Category: Mental Health

Danni

The Wonders of Adaptions

Autism, College, Computers, Computing, Danni, Gaming, Interface, M.E., Mental Health, Physical Disability, Real Life, World of Warcraft

After my visit from the CFS clinic peoples on Thursday, I’ve been thinking a lot about how adapting things is meaning my life is actually pretty good for someone with severe M.E. (though at the higher end of severe- yay improvements!). I’m unable to sit up unaided for more than a minute or two without feeling horrendously ill and getting severe payback. What sitting I do do is normally limited to using the commode or a toilet- to manage it I either have to be held up by Johan or I lean on something in front of me- my bed or my wheelchair most commonly.

Most people who can’t sit up would be stuck in bed all day, as I was until very recently. Thanks to a tip from a fellow Spoonie friend, I found and bought a tilt in space reclining wheelchair on eBay. It’s not perfect- I’m too tall for it and as it’s a manual I’m completely reliant on Johan to move it and to adjust it, but it’s many, many times better than my old, unsupportive wheelchair that I could only managed by being strapped up and even then would pay dearly for any use of it.

This wheelchair means I’m no longer completely bed bound. As it’s tilted, gravity keeps me in position so I’m not at risk of falling so don’t need strapping in (though it has a seatbelt that I use to stop it getting caught in the wheels, mostly :P). As it’s reclined, I don’t get the horrendous symptoms that being too upright causes me. Since my health in general has sightly improved, I can now manage most of the day sitting/lying in the chair, which means I can go into the living room and use my desktop computer (which means I can play computer games, which are an excellent distraction from pain and horrible symptoms) and also means I’m able to go out about once a week to go shopping or for a meal or something. I’m very lucky in that noise, light and other sensory stuff don’t make me as ill as they once did, so with sensible precautions (sunglasses, headphones and ear defenders as needed) I’m able to tolerate gaming, the outside, having the television on and stuff pretty well now. I can also sleep in it if I need to.

Since I’m getting less muscle spasms and am a tiny bit stronger, I can now use a fork or spoon again. Only a very lightweight plastic one, and I have some foam tubing over the handle to make it easier to grip (which also absorbs the spasms I still have which helps). My physiotherapist recommended the tubing (she said to get it from a DIY shop, though we got ours from Complete Care Shop as I was buying other stuff from there at the time anyway). This means I can feed myself foods that I can’t use my fingers effectively for, and don’t need Johan to feed me. I still have days I can’t manage it, but when I can it’s amazing for my independence.

When I’m in bed, I don’t have access to my desktop computer. I have an over bed table (also from Complete Care Shop- I really like them for decent priced disability stuff) so I can use my laptop if I want/need to, but for most things I use my ASUS Eee Pad Transformer. I used to use my mobile phone a lot in bed, but as my M.E. got worse I found typing on a small screen (even with Swype or Slide-IT) really difficult, especially when my hands were shaky or spasming a lot. Having a tablet is much better for me, as the screen is bigger so the keys are as well, I can see things better on the bigger screen, if I’m lying on my side I can just prop it up with pillows/a teddy/my hand, and it also has a keyboard dock that means longer typing things (such as this blog post) are much easier and it becomes like a lightweight netbook.

Using my tablet means I can read blogs, use Twitter (and Facebook, though I find that harder), play Draw Something, keep up with emails, check my calendar, the time, the weather, read websites, listen to music and lots of other stuff when I’m stuck in bed, serving as a distraction, keeping me in touch with friends, and basically helping me keep my sanity, especially when I can’t sleep at night (which happens a lot since I’m naturally nocturnal, and I also sometimes get painsomnia). I also use it with Kindle to try and read children’s books when I’m able to, and use it to communicate with Johan through Google Talk as we both find that easier than talking a lot of the time (or when he’s gone out).

