Category: M.E.

Danni

1 Penguin, 2 Penguins, 3 Penguins, 4, Purple Penguins, Sparkly Penguins, Flappy Penguins, More.

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

Title has nothing to do with anything other than my love for penguins.

My sleep is still all over the place, but I’m mostly in hypersomnia mode. Having long naps on top of long sleeps. This is good as it is what my body needs to do to get over the relapse- every sleep is another step towards being just that bit better.

I am frustrated as pain levels are still higher than normal so I’m still taking double tramadol. The double tramadol is working fine so I should be happy about that, but it’s just a reminder that I’m still doing worse than I was a few weeks ago. Also when I take two tramadol I feel all woozy and dopey and sleepy, which doesn’t happen when I only have one, so there is that to think about as well. My current pain levels though require it.

Johan is regularly brushing my hair for me. This is nice and good- something simple that makes my life more pleasant and also lets me be close to him. It’s also letting me practice sitting up unsupported- my back muscles are very weak so sitting on the bed with Johan behind me is a safe way for me to do so without worrying I’m going to collapse and hurt myself. Luckily I’ve not even come close yet 🙂

Yesterday I managed my computer for a bit (probably too long) and went into World of Warcraft and did all the orphan quests on Danni. I now have all the pets (including the new ones from last year) and some pet biscuits from the Northrend one 🙂 If I get the chance I’d like to do them on Tiarna as well (which will be quicker as she’s a Mage) but it’s not essential. I also did our monthly budget for May so I know where we stand money-wise. Things are a little tighter than I’d like this month (a few one-off things that are coming out) but we still have enough slack in the budget for anything I’ve forgotten or any emergencies and stuff- which is good as I have a feeling the World of Warcraft subscriptions may be coming out. I will have to check now 😛

Just checked my account- mine is coming out 22nd May and I think Johan’s is only a couple of weeks after, so I will need to add them to the budget. Not a problem though as I can afford them, but I won’t be buying the Collector’s Edition of Diablo 3. That is a shame, but I’m getting it for free with the WoW Annual Pass so it will only be the extras I’ll miss out on (I can technically still afford it but I’d rather keep the money for emergencies).

Also yesterday I bought a new pair of trousers. Since I lost loads of weight the only trousers I’ve been wearing are leggings (and a pair of too-short tracksuit bottoms inside), and the ones in my size that I’d bought by mistake ages ago are too scratchy for me to wear now (touch sensitivity is worse with the M.E so I can’t tolerate many textures, including jeans). The new trousers are a linen/cotton blend, which I normally tolerate rather well, and are purple 😀 They’re in the long size which is important as I have silly long legs (36″ inside leg when standing) and trousers appear even shorter when sitting down. I may show some sock but that’s okay as I have some really cool ones- rainbow ones or purple ones or penguin ones 😀 It will be nice to wear a pair of trousers again, as although I love my leggings and skirts sometimes I want to wear something different.

Apart from that I’ve mostly just been on the internet. A little bit of Twitter, catching up on blog posts in my reader, and in a bit I’m going to read more of the Blogging Against Disablism Day posts. I’ve also had lots of cuddles and handholds with Johan (I can cuddle a bit again! Yay!) which is really nice.

As I spend so much time lying down, I do a lot of thinking. Some of this isn’t important, some of it is stuff like ideas for future blog posts (I have lots of ideas, just not the spoons to write them yet as they need a bit of research), and some of it is reflecting on things I read. For Blogging Against Disablism Day Ballastexistenz wrote two blog posts about caregiver abuse, which made me think a lot. I’ve been lucky to only be on the receiving end of the milder types of abuse (mostly neglect and refusal to take my wants and needs into consideration) though obviously that’s bad enough. The main thing I’ve been thinking about though was about the power imbalance between the carer and the person being cared for.

