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Plans for the Future

Autism, Danni, Important Stuff, M.E., Penguins!, Physical Disability, Real Life, World of Warcraft 3 Responses »

May 102012

As it is M.E. Awareness Week I am blogging about living with M.E. On Monday I wrote about what M.E. is, on Tuesday I explained how it affects me, and yesterday I wrote about how I cope. Today I’m writing about my future plans.

Today I am having a pretty bad day, and feel a lot more brain foggy than is normal for me. It may have something to do with staying awake for well more than 24 hours before falling asleep around 8pm yesterday (I woke up at 10am). Writing long blog posts may also have something to do with it Luckily, today’s blog post is easier.

My life is pretty much on hold at the moment. I had to give up college as I was just too ill to get in or do the work any longer, and I’ve even had to give up watching some of my favourite television shows as even when I’m well enough to have them on I’m no longer able to follow the plots or understand them. I am hopeful though that I will improve (and eventually get better completely), and so I keep a list of my plans for the future. Some of these are small, some are bigger, but this is a bit like my bucket list so there’s no known time limit to achieve them. They’re not in any particular order.

Go to the library

Go to Blizzcon

Visit Interface

Go on a plane

Make a proper risotto

Bake a cake

Stand up without feeling faint/actually fainting

Play Diablo 3

Play Starcraft 2

Play Pandas! (Mists of Pandaria, the next World of Warcraft expansion)

Create an Android app

Go see Wicked

Have a dancing lesson

Go outside, all by myself

Go to Scandinavia

See penguins in the wild

See penguins in the zoo (since that will be a bit easier)

Feed the penguins

Get another sparkly purple penguin (mine went missing and I’ve yet to find a new one)

Go upstairs by walking

Go swimming

Go ice skating

Learn to put mascara on without poking myself in the eye

Design, make and wear my own dress

Go to Blizzard Headquarters

Finish the Undead storyline (In World of Warcraft- I actually have a seperate list with more WoW goals, but I won’t post that here)

Read The Shattering (a World of Warcraft book)

Read ALL the Warcraft books (even Knaak. Eek!)

Spend an entire day out of bed, without payback

Watch all Star Trek: Voyager again

Watch all of Star Trek: Deep Space Nine again

Actually, just watch all of Star Trek again

Start using Linux again as my main operating system (as I only using my computer for games at the moment, it’s currently on Windows)

Learn to drive (if it’s safe)

Go on a train (Metro doesn’t count)

Ride a horse

See the Olympic Torch at the Sage

Have our marriage blessed in church (this was originally planned to be around our 1st anniversary, but I was too ill)

Go to church again

Go back to the Linux User Group

Go to university

Get a job I love

Clean the flat by myself

Get a manicure

Go to Palestine

Catch up with my television shows

Go to a convention

Wear a costume, possibly to a convention

Watch Star Wars to see if I like it this time

Meet up with friends

Be able to rock, flap and bounce again

This is quite a long list, though it could be longer and I plan to keep updating it. I’ve missed some off- I desperately want to get well, but that’s not something I can just “do” (some of these goals are related to getting better, but I can actually say yes, I’ve done that, such as standing up without feeling faint or walking upstairs). Some of them I may never do, some of them I might be able to do pretty soon if my health improves a little bit. I may have forgotten some things (I hadn’t updated the list document for a while and though I tried to remember the others, my memory is very poor), and there are a few I’ve deliberately not mentioned for my own reasons. I’ve also been able to remove one of items as I’ve already achieved it. That made me happy

I want to particularly mention the last one on the list. One of the hardest things for me is that I’m no longer physically capable of or have the energy to do my usual stims (the repetitive movements/behaviours that a lot of autistic people (and a lot of non-autistic people as well) have). These have many purposes for me- they help me calm myself, help me understand and process things, but above all, they make me happy. I don’t normally do them in public unless I’m very comfortable or very anxious, but before I got very ill I used to be constantly in motion. People might not understand stimming, but I miss it.

Having M.E. can mean your goals change. I never would have thought I’d be excited by the idea of being able to walk upstairs, but that’s one of my goals now. I also had hoped to complete my A Level in Computing, but that is no longer possible. I celebrate every achievement- and that can include little things like eating solid food or sitting up for a few minutes. I’m grateful for what I’m still able to do, as there are people (including some friends) who are too ill to do even the little I can. I pray for more research into M.E. and for a cure to be found, but in the meantime I’ll just keep dreaming.

