my wheelchair. I need a harness to hold me in a seated position in my wheelchair as otherwise I flop forwards. I need Johan to cut my food up for me. I need Johan to wash me and help me dress. I need him to help me with my medication and with my wheat bags to help me manage my pain. I need him to read my letters for me and help me understand things. My speech is unreliable. But I could (and have been) worse. And the fact I’m believed makes everything that much easier. It should be the case for everyone, and it makes me angry that it’s not.

Danni

I’d Like To Be A Tree

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

Danni in TGI Fridays

I’ve been out a few times in the last three weeks, and I’ve been further each time. On Monday I went into Gateshead to change my address with the bank, and also looked around the shops and bought a few items, including some long stripey socks 🙂 On Wednesday I was feeling really well for me (no payback!) so we went into Newcastle, looked around some shops (hunting for some Pony hair accessories, but we went into the wrong H&M and the right one was closed a couple of hours early) and then went to get some food at TGI Fridays in the Gate. It was brilliant, especially since I got to go on the Metro on the way home and see all the bridges lit up 😀

In my last post (if you could understand it :P) I complained that I couldn’t sit upright as I was too floppy, but otherwise was well enough to do stuff. We discovered that if we tied me upright in my wheelchair, I could go out 🙂 The first time we used a scarf, then when that worked we bought a proper torso harness which does an even better job. Because I no longer have to put all my energy into remaining upright, being outside, travelling and stuff is doable.

I’m loving how much I’ve improved in the last few weeks. I can go on my computer for as long as I want (was 7 hours yesterday, which may have been a bit too long as my bottom was very sore by the end of it :P).I can cope with noise and light even better than Johan a lot of the time. I’ve been able to reduce my painkillers as pain is mostly at a bearable level now and I can use distractions such as computer games to deal with it. I’ve gotten out of bed every day for a few weeks now I think. I can watch some television.

There are a couple of things that are frustrating me though. The first is that cognitively, I’m still not doing great. Conversations, reading lots of text, remembering things, concentrating on stuff- all are now more difficult than going outside. I got frustrated while in Newcastle because I wasn’t able to direct Johan where I wanted to go. The CFS clinic people came out a week and a bit ago, and the half hour conversation (with me lying in bed) absolutely exhausted me, and I got payback from it. Johan talks to me but half the time I don’t know what about, or don’t hear him because I wasn’t able to concentrate on what he said. I can’t keep up with Facebook and even struggle with Twitter. It’s frustrating as I feel like I’m not aware of what is going on because it requires more brain power than I seem to have. I even suck at playing World of Warcraft, and other people are noticing that I’m making stupid mistakes or losing concentration.

The second is that I still can’t care for myself. My hands are stupid- I can’t reliably hold things as they either cramp and spasm or they just drop things. This means I can’t wash myself, get dressed by myself, use cutlery properly, hold a cup most of the time, write, or do anything else that requires the ability to hold things reliably. I’m also really weak so repetitive movements such as those required to feed myself (holding things in my hands is easier than cutlery, though I still drop stuff) exhausts me to the point where Johan still has to take over at times. There’s a part of me that’s saying what’s the point in being able to go out if I can’t even look after myself.

Earlier I was on the computer playing World of Warcraft, doing Raid Finder with some guildies. Johan went to the shop to get some fish and chips (compulsory on Good Friday) and I was eating them when suddenly my body decided it had enough and I almost fainted. Johan got me on the sofa and I spent about 15 minutes struggling to stay conscious while my body jerked and spasmed, then it stopped and I was “okay” again, apart from being extra tired. It was as if it was saying no to sitting upright (not wearing the harness as the seat reclines and that’s normally enough for me), eating and concentrating at the same time. We initially thought it might be payback from Wednesday but as I recovered so quickly that didn’t seem to be the case. Was odd, but it’s not the first time my body has suddenly protested like that.

I want to read and comment on blogs more but that’s too much for my brain. In the meantime, this is the song I’ve been listening to lots (which is the inspiration for the post title) 🙂

Danni

My Little Pony: Friendship is Magic

Danni, M.E., My Little Pony: Friendship is Magic, Physical Disability, Real Life, World of Warcraft

Ponies are good. Ponies show is very good for Danni as not too hard to understand and cheerful and cute and fun. Johan also likes Ponies but says he is not a Brony, even though all a Brony is is a man who likes Ponies.

Danni frustrated at inability to sit up straight, when can do everything else properly. Danni also frustrated at silly amount of floppiness.