What is interesting is that I don’t feel there’s much of a imbalance in power between me and Johan. Yes, he’s physically a lot more capable than me and if he wanted he could use that against me, but when it comes to everyday life I feel equal to him. Some of this is because I do as much as I can- I manage most of the finances (Johan discusses them with me, and we come to decisions together most of the time, but the money goes into my account and I sort out where it’s going each month), I normally do most of the shopping order, and I keep track of what needs to be done and when. The other reason is that I know that Johan won’t ever deliberately harm me (I know he’s capable of it, but I also know he’d never forgive himself if he were too- he’s terrified of hurting me and I have to reassure him he won’t a lot of the time) so I feel safe with him. This means that it’s easier to accept him doing things for me, including very personal tasks involving washing and stuff. He always takes what I want into consideration, and I also care for him while he cares for me, in that I help him with the things he struggles with and try and help him with his mental health. I’d love to be able to do more, but with my M.E this bad that’s not possible at the moment. We also both spend about half the day telling and showing each other how much we love each other, which is always a plus 🙂

I think that’s one of the advantages of both of us being autistic. We’re very open and honest with each other, and we’ll talk about things (even if Johan does have to remind me not to talk too long as it makes me ill). If anything were to bother me with how he’s looking after me (or anything else, for that matter) I can and do talk to him about it, and if he’s able to change things he will. It’s the same for him- he’ll tell me if I’m doing something that bothers him, and if I can I’ll try and change it so it doesn’t anymore 🙂 I also have friends I can talk to if I ever want to talk to someone else about things, and I’m trying to encourage Johan to find his own support to help him cope with things (probably with the Carer’s Association, as it’s close by now). We both acknowledge that we need time alone sometimes, and even if it can’t happen physically then we can manage it by being in separate rooms and doing different things. As Johan respects my needs, I try to respect his as well. It’s also why respite and breaks are so important- it gives Johan a chance to charge his batteries, and it can help me as well.

I want to go to Edinburgh on holiday this year. Johan is also happy with this idea, so long as I’m well enough (I’m not currently, but I’m hopeful I will be in a few months). It’s harder to do a cheap break away now that I can’t walk at all so everything needs to be wheelchair accessible and things, but I’m very good at finding cheap train fares and cheap places to stay (I normally find Johan’s, and my siblings tend to come to me as well) so I’m sure we can manage it even on a tight budget. The main reason I want to go to Edinburgh is the penguins- there are so many at the zoo and it’s perfect for Danni’s. I also want Johan to do something he enjoys while we are there- not sure exactly what but I’m sure he’ll be able to find something (there’s a really cool museum we went to last time that may be good to go to again if I’m well enough). If I’m not well enough for it this year then there’s always next year.

The other places I want to go are London to the Mad Up in June (although that’s not looking very likely at this stage for me, Johan might be able to make it again though) and Leeds to see Johan’s family. I’m sure someone will look at this and think that we get far too much in disability benefits, yet most of it is because of money management and the fact we live very cheaply. Neither of us drink most than very occasionally, neither of us smoke, when I am well enough to go out we tend to go to rather cheap places and the only nights out Johan does are Barcraft, which since he doesn’t drink much works out very cheaply. I’ve said before that I feel rich on the amount of money we get in, though when compared to what we’d get if both of us were working it’s not very much at all.

Of course being stuck in bed most of the time means that now I have most of the equipment and things I need there’s less for me to spend my DLA on (other than the things like extra heating and a higher food bill as what I’m able to eat is changeable), but as soon as I become more mobile the costs will go back up again. If someone could cure my M.E tomorrow I’d grab it with both hands, and happy look for a job as there’s nothing I want more than to be able to work. It’s frustrating as I saw the perfect job for me advertised- working from home data entry, around 40 hours a week. Pay was a little more than minimum wage. And I’m not well enough to do it- if there was even the slimmest possibility that I could have managed it I would have applied immediately, but I’m just too ill. I don’t want to be on benefits but I’m grateful they’re there.

Since I’ve upset myself now thinking about all the scrounger rhetoric and stuff (I really need to stop internalising it) I think I’ll go watch some penguin cam – that always cheers me up 🙂

Danni

Being Accessible Doesn’t Just Mean Ramps – Blogging Against Disablism Day

Autism, Blogging Against Disablism Day, Computers, Danni, Important Stuff, M.E., Mental Health, Physical Disability, Real Life

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I believe this is the first year I’ve actively participated in Blogging Against Disablism Day. I wasn’t sure I’d be participating this year either, but I’m well enough to write a blog post so am doing so 🙂

I have more than one disability. I have severe M.E, which is the most obvious one as it means I can’t walk so use a wheelchair when I’m able to get out of bed. I am autistic, dyspraxic (considered part of autism) and have anxiety, which is mostly related to autism. I also have a history of severe depression and other mental health issues, which luckily I have recovered from.