I also have an iPhone. I never thought I’d get one (I’m a big Android lover- I have a HTC Desire and my tablet also runs it), but I discovered that there are better communication apps for iOS (I have a couple on my tablet but they’re prone to being buggy). My main uses for my iPhone are for internet tethering when I go out (yay for 3’s One package with actual unlimited bandwidth and tethering allowed) and as a communication device when I’m unable to speak, using the awesome Grid Player (the iPhone/iPad app is free, but only comes with a couple of grids- fine for occasional use but I’m thinking of buying the main Grid 2 software for Windows so I can customise them, though that’ll be a few hundred pounds). I also have apps on there for checking my bank account, emails, calendar and stuff and sometimes use it when a tablet is too big for whatever reason for the stuff I’d often use my tablet for (the iPhone keyboard is remarkably shaky/spasmy-hand friendly, to my surprise).

Without my technology, I’d be stuck when I can’t speak, as I’m unable to hold and write with a pen (I can sometimes manage a scribble for a signature, but that’s very hit and miss and I can only do it once). I’d be much more isolated, bored out of my mind (as I’m unable to hold up physical books most of the time, plus I can’t change the text size if needed). I’d be unable to talk to my friends, wouldn’t keep up with my interests, wouldn’t be able to manage the household finances or help with the shopping (we do it online- sometimes I place the order and Johan helps me, sometimes Johan does it but I go through the online shop myself to choose things). I communicate with pretty much everyone by email, Twitter, Facebook or instant messenger, including people like social services, the council and even local businesses, so I can feel like a part of society even when I’m too ill to go out into it.

Another thing that makes my life so much easier is my Trabasack. I’ve reviewed it before, but it does help me a lot. Right now I’m using it with the media mount to hold my tablet and the keyboard dock in the right position to make writing this blog post as easy as possible in bed. I use it as a table when I’m in my wheelchair- when I go out I use the media mount to hold my tablet (normally without dock) in the correct position to make it easy to use (and Purple Penguin can peek out at the back :P), and it’s my table when I’m eating as well- in bed, when I’m in the living room, and even at Wetherspoons if I can’t get under the tables (as I’m tilted and reclined, my seat is very high and rather long). Oh, and it’s a bag as well so when I go out I keep my glasses, bus pass, purse, medication, tablet dock, tissues, waterproof cover for the Trabasack (useful especially when it rains- which happens a lot in this country), letters- all that sort of stuff in there. I used to be able to get my college books in there along with my tablet and a bottle of pop, though you can’t carry all your technology and your clothes in it for a trip, as Johan once attempted (it resulted in the bag splitting :P).

I have other things that make my life easier. I now live in a ground floor flat, with a wetroom (which will be perfect when I can use the shower and the toilet safely- we’re waiting on the OT for that) and a ramp. The rooms are pretty big and the doors are wide enough to get my chair through without problem. I have a commode so I can go to the toilet despite not being able to get to the bathroom most of the time (and at the moment I can use it independently most of the time- though when I’m a bit more ill I need Johan to help me). I have a double bed to myself so I no longer fall out of bed and can use lots of pillows to hold me in a comfortable position, which we’ve raised up using elephant feet to make transferring easier and to help my carers out. I have a Hydrant (also reviewed before) that means I can drink by myself even though holding a cup is difficult to impossible. I use extra long straws and napkleens to try and stop spillages.

I’ve also adapted to being ill and physically disabled. When I first got M.E. I tried to push through it as I’d always done, only to get more and more ill. I am exceptionally stubborn and that is good for some things, but not so great for others. Due to my other issues and disabilities, it took a while to get diagnosed, so I didn’t know I had M.E. to know to rest. When I did find out it took a while for me to figure out the best way for me to manage it, as with being autistic as well some of the normal methods were a bit counter-productive for me, plus I was still being stubborn about doing Computing at college 😛

I lost the ability to walk pretty quickly- I first used a wheelchair seven months into the illness (before I’d even twigged on to it not being just depression), was using crutches most of the time not too long after that (and a wheelchair for longer distances), needed a wheelchair outdoors all the time just after a year into the illness (I realised this when I tried to walk to the doctors and nearly didn’t get back home), and then had a big relapse that completely killed my ability to walk even one or two steps about three months after that, caused by overdoing it when Johan got the flu and then exam stuff. Although using a wheelchair didn’t cause me to be unable to walk (if I’d used it more often earlier on I may not have become as ill as I did) I adapted pretty quickly and realised mobility was more important.