Danni shower be fixed, probably in May. This because the shower fixing people are being changed over the next few months. Danni toilet also be fixed, which means a new floor. Have been told this will be blue. Will need a full assessment for shower chair because cannot use a standard one because of silly floppiness and not being able to sit up straight.

Danni play lots of World of Warcraft when on computer. Danni die a lot because no concentrate, and Danni need a new mouse as Danni mouse double clicking when single click. Danni brain is also brokened. Danni want Johan to wake up but Johan went to sleep at 5am so it is too early to wake him up. Danni hungry and want some food. Danni frustrated that Danni can’t get food by herself, and needs Johan to do it for her. Danni decided she doesn’t like M.E. at all because it makes her like a baby crossed with an old person who is silly floppy and unable to do things properly.

Danni

Improvement

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

My health is improving. This is good 🙂

I went outside for 5 minutes on Thursday, as it was International Wheelchair Day and I wanted to use my wheelchair. It was amazing being able to go out there, though I’m paying for it now.

I’m still struggling cognitively. Things that should be easy for me to do are not. Writing to people is beyond me at the moment. I am having to ask Johan to do so for me, and he’s already got a lot on his plate.

Overall though, I’m not too bad. I can sit in my computer chair for as long as I want – normally about an hour (though sitting in my wheelchair, on the toilet or commode makes me feel very ill in about 5 minutes). I can normally watch telly or YouTube videos, though I don’t always understand the content. I can wear my normal glasses all the time, instead of needing my sunglasses indoors. I even made plans to maybe go to the doctors surgery at some point in the near future, but my outing to the ramp outside made me realise I’m not going to manage that right now, at least not in my current wheelchair.

My sleep is bad. I’m waking up around 8pm, and going to sleep around 10am. I’m sleeping fine once I get there, so I don’t need anything to sleep as such, but I’m considering melatonin or something to help me to get to sleep at a more reasonable time. I can’t even blame my M.E. too much for this one, as although painsominia is normally the cause of it going completely wonky, I’ve always had difficulty sleeping at normal times from when I was a kid, which is probably due to autism.

Pain is an issue, but my painkillers work most of the time which I’m grateful for. I can’t manage without them though, which is annoying as I did for so long, but I have to remember that despite my recent improvements I still technically have severe M.E. as sitting up for an hour a day, although great, is still not that much in the grand scheme of things, especially when you can only manage it in a supportive reclining computer chair, and can only manage 5 minutes in a wheelchair or a normal chair 😛

I can stand up a little bit, long enough for transfers and sometimes long enough to adjust clothing after using toilet or commode, which makes things much easier. I have discovered though that I can’t straighten my left leg properly. This is fixable, but I’ll probably need physiotherapy to do it. My legs can now hold me up, so long as I don’t try to move them 😛

I have been making plans. Immediate ones relate to what we’re going to buy, starting with a new cooker. Johan wants a gas one. Also on the list are paint and flooring, a travel mug for me so I can have hot drinks safely (looking at one that is self sealing and you push a button to be able to drink from it- looks cool and is probably the safest for the Danni). Other things on the list are a new laptop for me, and a recliner that massages and has a heat area. Some of the items are more of a wish at the moment, but the idea is that I save up for everything on there so I can have them eventually, even if it takes a long time.

More long term plans relate to me getting much better. I want to go out to Newcastle to Barcraft at some point (Barcraft is watching Starcraft 2 tournaments in a bar in a similar way to football). That requires me being able to cope with lots of sensory input, and sitting up, and possibly getting upstairs. Before that I want to go to the Linux User Group again. That one will be doable as soon as I’m well enough to travel and sit for long enough, as there’s not as much sensory input. I also want to travel a bit further- I’ve never been to Holy Island, and I want to take Johan to Walsingham.

The ultimate goal is being able to do Student Cross. That involves walking for around 120 miles, at times carrying a heavy cross, across part of the country to Walsingham. It takes a week, and you finish up for Easter. As I would have struggled with that before I got M.E. that is a goal that is reserved for when I recover completely, which I’m still hoping will happen. I just don’t know how long it will take.

In the meantime, I’m spending my time watching rubbish telly, watching YouTube videos, and messing around on the internet. I wish I had the ability to understand things the way I used to be able to, as I read stuff and it makes no sense. What’s weird is that this morning I can type all this but it’s like a stream of consciousness, and I can barely read it because of my double vision. I apologise for any mistakes because of this.

I’m getting there. M.E. is a bitch but I’m going to beat it. In the meantime, I’m not going to let it get me down. I’m still cheerful and I still have the amazing Johan and my penguins, so I’m happy 🙂