When most people think of making things accessible, they think of ramps and lifts. Ramps and lifts are awesome things and I wouldn’t be able to do as much as I can without them. It’s brilliant that more and more buildings and services are becoming accessible to those with mobility problems, though there are still places that need a lot of work. The thing is, mobility problems aren’t the only types of disability. For me, the autism, dyspraxia and anxiety, and previously depression also are disabilities, which I require help with and mean I have different access needs. Of course, other people with different disabilities such as sight or hearing impairments, learning disabilities and such will also have access needs that need to be taken into consideration, but a lot of the time these are overlooked as people automatically think of wheelchairs.

One of the biggest areas of difficulty I’ve had related to accessibility is regarding being able to access services without using a telephone. I have auditory processing difficulties that make hearing someone on the telephone very difficult, especially if the other person is in a busy place, a call centre or the line is bad. I find it difficult to know what to say on the telephone, especially if I’m unable to predict what the other person is going to say. I also have periods of time when I completely lose speech, and have no way of knowing when I’ll be able to speak reliably again. Add on to that anxiety, and using the telephone is an exceptionally difficult task that I try to avoid if at all possible. When I also had depression and for a while afterwards it was just impossible. (The M.E also makes it difficult as conversations are very energy draining without adding on the extra issues, but I’m going to ignore that for now.) To add to things, Johan also has similar difficulties, though in most cases he finds it a little easier than I do.

Now, difficulty using the telephone is relatively common among those with mental health problems, as well as for autistic people. Despite this, one of the hardest services to access without using the telephone is mental health services. Crisis care here is accessed by telephone, a lot of the time appointments are made or changed via telephone, contacting social workers or CPNs is done by telephone. When I was last in contact with mental health services about 18 months ago it was still impossible to use email as a substitute, and when Johan was in contact with them more recently he was also not given an email address, but just a telephone number. If you needed to speak to your social worker urgently and couldn’t use the telephone, it was a matter of tough- either you get someone else to do it for you or go without. Letters can take a couple of days to get to the recipient (ignoring issues of being able to get out to post it) which may be too long in a crisis. Of course, deaf people will also have this problem, so it’s also discriminating against them.

Some areas of the NHS and social services are embracing new technology to enable more accessibility. I communicate with my (physical disability) social worker by email, as I do the OT who is arranging adapting my flat and a few other people. In a lot of doctors surgeries it’s now possible to arrange appointments and order repeat prescriptions online, as well as by telephone and by going into the surgery itself, and more are signing up to that as time passes. Unfortunately there are still a lot of organisations and services though that assume everyone either has the ability to use the telephone themselves or has someone willing to do it for them. I’ve had to send angry complaints to a few companies who insisted that they could only do certain things by telephone (in most of those cases, when I told them they were being discriminatory an alternative method was suddenly found, often meaning an email address).

I’m aware I’ve concentrated on one very specific area where things aren’t as accessible as they easily could be (a lot of the places such as mental health services are already using email internally, so providing an email address for clients who need it wouldn’t be difficult to organise). This is just an example though- there are lots of other areas where services could make things more accessible to more people that they probably don’t think about. I wanted to think of more examples but my brain is too foggy now, so I think I will leave it there. I suggest you go to the main Blogging Against Disablism Day 2012 page and read the other blogs on there 🙂

Danni

Blog Updated

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

I think I’ve sorted how I want the blog to look, for now anyway. Eventually I want to have a header image, but until then I’m happy with how it looks now. I’ve updated a couple of the pages, changed the theme (the new one, Suffusion, is very customisable), updated my links and otherwise done some general housecleaning. If you think I’ve forgotten an important link, please let me know.