I managed to complete a year at college (using a wheelchair most of the time, though I could walk with crutches in Interface initially), thanks to the support of my tutors and support staff at college. My illness continued to get worse over time (some due to me still pushing a bit, despite everyone around me trying to tell me not to- silly Danni, and some just generally getting worse) and I realised I couldn’t manage the second year when I tried to get in for my fortnightly lesson (the college had agreed I could do most of it at home) and ended up lying on the floor of the chill out room at Interface exceptionally ill just from trying to get there. At that point I was mostly bed bound but hadn’t exactly accepted it 😛

December last year I reached rock bottom. Lots of things added up and I had a massive relapse, which at its worst meant I was barely existing. The only reason I didn’t end up in hospital is because Johan didn’t know to call a doctor out when I stopped being able to drink (luckily only for a couple of days- I was too exhausted to be able to swallow). I couldn’t eat, couldn’t move, was in so much pain I was hallucinating, was in and out of consciousness, couldn’t deal with any stimulation (Johan being in the same room was hell, I couldn’t tolerate any noise, light or touch at all), couldn’t communicate. Luckily the worst of it lasted only a few days, though I was still very very ill most of that month, and although I’m improving now I’m still pretty ill.

One of the things that experiencing very severe M.E. in December has done is given me a new perspective. I currently judge how I am based on how I was in December, rather than what I was like before I had M.E. That way, I know I’m doing really well and improving, even if from the outside I’m still severely disabled. I might not be able to sit up (though I’m very very slowly trying to work on that), but I can go out- which is more important really?

I’m lucky that I have very supportive professionals helping me. My GP at my old flat actually had a decent understanding of M.E. (he was the first to diagnose it, and although he knew he wasn’t an expert did try and help any way he could). My specialist is very good with M.E. (even calling it that) and I really need to see him again as the only problem was he doesn’t do home visits and I was too ill to go to the hospital 😛

The CFS clinic people see me at home, and despite their insistence on calling M.E. chronic fatigue syndrome (which I disagree with but think that getting into arguments about the name isn’t going to help me right now) they’ve been exceptionally helpful. When it became clear that I wasn’t well enough to try graded activity therapy (trying to monitor my activity levels was making me more ill) instead of telling me to continue they told me to stop and came up with a plan to help me learn to manage it myself. What I’m doing now is trying to listen to my body. I do what I feel able to do, and rest when I need to. I’m trying not to worry about when I sleep while it’s been disrupted, though ideally I want to be getting into some sort of sleeping routine in the long run. I can nap if I need to. I’m not worrying about walking- my physiotherapist would much rather I be in my wheelchair as much as I can be than walking a tiny bit but then spending the rest the time in bed. By the way, they’re okay with me in bed if I need to be- I’m not to force myself up if I’m not well enough, it’s just at the stage I am now I can go in my chair (which they like, and they’re supportive of the idea of an electric version so long as I can transfer safely) and that’s better for my body than being in bed all day as I’m slightly more upright and moving a little bit more. They want me to use equipment and things to improve my quality of life, and the main thing is I’m not to overdo it if I can help it.

They’re helping me with the goals I want to achieve. I want to go to Leeds, but I’m not well enough yet. They’ve suggested that I try staying in a hotel somewhere a bit closer first, and then if I can manage staying away from home then work on being well enough to be able to travel and stay away. I want to go to the cinema, and they’ve said that I should try that after I’m able to watch an entire film plus do stuff on either side (to allow for the travelling) at home first. All very sensible, and it helps me plan what I’m wanting to do.

They also say that the attitude I have now, of accepting what I can and can’t do and not pushing myself to do more than my body is capable of just because I feel I should is the right one to have, and the one that’s most likely to help me improve. I hear so many people being told to push through their symptoms by professionals (and other people), yet I’m being told to listen to mine and not to overdo it by pretty much everyone (one GP excepted). I take medication as I need it (painkillers, anti nausea tablets, that sort of thing) and try really hard to stick within my body’s limitations. It seems to be working- I’m improving. I still have a long way to go (I can watch television, as in tolerate the light, sound and movement, but can’t follow a plot, and I can physically manage reading an ebook but struggle with following the plot, which is why I’m sticking to children’s books right now) but I will get there.