How I Cope With M.E.

Autism, College, Computers, Danni, Gaming, Important Stuff, Interface, M.E., Mental Health, Penguins!, Physical Disability, Real Life, World of Warcraft No Responses »

May 092012

For M.E. Awareness week I am blogging about living with M.E. On Monday I wrote about what M.E. is, and yesterday I wrote about how it affects me. Today I’m writing about how I cope with severe M.E.

Due to the severity of my M.E, I’m unable to do many of the normal everyday stuff that other people do. This doesn’t mean that I spend all my time moaning about stuff though (I do a bit of that when things are bad, but I try to limit it). I’m very lucky that I don’t have depression alongside my M.E, (in fact, I recovered from 12 years of severe depression a few months into getting M.E, which is hard to understand but I have my theories) so the motivation to do things is intact. It’s just my body doesn’t let me do them.

As I spend a lot of time lying in bed, I need something to do while there. The answer for me is the tablet computer I mentioned yesterday- my ASUS Eee Pad Transformer. Her name is Cameron She runs Android Ice Cream Sandwich 4.0.4 with a custom rom (that bit’s just because I’m a geek) and she basically keeps me sane. On Cameron I’m able to use Twitter (I like the Plume app- I’ve made it all colourful), keep up with emails, read blog posts and websites, play Draw Something (and get complimented on my drawings as I’ve got a 10″ screen which makes it easier than on a small phone), communicate with other people either online or when I can’t speak or it’s too exhausting, and when I’m well enough I can watch videos or television shows, read books or listen to music on it I’m also using it with the keyboard dock to type this blog post (the keyboard dock makes it like a netbook).

Twitter is an awesome source of support for me. As tweets are 140 characters or less, they’re short enough for my brain to process. I’ve met so many wonderful, supportive people on there, both with and without disabilities, and it’s so helpful to be able to talk to people who are going through similar things to me. I’m very fond of virtual hugs and squishes, especially as I’m often too ill for real life ones. The Spoonies* especially are amazing, as they’re all ill themselves yet try to help other people as much as they can. We celebrate each other’s acheievements, help each other with problems, and just chat and share things between us. I also get most of my news through there (often shared by someone I follow). Quite a lot of my day is spent on Twitter as it doesn’t make me more ill, and it’s a very postive thing for me.

I follow quite a lot of different blogs in my Google Reader, and try to read all the posts that are there. This doesn’t mean I necessarily understand them, and some of the longer ones can be quite hard (which I feel a bit bad about as I’m guilty of that myself) but it helps me keep up with things and follow what people are doing. Since reading is the easiest way for me to take in information, I read blogs in a similar way to how people listen to podcasts (which is very difficult for me- some people find it easier than reading but I’m not one of them) so it’s another good way for me to pass the time and feel like I’m doing something, even if I’m unable to comment very much at all. I also follow some I can haz cheezburger? and comic feeds that are normally good

My faith is very important to me, though it’s personal so I don’t talk about it all that much (it’s not that I’m embarrassed, it’s just something I don’t feel I need to share constantly). I’m a Christian (Anglican- mostly Anglo-Catholic though I’m very much for gay marriage, gay and female clergy at every level, and other “liberal” stuff) and knowing God is always there for me and Jesus knows what suffering is like is a constant comfort. I pray a lot, sometimes in words, most of the time without, and though I can’t make it to church I know He understands

I used to spend a lot of time on the AYME (Association of Young people with M.E) member forums, though now it’s difficult for me to get on there much. When I can though the support is awesome, especially from the other SAMs (severely affected members). I also receive emails and the magazine from them, and can contact them (or Johan can contact them for me) if I have any questions or I need help regarding my M.E. As most of the members are of normal education age it was especially helpful when I was attending college, as there were other people going through similar things. Although I don’t agree with their stance on some things (I’m not going to go into that here) the support I’ve had as a member, especially from the other members, is excellent.