Otherwise, I am clean! Yesterday (Monday) morning Johan washed my hair and gave me a bed bath, then I got into a clean nightie. It has made me feel so much better and more human. I slept all day again (I need to fix my sleeping pattern but it’s not massively urgent yet) and when I woke up Johan brushed my hair for me so it’s all nice and smooth. Since then I’ve been working on getting my blog sorted.

Still not really well enough to get out of bed, but I’m sitting up in it a bit more now. For the rest of the night (until I fall asleep) I’ll probably be on twitter and reading blogs. I read a lot more blogs than those in my links (I have over 100 on my reader) so that’ll keep me entertained. If I run out of blog posts to catch up on, I have 27 links in my Read It Later/Pocket thing so they will keep me going. In the worst case scenario, there’s always TV Tropes 😛

Tomorrow I plan to have sausages (cider and apple) and Thai rice for tea (I likes them :P). Having a meal planned out before we’ve even slept yet is very unusual, but the sausages are in the freezer so need defrosting first (well were- Johan’s put them in the fridge now).

I bought a new tube for my Hydrant when I got my wheelchair cushion, and it’s got a different type of valve to it. Took us ages to figure out how to use it, but now we have I like it because it locks so doesn’t leak. Means Katie won’t have juice all over her in the middle of the night again 😛

Johan was very productive while I was asleep. Posted a parcel, bought some snacks from the cheap shop, went into Newcastle and spoke to the bank, and still managed to fit in playing some Eve 😛 Since I woke up he’s been chatting to me (and brushing my hair as mentioned earlier), watched some Torchwood, sorted me out (painkillers, food, drink, commode) and now is off to bed as he’s been up too long. He seems happier than he was so that makes me happy 🙂

Danni

I Want a Bath

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

I think I’m over the worst of the relapse. It never got as bad as in December, in that for some of the day at least I could tolerate small amounts of sound and some light with sunglasses on, and never stopped drinking, but I still was very ill and my arch nemesis the bed pan was brought back into action when trying to use the commode made me much worse.

There are some residual effects. Because I was moving much less than is normal for me (not that I move much anyway, but during the relapse I was only moving every 3-4 hours to adjust position as that was all I could manage) I got severe constipation. When I started moving again, so did my digestive system and the pain involved was immense, as it aggravated my hemorrhoids and I think I may have torn the skin as well. Luckily we had some Orajel in and that helped (I checked online that it was okay to be used that way). I think for next time I’m going to ask the doctor for some laxatives to be taken during a relapse so it never gets to that point (it was the same after the December relapse). Johan went to my doctors appointment on Friday and the doctor is going to ask the CFS Clinic about stronger painkillers for relapses, as I can’t have oramorph and tramadol just isn’t strong enough (for my normal levels of pain tramadol is my wonder drug- takes the edge off it so I’m able to do stuff and concentrate on things other than pain).

I’m still not great. On Friday evening I was able to go on my computer for a bit so played World of Warcraft, which made me very happy 😀 Unfortunately since then I’ve been stuck in bed again, as just been really weak and bleh. Luckily double tramadol is enough for my pain now so that is good. My sleep is also all over the place so that’s making things awkward for Johan.

The biggest thing I want now is a bath. Of course, at this new flat we don’t have one, and there’s still another 5 weeks to go until the shower is usable. I haven’t had a proper wash for nearly 3 weeks now, and my hair is also very greasy. I’ve been meaning to have one since Friday (which was the first day I was well enough to be able to tolerate one) but with me sleeping all day and Johan having brain explosions we’ve not got around to it yet.

Having a wash for most people isn’t a big task, but for me it’s one of the harder things to do. It’s one of the areas that autism and dyspraxia makes things harder than it would be if I only had M.E. Because I’m touch sensitive, being washed is very overwhelming, so I can only do it lying down (that’s been the case for about a year now, even when I was able to go out and about). Luckily my smell sensitivity isn’t as bad as it can be, so I when I am washed I use some things with nice smells, such as my cherry almond shampoo (reminds me of bakewell tart) and coconut body wash. When we had a bath I used to lie down in it using the reclining bath seat, have my hair washed (either by a carer before we sacked them or by Johan) then I’d soak in the water to clean most of me, using body wash on my face and selected other areas. As I wasn’t trying to wash everywhere directly, I was able to do the washing my body bit myself most of the time which gave me some independence.