I know how lucky I am to have the support I have. Johan looks after me day and night. He gives me my medication (capsules and tablets are hard to hold, as are cups with drinks to take them with, plus I can’t remember when to take them), empties my commode, prepares and cooks my food, fetches everything for me, takes me into the living room or outside, helps me with getting changed and washing if the carers aren’t here, remembers things for me, helps me when my brain is broken, lifts me when I’m struggling or I’ve fallen, supports me in every way, as well as being my husband and a brilliant friend. I have carers who wash me, change my clothes, brush my teeth and hair, and who also help with the housework to take the load off Johan a bit. We now have a cleaner who can do more in an hour than Johan can do in a week (I can’t do any of it at all). I have the support of the CFS clinic, who may not have a cure for me, but are doing their best to help me have the best quality of life I can and try and help me improve it a bit. My friends have always been there for me, even if my illness means that keeping in touch can be difficult or even impossible at times.

I still have severe M.E. I can’t sit up, I can’t walk, I have pretty severe cognitive issues, I need help with nearly all tasks, I have to be very careful about how much energy I use for anything. But with the slight improvements to my health meaning I can tolerate just that bit more, and adapting things, my life is pretty good regardless. And I’m happy.

(I’m also happy that I’m able to write this blog post, meaning that after my big scare a few days ago my brain is finally getting back to where it was- I may not be able to remember the things I need to and ask for pasties I don’t even like in Greggs as I get words muddled up, or follow plots or things, but at least I can do massive word dumps again 😉 )

Danni

Discord

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

This is one of my favourite pony songs at the moment. I like both this version and the original, though as I heard this one first I slightly prefer it. The music video is filmed locally as well, which is a bonus 🙂

We are no longer having the carer we didn’t get on with. The agency has been excellent in trying to sort it out for us, and we met a new carer yesterday (Tuesday). She is very nice, and I’m probably going to be asking for her to come all the time (at the moment she’s only coming occasionally). Both the manager person who came out and the new carer said that we had to be comfortable with whoever comes into our flat, so they understood why we couldn’t have the other carer. It’s nearly sorted (though we don’t know who is coming today) and we’re both feeling better for it.

I’m still going on my computer most days. On Monday I finished the raid with my guild- I’ve now completed normal mode Dragonsoul, which I didn’t think I’d be doing this expansion. It makes me very happy and I’ve had lots of requests for me to raid again 😛 I’ll have to be careful as my health needs to come first, but up to now it’s been good.

Yesterday I slept most of the day. I woke up very nauseous and had to take cyclizine, and it knocked me out. It normally only does so for 2-3 hours, but this time it was most of the day, though I did wake up a couple of times for an hour which meant I got to meet new new carer and the manager person when they came.

I woke up properly when new new carer came for our evening call. She was 15 minutes early, but when Johan said I didn’t like people being early she was happy to wait until 8.30pm and come back. The call went well- Johan taught her how to use the electric toothbrush (I don’t know why, but it confuses everyone), she gave me a bed bath with my wipes (I felt I could trust her) and got me into pyjamas (pink penguin hoodie ones!), brushed and plaited my hair and we had a chat. She also tried to find out who was coming today, but the on call guy forgot to get the sheet. It’ll be okay though.

Although she’s not quite as awesome as lovely ex-carer (who somehow had a personality that fitted in exactly with ours) she is very nice and I can tell she’s doing the job because she cares, rather than just for the money. She also wants to get some of the bath in bed wipes for her brother (who is also disabled- that is how she got into caring) so I gave her the web address.

After she went and I’d rested for a bit, I went on my computer and played some Bejeweled Blitz and then went into World of Warcraft to do Argent Tournament dailies. I am wanting the mounts and the pets for the achievements, and eventually to sell the pets as I think that would be a good income source for me. The only daily I dislike is the commanders jousting one as the birds keep breaking my shield, but since I’m level 85 now I no longer die there so it’s not as bad. I got a Mechanopeep (pet) and a Turbostrider (mount). They are both red. I’m going to look awesome with them 😛

Johan got me settled in bed after I’d finished them, and heated up Penguin and another wheatbag as my feet were blocks of ice. He also gave me painkillers and got me some cheese and apples as I’d slept so much I’d not had a proper meal. Since then I’ve been reading blog posts, writing this one and chatting to Pocket Pennies on Facebook. I’m hoping to get some sleep before the morning call, but since I slept all day I won’t be surprised if I don’t.