I try to remain as positive as I can (this does not mean you should tell me or any other ill person to be positive- that just makes the person feel lousy). Everything I’m able to do is something to celebrate, even little things like being able to roll over and being able to eat solid food I am so grateful for everything I can do as I’m aware it could be so much worse. I limit the amount of bad news I read- I don’t avoid it entirely but as I can’t process things properly or do anything about it there’s no point me getting upset. I like trying to be as supportive of my friends as they are as me- not sure I manage that but I do like giving out squishes I hope they improve, especially those who are more ill than I am. I surround myself with things that make me happy- I have Penguin and Katie (my teddy) in my bed with me at all times (Penguin is normally in constant contact with me), Erica is close by, I have a penguin on my wall and a purple penguin canvas next to my bed. When we get the room decorated and the blind up it’ll be even nicer in here for me I know and like who I am and although I hate my M.E, I don’t hate myself.

When I can do something, I take advantage of it (though I try not to overdo it as that leads to payback or relapse). Sitting at my computer and playing World of Warcraft (which I currently do about 2 or 3 times a week, though I’m trying to build that up) is a big thing for me, even if I’m not well enough to do progression raiding with my guild now (though when I’m having a good day I can sometimes do Looking For Raid as that’s easy). That’s the best distraction from the pain and how ill I am I’ve got, as I get into my character and what I’m doing so well. Sometimes we’re quite creative to let me do things- I originally discovered I could stay upright in my wheelchair to stay upright by tying a scarf around my chest, which meant that getting a torso harness allowed me to go out a few times. That was just amazing and the memories from then helped me stay positive during the relapse. My weekly wash is one of the best parts of the week, even though it is so exhausting and painful at the time and causes payback.

The main thing I do is listen to my body. I don’t concentrate so much on what or how many symptoms I have (though sometimes they’re pretty demanding for me to know they’re there , but more on how I’m feeling overall. I then judge if I feel up to doing something, and if I do I’ll do it. Sometimes I get this wrong and overdo it, but most of the time this works really well and it allowed me to build back up from the relapse in December, and it’s helping me recover from the relapse a few weeks ago. I don’t have structured rests breaks (trying to do that and track them was too exhausting), but most of the stuff I do is pretty low energy and I often just stare into space or just lie there with my eyes closed for 5-10 minutes, which seems to work just as well. Sometimes if I feel I need it I’ll either nap or lie with my eye mask on to rest completely. I sleep when I feel sleepy (which is slightly different to the exhaustion and fatigue I experience all the time) and do things when I feel able to do them. It means I’m not always awake at the same times each day, but trying to force a “normal” sleeping pattern just makes me worse.

On the more medical side, I take tramadol and ibuprofen for the pain, lansoprazole to protect my stomach from the ibuprofen (which also helps with my acid reflux and heartburn a bit), cyclizine to cope with nausea, Buccastem (buccal prochlorperazine) if I’m vomiting too much to take the cyclizine (which works better and for longer, but the Buccastem works long enough for me to take it) and I was meant to be taking vitamin D and calcium supplements but the form I was given (a powder to be mixed up as a drink) was intolerable so I need to ask the doctor for an alternative (when I was last tested for them my vitamin D levels were on the higher side of normal after intensive supplementation as I’d been severely deficient and my calcium levels were normal, so it’s not urgent but it’s to prevent any problems from occuring). These make life tolerable. Last year I was able to come off the psychiatric medication I’d been taking for severe depression (which had helped me a lot) without any relapse. That was a big achievement for me.

Every medical professional I’ve had dealings with since I’ve had M.E. has been very supportive. Some have been surprised at how severe my M.E. is (I then tell them that it can be a lot worse) but all have accepted it’s a physical illness and just want to help me be as well as possible and hopefully improve. This makes me exceptionally lucky, but being believed and knowing I have medical support there makes things so much easier to deal with. The main advice I’ve been given is to get lots of rest, and there has been no suggestion that I do exercise or get any counselling to think my way out of this, though I do see a psychologist and a physiotherapist (the CFS clinic people) to help with management. I did have to have depression ruled out as a cause but due to my history I understood why my consultant wanted to do that before confirming my diagnosis. My old GP recognised my M.E. and initially diagnosed me. My new GP hasn’t even met me yet but has already been very helpful with prescribing medication and contacting the CFS clinic to see how they can help more, and if I need one I can get a home visit (I don’t want to bother them if I don’t need to, and the things I need at the moment are minor so can either wait until I can get there or possibly be sorted through another appointment that Johan attends for me),

I get (or am in the process of getting) all the support I’m entitled to (at least as far as I know). My benefits are currently sorted, and although I’m yet to be transferred over to ESA I’m obviously ill enough and very easily meet the criteria to get into the support group, though I’m aware I may need to appeal for that. My main worry is the medical but I’m hoping my GP will support me for a home visit, and I already convinced one ATOS doctor for DLA. I’m also entitled to social care, around 15 hours a week, which should be in place again soon. That should help quite a bit. I also go into a care home three times a year for respite to give Johan a break, which helps him loads which in turn helps me. We’re also getting some people in (paid for from my DLA) to do some housework.