Now we don’t have a bath, I have to wash in bed (there’s nowhere in the bathroom for me to lie down yet). We have a bed shampoo thing, so Johan washes my hair in that and tries not to knock the bucket over and soak everything on my floor 😛 After he’s washed my hair (I’m currently using a 2 in 1 shampoo and conditioner to make things easier) he washes my body. I normally do my face but the effort of that is normally me completely exhausted, so Johan washes the rest of my body. Some days I’m not well enough for all of it to be done, so he concentrates on the smelliest areas. Then I rest. Of course I’ve missed out the bit where Johan has to fetch everything and bring it into my bedroom, which sometimes makes his head explode. It’s a massive task and I try and have my hair washed every week or so (with a full body wash) but sometimes my illness gets in the way.

Because of the problems Johan is having, we’re getting carers in again. We’re giving up on direct payments for now as neither of us are able to manage the paperwork yet, so we’re going back to commissioned care. As we’ve moved to a more central area, there are more agencies covering where we live so it will be easier to change if things don’t go well, but the old care company don’t operate in this area so we’re hopeful. This time we’ll be able to tell them what doesn’t work for us and how they can help us from the beginning, so that should make things easier as well.

We’re also going to be having council cleaners to come in and help, which we’ll pay for ourselves. This will be a massive help for Johan as he’s just overwhelmed with everything at the moment. Our social worker had forgotten that we’d asked for this already but we’ve told him again so hopefully that will happen soon. I think if Johan knows that we’ll be having someone come in every week to do the bulk of the cleaning it will take the pressure off and he’ll be able to do some of the easier things himself.

Things aren’t brilliant but they could be worse. Of course I’m aware that just being eligible for carers makes me very lucky, though it’s because I’m severely disabled and if Johan breaks down again I’ll have to go into a care home, which is more expensive for social services and which we don’t want (my current care needs are classed as substantial).

Now I just need to improve. First step, having that wash (hopefully today), then maybe soon I’ll be able to go into the living room again. I have some orphans to take around Azeroth 🙂

Danni

Beds and Bathrooms

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

I am in relapse. Every day I am doing worse. Currently unable to get out of bed other than to use the commode (which is next to the bed). I can manage 2 pillows under my head, but can’t be propped up any more than that. And I’m sleeping a lot more than I do normally. Pain is unbearable even with full dose of painkillers and I feel very ill.

It’s not as bad as it could be (see December) but it’s not great. I’m light sensitive but not exceptionally so, so can manage with low level lighting and normal glasses, and sunglasses if the light is brighter. My ear defenders are on and off depending on what upstairs are doing (they’ve recently moved in so are still building furniture and decorating). My blind won’t be put up until I improve a bit because of the noise so I’ve asked Johan to find the old curtains to put them up. I can still have Johan hold my hand. My speech was gone this morning but came back this afternoon. I can just about manage, though may need to see the doctor if it gets much worse.

The OT came out about the bathroom this morning. They’re rearranging the whole lot, boxing the pump in so it’ll be a lot quieter (the new lady agrees it’s far too loud, so that’s everyone so far :P), giving me a new shower with Danni-friendly controls (the OT showed it to me and let me play, and even with my current levels of weakness I could use them so will be awesome with my normal level of strength), the toilet will be moved back so I can lean on the cistern and the sink is going to be moved so there will be a bit more room in there.

The bad part was I was too ill to have my assessment for a shower seat, as the OT needs to see me transfer and I can’t do it today. I also had no voice so it was hard to communicate. The good news is that she’s given me her email address so I can email any questions to her. I think I’m going to ask to make an appointment just for assessment when I improve a bit, so she stops coming out when I’m stuck in bed. She’s also going to see about loosening the door a little bit so it doesn’t close quite as fast so we can get out easier. She can’t do anything about the communal door, but I’ve got my own ideas for that (a door stop that we only use when trying to get me through it).

Knackered now after typing this so I think I’ll have another nap. Hopefully I’ll be better soon. If I don’t respond to people on Twitter, Facebook or elsewhere, or disappear for a bit, this is why.