We never heard back from the care home, so since it has to be sorted this week we’ve decided to stick with the one near our old flat. It might go better now I can actually spend time in my wheelchair, and they said they can arrange transport if we need it (which we will, as I’ll need to be reclined and tilted in my wheelchair to manage the journey).

Johan really enjoyed the cricket. He was right at the front so got to see everything, and said it was really exciting. It ended in a draw, which is apparently quite unusual for 20Twenty. I want to go when I’m well enough 🙂

I have a couple of events I want to go to. Probably not going to happen but planning is almost as much fun so I pretend I can go for a bit 🙂

Pain and nausea may be pretty bad at the moment but I’m coping with meds and penguins and sleep and I’m happy overall. It is funny- nearly everyone who meets me now says I’m really cheerful. It is very easy to be positive when you don’t have depression. I want Johan to get better as well, but that may take a while. I wish there was a magic cure for depression (and M.E), but until there is one we just do what we can to make life as bearable and as good as possible. I likes being autistic as it means I can be super happy just by having penguins. Johan likes Fluttershy in a similar way 🙂

Fluttershy vs Penguins

Fluttershy vs Penguins by Kasatania.

Danni

Wheelchair Fun

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Danni

Escaped!

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

Today I escaped both my bed and the flat and went outside 😀 It seems that now I’m finally over the cold that was causing me to relapse, I’m not too far off where I was in April before it. Still resting lots and taking it pretty easy, but this is good 🙂

Last night Johan washed my hair, and then I got dressed for my doctors appointment this morning (it may sound a bit odd, but it was a t-shirt and leggings and it’s because I need at least a few hours to rest after getting dressed). I’d slept a few hours yesterday evening (about 5pm-10pm, after waking up at 1pm) and so didn’t get to sleep until about 4.30am, then woke from a nightmare at 5.36am (I looked at my watch) :(. Managed to get back to sleep and was in a weird but not as scary dream when I woke up with the alarm at 7am. (The dream had something to do with having the wrong router and it was showing up on the telly where an episode of the Simpsons was playing- weird but not massively scary :P).

I gave Johan cuddles to convince him to get out of bed, then we got ready and left and actually arrived early! Johan’s appointment was 8.30am and mine was 8.40am, as when Johan made them he didn’t think I’d be well enough to go (I was being stubborn though :P). Saw the doctor who was the nice one Johan saw the first time, who apparently is rarely there. She is brilliant- wanted lots of details to help Johan (he’s being referred back to the psychiatrist to help stop him getting so depressed again, as she doesn’t feel primary care has enough knowledge on how to deal with his particular type of depression), then I said hello (she asked if it was that type of appointment when I told her I’d not been well enough to go to the last appointment either), asked for some more tramadol as I’d been taking loads during the relapse, and for some lactulose to help prevent me getting as badly constipated again, which she was happy to do. We also discussed my M.E. care (she’s impressed that I get home visits- as am I) and how my consultant had been asking GPs for the numbers of M.E. patients a few years ago as he was wanting extra funding.

She also mentioned that she feels that GPs react badly to M.E and other illnesses that they can’t cure especially when there’s no-one more specialist they can refer to, but since they have my consultant in this area they feel better able to deal with it. She also said that’s probably why some doctors deny it exists, because they’d rather it didn’t exist than accept there was nothing they could do for it (even referring on to a consultant). That actually makes some sense, so I’m very grateful that I live in this area. I explained what the CFS clinic actually do and where they’re based (information she didn’t have) and then we talked a little bit about my oversensitivity to medication (Johan mentioned it first for the lactulose as I didn’t know dosages as only had it in hospital before, then I explained there’d been some research into it regarding autistic people and things which she was interested in).