My friends have been amazing. Some of them don’t understand M.E. itself (I’m happy to answer any questions they have or direct them to information if they’re interested but don’t want to force it on people who may not want or may struggle to understand) but they’ve all been very supportive and stood by me when I got more ill. They understand that contact may be sporadic as chatting to people is exhausting but when I’m able to they’re just the same as ever I’m unable to use Facebook much at the moment as it’s too confusing and exhausting so I don’t keep in touch as often as I like, but I like to see what they’re up to when I can and celebrate with them. I’ve already mentioned the Spoonies and my other friends on Twitter who are a great source of support, and as well as Twitter and Facebook I’ve also made new friends through AYME.

South Tyneside College helping me as much as they did and trying everything they could to help me achieve what I did and to try and help me continue was brilliant. I am sad that I just got too ill to finish my A Level, but I did get my A in AS Computing and I learnt lots at Interface (the autism unit) as well. A special mention goes to Simin, my Computing lecturer, the staff and students at Interface, and especially to Louise, who was my key worker/personal tutor the entire time I was there, and did everything she could to help me, not only with my autism but also with my depression and anxiety and then with my M.E. I don’t think I’d be coping anywhere near as well as I am without what I learnt at Interface and without the support that Louise gave me.

The main person who helps me cope with everything though is Johan. He is my husband and my main carer, and for both he’s been as supportive as he could be. He does everything for me that I can’t do, and helps me with everything that I need help with, and he doesn’t complain and acts like it’s no big deal (except when I’ve woken him up, but that’s understandable ). He struggles with some bits (the carer and cleaners will help a lot with that) and needs a break when he can get one, but he rarely complains and just get on with it. Without him, I’d be in a care home (which would be worse for me, especially long term). I love him so much and he helps me deal with life so well, and I’m so much happier being with him. I know he feels the same He often doesn’t realise just how much he does for me, but he’s giving me the best life I can possibly have with this illness and I’m extremely grateful for that. He is awesome

I was hoping initially that this post would be shorter than yesterday’s, but it’s turned out longer. I think I like that my coping post is longer than the post talking about how I’m suffering

*For the Spoon Theory, see butyoudontlooksick.com. It’s a very good, simple way to describe living with a chronic illness, especially one that can fluctuate like M.E or Lupus (which the author has) does. Some of us who use it call ourselves Spoonies.

Sleepy Danni

Computers, Danni, M.E., Physical Disability, Real Life, World of Warcraft 1 Response »

May 062012

I am still sleeping lots. Johan is taking advantage of this to go out in the afternoons when I am sleeping. He went to see The Avengers which he says is very good. I would like to go see it myself but that is not going to be possible unless I improve lots

I have managed a bit more computer time where I played World of Warcraft, but both times I have overdone it and had to lie down very quickly. This morning I had a bit of a moan about not being able to do what I want to do because I’m too ill, and Johan was very understanding. I also felt very guilty as I know that there are people who are doing loads worse than I am but Johan told me that was silly and that no-one should have to deal with M.E at any level. He is right.

In World of Warcraft Danni got a Darkmoon Cub this morning so that is good. I am trying to get 150 pets on her before Pandaland comes out, and I currently have 131 I think. If I get close to the expansion and I’m not fully there I will buy some on the auction house (I already have most of the cheap ones) and there are also some real life money ones that I can get as well, and I think Johan was wanting to get me one as a present. There are some Argent Tournament ones I still need to get and some Horde ones that I could maybe get using Catalia and Johan’s account. I shall look into it and see what I can do.

M.E awareness week starts tomorrow so I’m hoping to do some blog posts for that. I’m not sure exactly what yet but I will have something for M.E awareness day on the 12th. I was hoping to blog everyday during the week but that may not happen if I sleep too much or am too brain foggy. Doing these types of blog posts doesn’t take much mental energy compared to writing about important things where I have to make sure I get facts right and stuff.

