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 ). 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 ), 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 ).
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 )