I can see why Johan came home not anxious last time- she’s very friendly and professional at the same time, is confident in what she knows and also in what she doesn’t know, and wants to do the best she can for us. She’s also put in a referral for Johan to get a social worker to help him with his autism related issues, as mine can’t do much for that.

Afterwards we went to the chemist to pick up my prescription, then went into Gateshead as it was nearby, we needed some toothpaste (and a drink to take a painkiller with as we’d forgotten to give me one before I went out- whoops) and I wanted to go into a shop! Went into Wilkinsons, I looked at makeup for the prom (and decided I best go back with my sister Meggy who is doing my hair and makeup to pick what I need, as mine has gone walkabouts), picked up the toothpaste, facecloths (we needed a couple more) and a drink, then went to the checkout where Johan’s card was declined and he’d forgotten mine (and only had about 40p in cash on him :P). We figured out why it had been declined, said we’d come back and went to the bank.

It turns out the bank hadn’t changed his address properly and the new card for his new account (he upgraded his to a proper adult one :P) had been sent to the old address. Not sure it wasn’t picked up last time he mentioned he hadn’t received the card (he’s asked twice) but the man there found the problem, fixed it, ordered another new card to be delivered to the place we now actually live and gave him some money (out of his account). We then went back to the shop to pay for our stuff, I took a painkiller (I was really feeling it by that point as it had been about 1am when I’d last had one and it was now 9.30am) and we got the bus home.

The carer was due at 10am, but we got home at 9.55am. The woman with the paperwork arrived just after 10am, and started on that while waiting for the carer. Everything was fine and we realised that things were different almost straight away. I’m going to have one main carer, and then they’re going to get a couple of others to meet me and to be available for those times the main carer isn’t working. That means only 3 people to get to know! There may be emergencies when they’ll need to bring in someone new but they try to avoid that and stick to those three. Then the carer who is going to be my main one arrived, and we got on straight away 😀 She was late because she’d just walked about a mile, which is fair enough (we’re fine with lateness, it’s earlyness that I can’t cope well with).

New carer is American, very eccentric, and has a very similar sense of humour to both me and Johan. The woman doing the paperwork (who is also a carer) was very lovely as well, but she was a little bit left out as the three of us started talking about all sorts of things. We did all chat about how the agency works a bit, as we explained what happened with the old agency (they were horrified, and the paperwork carer was wondering how they managed to run anything that way) and they were able to reassure us that they weren’t like that. They’d already been told a bit about me by my social worker (including the main carer!) and we were able to clarify things. We let them know we’re very flexible on times so long as we know in advance, and main carer said she may need to move the morning call a little earlier because she sees someone else just afterwards and wants to get there on time. Okay with us 🙂

My social worker did get the timings a bit wrong (morning calls were meant to be 45 minutes, but are now an hour, and evening calls are meant to be 30 minutes or 1 hour depending on if it’s a “bath” night (we no longer have a bath. Boo!) or not but is now 30 or 45 minutes, but we’ll work with that now and we can change them if it’s not working right.

When the paperwork carer was finished, the main carer wanted to get started. As I was already dressed and stuff, there wasn’t much for her to do except brush my teeth (as Johan is too scared to do it and I’m not able to, it had been a while) so she did that then we chatted a bit longer. In the end we had to remind her several times that she had another client to go to for 12pm (only around the corner, but she kept chatting longer). She understands that I might not always be up for talking and that’s okay with her. She did listen to what we say and wants to work with us, and says she looks forward to being here. She comes back tonight between 7.30pm and 8pm, and I’m actually looking forward to it 😀

It has been a very good day. The carer situation seems a lot better than than the last one, and they understand our requirements and are quite happy with them. The doctors went really well and according to Johan the other doctors he has seen there are really nice as well. We’re on the way to getting Johan the help he needs and I feel like they will help me if I need it. I got to go shopping and go on a bus and though I’m in bed now I’m very very happy. We’ve also bidded on a tiltable wheelchair on eBay which ends tonight and if I win that going out should be even easier (my friend Elmo found it for me- he’s awesome).

*Penguin Flaps*

Danni

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

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 :P). 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.