My trousers were not delivered on Thursday. This made me angry and upset as they didn’t even try to deliver them (they claimed to have left a card but none could be found, and our doorbell is very loud and wakes me up so I know they never rang it). I sent the delivery company an email saying this to them and they delivered them on Saturday instead. They are very nice though a little bit short when sitting down. That is okay though as I’ll just wear some nice socks with them We have worked out to get the proper length trousers for me sitting down I need 40″ inside leg which is very long. I may get one nice pair tailor made at some point when my weight has stabilised a bit more so I have some proper smart trousers I can wear. Until then though my new purple ones are awesome and not scratchy

I want a television in my bedroom. Currently am not well enough to lie on the sofa (tried- it made things worse) but I can manage some television watching so when I can I’m watching some on my laptop, but as my overbed table is still not here (our old next door neighbours have kept hold of it and other stuff for us- we’re trying to organise getting them here) it is a bit awkward on the bed as it is too heavy for me to have on me for more than a very short period of time. Of course a television for my bedroom is quite low priority but it would be nice to have. I already have a unit that it will go on and know where to put it. Johan is also agreeing that I should have a television in my bedroom since I spend so much time in here. What I like to do is have the television on with something that’s not too difficult to cope with, like reality shows (though not singing ones) and then be on twitter or something like that on my tablet as well as I cannot concentrate that well. I also want to watch some films again at some point- the X Men films, try the Star Wars films to see if I like them this time, I want to see Happy Feet 2 and the Hunger Games once it is out on DVD since I won’t get to see it at the cinema.

I am in a lot of pain despite taking two tramadol (I did manage a short time with just one but then I overdid it on the computer- silly Danni) so I think I’m going to try and nap as I am also very tired. I just hope the nightmares aren’t as bad as this mornings.

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 1 Response »

May 032012

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

I Want a Bath

Autism, Computers, Danni, M.E., Physical Disability, Real Life, World of Warcraft 1 Response »

Apr 302012

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

Dead Drive

Computers, Danni, M.E., Physical Disability, Real Life, World of Warcraft 1 Response »

Apr 182012

As I write this, my blog is not working. On Sunday night as I was typing up another blog post (which I may or may not post- some of it is no longer relevant) the server this blog is hosted on suddenly died. Some quick diagnostics showed that the main hard drive was dead (at least we think so- fsck on that drive would cause a kernel panic, which is not normal behaviour). Due to various issues it took until Tuesday to get a new drive in and the operating system installed. As my emails go through the server, we set up a temporary account so that my normal email forwarding would work again. Luckily it seems I’ve not lost many- most of the important ones from Monday and Tuesday seem to have come through, along with lots of unimportant ones from Sunday, Monday and Tuesday.

All the accounts on the server had been backed up on the 14th (the weekly backup), and I have a database backup for my blog from the 15th. Once the backup drive is reconnected all the accounts will be restored, and that will mean my blog should work again and I’ll be able to post this. That should happen later today (Wednesday). It’s very frustrating, especially since I’m no longer well enough to sort it out like I used to, which would have sped things up a bit (Colin working is one of the reasons it took a while to sort out).

Normally my email system makes me happy. Everything is backed up on the server, then it gets forwarded to GMail. So long as the server is working, this means I have two copies of all my emails, which means that should I lose access to my GMail account it won’t be anything more than a minor inconvenience. I may need to rethink it after this though. I don’t mind massively my blog being down for a few days, but I’m going to start keeping my own backups on my computer so if something like this happens again I’d be able to move it quickly if needed (which would also solve the email problem as I could set up the forwarding again from wherever I move it).

Apart from the server playing up so I was without access to my emails for a couple of days and my blog for three, I’ve been doing not brilliantly. I think I’m relapsing a bit. Monday I slept for 20 hours, which meant I didn’t eat. Tuesday I saw the nurse, but wasn’t well at all and couldn’t hold my head up, which was very uncomfortable (the harness held my body up so I wasn’t slumped anywhere near as much as I would have been otherwise). I’ve also been in a lot of pain- at midnight I took two tramadol (I can normally manage with one) but I’m still in too much pain to sleep, despite being sleepy enough. I managed to go on the computer for a bit on Tuesday evening to sort things out, do a Tesco shop and manage a couple of easy quests in World of Warcraft, but it was a bad idea really as I’m paying for it now. Before that I’d not been out of bed since Friday night, other than to see the nurse. I’m mostly bedbound again.

