Yesterday I blogged about what M.E is. The post was a lot more popular than I was expecting, so thank you Today I’m blogging about how it affects me.
I have quite severe M.E. I don’t think of it as severe, but when I look at the different scales and such that’s where I’m normally placed. I am mostly bedbound, and for now completely housebound. I’ve been unable to walk at all since January 2011, so have to use a wheelchair when I do get out of bed. I used to be able to crawl but I don’t have the strength in my arms to do that any more. I am completely reliant on other people (normally Johan) to look after me because I’m unable to do it myself. If Johan goes out of action for whatever reason, I’ll be placed in a care home.
I have a lot of symptoms, most of which I listed in yesterday’s blog post. The biggest ones for me are muscle weakness, muscle spasms and pain. The muscle weakness means I am very weak- I struggle to hold normal cutlery as they’re too heavy and repetitive actions such as feeding myself are very painful and eventually impossible. I have muscle spasms in lots of different muscles. Some are annoying, some are very painful (especially the ones in my back or chest for some reason), some are very irritating (my bladder spasms mean I can constantly feel like I need the toilet when I don’t, and sometimes make me incontinent), but the worst ones are the ones in my hands and arms. If I try to hold and use cutlery or a pen, within a few seconds the muscles spasm, which is very painful and often means I drop the item. This means my hands are basically useless for anything that involves holding stuff for more than a few seconds. Luckily typing doesn’t involve holding anything and although it’s painful it’s less so than most other things so I continue to do so. If I can’t type normally then I can use my finger to swipe along the on screen keyboard on my tablet or phone to input text, which is slower but requires even less energy (and can be easily done when lying on my side).
As my hands are mostly useless, I require help with most self care tasks. This means things like washing, dressing and eating all require help from someone else. If my hands are being particularly bad then I’ll need someone else to place my medication in my mouth for me as because I can’t hold it or get my it to my mouth myself. I drink using a Hydrant which has a tube I put in my mouth, which I can manage independently nearly always. Holding things between my thumb and index and middle finger doesn’t trigger the muscle spasms so long as the item isn’t heavy and I do it right, so I try to eat with my fingers when I can (though the repetitive motions means sometimes I get very tired before I’ve finished and will require someone else to help me finish). I try to be as independent as I can as I hate accepting help, but I’ve learnt if I push too far when I’m not well enough I just get worse in the long run, losing what little I can do.
I am mostly bedbound. I have to spend the majority of the day lying down as being propped or sat up too long makes me even more exhausted and ill. During a relapse I am completely bedbound and unable to sit up at all, but at the moment I’m trying to build back up the amount of time I spend sitting. When I can sit up I like to go on my computer to play World of Warcraft, which also works as a distraction from how ill I feel and the pain I’m in. Luckily my computer chair reclines so I can sit in it for a while. I also use the commode by my bed independently most of the time, which I am grateful for (as our toilet is 110cm away from the cistern I cannot use it at the moment, but that will be fixed in a few weeks). Sometimes I’m able to stand to transfer, sometimes I’m not- and often I don’t find that out until I’ve fallen.
When in bed I spend most of my time on Twitter, checking emails or reading blogs. I also like to play Draw Something. For this I use my ASUS Eee Pad Transformer, which is a tablet with a keyboard dock. Most of the time I use it without the dock, but when I’m typing long blog posts such as this one it is quicker to use it. My tablet means that I can communicate with my friends easily, and is a good distraction most of the time. I am very lucky to have it (I needed a loan to buy it, but I have no regrets).
The pain is constant and severe, in most of my muscles and joints. I also have a sore throat, a headache and abdominal pain all the time. Luckily tramadol (a synthetic opiod painkiller) takes the edge off it when it’s my normal levels of pain, which means I’m able to do what I’m able to do. I also take ibuprofen which helps a bit with the headache and sore throat, but not massively and as I have to eat first it doesn’t get taken as much as the tramadol. Without the painkillers the pain is unbearable.
When I was able to go out (before the recent relapse) I used a harness to hold me in my wheelchair, as my back isn’t strong enough to hold me in a sitting position myself, and if I tried it would make me very ill. The last time I went out I wasn’t well enough to hold my head up, which was very uncomfortable. I am hoping to get a more supportive wheelchair from the NHS, possibly a powerchair, which would increase my independence a lot.
Fatigue is a big issue, though not as big as some of the others. At the moment I am sleeping lots- more than 12 hours at a time is usual, and often napping during the day as well (for example, last night I slept for 13 hours before pain woke me up, and since then I’ve had one nap, and will probably have another before sleeping for the night tonight). Sleep doesn’t make me feel any better, but I feel worse without it. Sometimes my pain levels are too high even with painkillers to let me sleep so I’m awake all night, often dropping off with exhaustion the next day. The fatigue itself feels ill.
I’m constantly nauseous. Most of the time I manage this by sucking on mints, but when it’s really bad or I’m vomiting I take cyclizine to control it. It works, but makes me even more exhausted and often puts me to sleep, so I avoid it when possible.