So, seeing the nurse. We’re about 10-15 minutes pushing distance (took about 10 minutes to get there, 15 minutes back) from the doctors surgery, and my head was floppy the entire time, which was very annoying and uncomfortable. It turns out the appointment was an hour later than Johan thought, and by the time I got there I was feeling really ill. The nurse was able to squeeze us in though so I didn’t have to go back. We went in and it was fine. She noticed my penguins and told me see had been to New Zealand and seen some there (good move- talking about penguins automatically makes me calmer) and then we went through some of the registration questions (Johan had told her about me at his appointment so I didn’t have to answer all of them). She told Johan off for not taking in his urine sample (he’d forgotten) but it was in such a nice way he didn’t feel bad. I told her my height and weight as they don’t have the facilities to do them if you can’t stand there, and she didn’t ask to take my blood pressure or anything probably because she could see it would have been too much for me. She told me if I needed a home visit at any time that is no problem (she knew from me having to cancel last week that sometimes I’m too ill to get to the surgery) and also said she’d ask about a wheelchair assessment for me. We likes her a lot It definitely feels like a community doctors, where everyone knows everyone (the nurse said that she was glad I’d made it in because now she could put a face to a name and she never forgets anyone) and I was spoken to in a very warm, nice way that wasn’t patronising. When we got home Johan hauled me onto the bed as I wasn’t well enough to get myself on it (not paralysed for once, just far too weak and uncoordinated) and I rested for a few hours.

Johan also went out to get a blackout blind for my bedroom. If I am starting to relapse, then this will be important to keep my room dark and try and reduce the amount of symptoms I’m getting (I’ve had periods where I’ve had to wear sunglasses in bed already). It will also help as my sleeping pattern is completely broken so sometimes I can’t sleep until it’s already light. The blind is purple so will work well in my bedroom

There is so much I want to do. I want to read. I want to go out more. I want to be able to watch my favourite television shows, not just the ones that don’t overwhelm me or don’t require my concentration. I want to be able to tidy my bedroom Maybe one day.

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 2 Responses »

Apr 072012

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 ) 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 ).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)

My Little Pony: Friendship is Magic

Danni, M.E., My Little Pony: Friendship is Magic, Physical Disability, Real Life, World of Warcraft 3 Responses »

Mar 102012

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.

Exploring the Darkmoon Faire

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

Jan 042012

Danni in Transmogrified gear.

I’m still improving physically. Sitting in my computer chair is no longer a problem, and I can manage it for several hours without getting any worse. The only problem is movement makes me very ill, so if I try and go in my wheelchair to the bathroom I start feeling really dizzy and sick. As the bathroom is quite a distance away by wheelchair thanks to how big our rooms are, I’m using the commode for now. This also has the advantage of me being able to use it when I want without asking, as I can transfer by myself again (Johan says emptying it isn’t any more difficult than pushing me into the bathroom, so he doesn’t mind).

Cognitively I’m not doing too brilliant. There’s been a slight improvement, but writing emails is beyond me, as is understanding Facebook. I am however managing to play quite a bit of World of Warcraft, and since I’ve not been on for ages I have lots to catch up with. This week the Darkmoon Faire is on, and they’ve changed it since the last time I was there (the changes were in place last month, but I was too ill to see it then). It now has its own island, lots of games and quests, and I’ve been having a lot of fun with it My favourite game is the ring toss, as I never need more than one token for that Also available there are replicas of some of the sets no longer available, including the Devout set I want for Danni, my priest. I’ve managed to get enough prize tickets for the robe, and have done some transmogrification of other items to match it while waiting to get the other items in the set. I may keep the witch’s hat though, as I like that

I’ve also been doing quite a lot of heroic dungeons on Danni, as the new ones are very short and easy, and (as I said to one of my groups) it doesn’t matter that I’m now rubbish at healing because no-one dies anyway I’ve also ran a bit of Raid Finder, which is interesting but requires more concentration. I am definitely a lot worse at healing than I used to be, and was normally one of the bottom healers, but it was fun and no-one yelled at me, which was good.

Since I’m now able to sit up and do more, I’m going to start making lists of things I want to do. I have television programmes I want to catch up on, lots of things in World of Warcraft I want to do, and films I want to watch. I also have blog posts I want to write, but my concentration isn’t there for them. I’ve got a couple of them in draft form that I’ve started, so I may have a look after this to see if I can finish one of them. I’ve also still got two emails to write, so maybe they should come first. I phoned Sammie on Monday and that went well, so I’m hoping to phone her every weekend to see how she is and things. I’m going to buy a stereo Bluetooth headset for this as I’m finding it hard to hear her a lot of the time and being able to hear with both ears may make it easier.

I’m not sure how I’d describe my M.E. right now. It’s nowhere near as severe as it was, but I’m still housebound and mostly stuck in one room, especially since moving makes me feel so ill. I only manage to get on my computer as it’s very close to the bottom of my bed, and I can go straight from the bed onto my computer chair. Once I’m in my computer chair I’m reluctant to get out of it again as the moving between chair and bed also makes me very dizzy and nauseous, though it eases off quickly once I’ve stopped moving. I’m able to eat okay, and even manage a spoon sometimes Being able to sit up though (even in my reclining computer chair) is brilliant, and playing games online (both World of Warcraft and The Sims Social) is a brilliant distraction from the pain and how ill I feel.

I’m also very happy at the moment. Some of this is being really grateful for what I’m able to do now, and for any improvement. Me being happy is also helping Johan’s mood, which is great. I still have the occasional meltdown, but that’s mostly due to sensory overload and is over quickly. Most of my penguins are now sitting on the sofa, as my single bed isn’t big enough for them all and I can see them from my bed there. Tomorrow bidding opens again for more council houses, and we should get somewhere soon. Our urgent priority is for two bedroom bungalows or ground floor flats, with step-free access and a level access shower. We’re not too fussy on where we move to so long as there are decent bus links, but ideally I want to be along Durham Road or close to there because it’ll be so easy to get to Gateshead and there are normally a lot of shops and facilities. The two bungalows I bidded on over Christmas were both in Birtley, which would be awesome (I also bidded on a three bedroom house in Blaydon, but we won’t get that even though it’s adapted- it was the most suitable of the other choices though).

Somehow this outpouring of thoughts has gotten very long. How come I can type really long blog posts in not very long (about 15 minutes on this one) but not short emails or blog posts on important subjects? I don’t know

Patch 4.3

Computers, Danni, Gaming, NaBloPoMo, Penguins!, Project 365, World of Warcraft 1 Response »

Nov 302011

Today has been a World of Warcraft day. I have spent far too much time sitting at my computer playing that game. The reason for this is today patch 4.3 – Hour of Twilight was released. To people who now have no clue what I’m talking about, this means there’s lots of new stuff to do in the game that there wasn’t yesterday.

The first thing I did was get Danni sorted with some nice gear. I decided that until I get around to farming a proper pretty set of armour, I was going to wear Black Mageweave (I am a tailor so made it myself), which is less pretty and more sexy. Up to now I’ve not seen anyone else wearing it, so that is good.

I then started dumping most of my old gear from my bank into void storage. And got angry because some of the items weren’t allowed in, for vague reasons. Like my Ashen Verdict ring that I kept from Ice Crown Citadel. I managed to dump quite a bit in there though, and that meant I could dump stuff from my bags into my bank, so now I can actually use my bags again. This is good.

After a long rest, I went back on to do the new 5 man dungeons. We got a mostly guild group together, and had a pug mage from a different realm who was awesome and gave me cookies. The new dungeons were a bit challenging but not too hard, and were tons of fun. I did sit up for too long so I could complete them all (we had a few wipes while learning what to do and with me occasionally failing) but it was worth it. The individual dungeons are short enough that if I’m having a good day I should be able to run them, so that’s awesome.

There’s also a new raid, but I’m not geared enough or well enough to try that yet. Maybe when I improve a bit.

Johan went out today to the MetroCentre. Apparently it was packed. This may have had something to do with a strike that was going on, that meant most of the schools were closed, among other places. He didn’t really buy anything that I saw, but did use his mobile phone to buy a McDonalds on the way home, paid for by Google. That was cool, though I want a McDonalds and can’t have one because the bus drivers won’t let Johan carry one on for me

I am now hungry. I have to wait for Johan to complete a dungeon before he can even start cooking. This means I’ll have to stay up late. I’m not particularly happy about this. At least I can watch Penguins in the meantime.

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