I have irritable bowel type symptoms, often going from constipation to diarrhoea and back again, along with abdominal pain and often not wanting to eat (which nausea doesn’t help). Because of this I was losing weight very quickly, but I think it’s slowed down a bit now so I’m trying hard to keep my weight at a healthy level (before I had M.E. I’d been obese due to psychiatric medication side effects). Sometimes I can only manage food that is soft or easy to chew, and at times Johan has to feed me as I’m too exhausted or my hands are being too silly.
Due to how ill I am, I only have a proper body wash about once a week, sometimes less. As this is exhausting, I need to rest a lot afterwards, but it does make me feel more human. Changing nightclothes happens about twice a week, and sometimes I can use babywipes to try and keep the smelliest areas clean.
I’m very sensitive to touch, sound, smell and light. I was already sensitive due to being autistic but the M.E. makes it worse. This means I have to be careful what toiletries I use (I’ve found ones that smell like food are very agreeable), I cannot have as many cuddles as I want, I can’t wear all my clothes (jeans are definitely out), I often need sunglasses if it’s too bright, and some noises such as the doorbell, the fire alarm or anything too loud makes me feel horrendous, so I have ear plugs and ear defenders (sometimes worn together). Johan is not allowed to use his favourite keyboard for his computer because it is too loud.
I also lose the ability to speak randomly. Some of that is because of autism, but it happens a lot more since my M.E became severe. I have brain fog (memory problems, concentration issues, word finding problems, feeling like my brain just doesn’t work right). If there’s any mistakes in my blog posts, brain fog is probably to blame.
If I do more than my body is capable of, I get extra symptoms. I start vomiting, I get temporary paralysis in my limbs (and sometimes my entire body), and my body shakes and jerks, which can be violent enough to throw me off the bed or out of my wheelchair (with the seatbelt on). I also get an increase in pain and other symptoms. Those are immediate. It also means I become worse overall.
The effect my M.E. has had on my life is profound. I had to give up college completely as I was just too ill to get there and too ill to do the work. I missed my best friend Colin’s wedding as I was too ill to go. Holding a conversation makes me very ill so I have to limit that and means I often can’t have visitors. I can watch some television on good days, but I’ve had to give up on some of my favourite television shows (House, NCIS, Glee, The Big Bang Theory) as I’m unable to follow them anymore. I can play some World of Warcraft when able to sit at my computer, but I’m too ill to raid with my guild and it takes me a long time to do even the simplest task in the game. I used to love reading books, but I no longer have the concentration to do so (that is something I never thought I’d give up). Being reliant on other people for almost everything is pretty depressing. When Johan needs a break, I go into a care home (which normally makes me worse, as they’re noisy and I have to explain things over and over again, when Johan is pretty good at guessing and predicting what I need).
I am very grateful for what I can do. My friends on Twitter keep me sane, and my other friends have been very understanding. Johan is amazing, and does everything he can to make me feel better. I live in an area with decent help for people with M.E. (the CFS clinic team visit me at home and I have a very good consultant who specialises in M.E) and nearly everyone I know believes in M.E, accepts how ill I am and if they can try to make it better for me (one person has decided I’m just attention seeking, which is very hurtful because they have had M.E. themselves, but that is due to their mental health problems as no-one is allowed to be more ill than they are). The staff at South Tyneside College (especially at Interface, my Computing lecturer Simin and my personal tutor Louise) did everything they could to make it accessible to me, which meant I was able to get an A in AS Computing despite being pretty ill at the time, and if I hadn’t have continued to decline I would still be there.
My M.E. reached its worst in December 2011 when I relapsed and became exceptionally ill (very severe M.E- at one point I was unable to eat or drink at all because I was too weak, nor was I able to able move or communicate at all, and the pain was like nothing I’ve experienced before). Since then it has slowly been improving, though I relapsed again a few weeks ago when I caught a cold (though not as badly as in December). I’m hopeful that by continuing to listen to my body, and trying not to do too much I’ll be able to keep improving and will be able to do more for myself and start going out again (although that normally occurs in the wrong order- I’m able to go out again before I can do more for myself ).
The CFS clinic normally do Graded Activity Therapy (where you find your baseline, don’t do more than that for a bit, then very slowly increase the amount of activity you do) but as I’ve been too ill to do it (just monitoring my activity was making me more ill) they are just supporting me with my own method of listening to my body, suggesting a few things to try and help, and are available if I have any questions or need to see them. They’re going to see me at home every 6-8 weeks while I’m too ill to go to the clinic they hold in Gateshead (they’re based in Sunderland). I was seeing my consultant every 3 months, but haven’t been since last year due to how ill I’ve been, but I can contact him if I need to. My old GP was brilliant, and the new surgery seems just as good, as although I’ve yet to meet a doctor there they’re quite happy to prescribe me my medication and are contacting the CFS clinic and my consultant to see how they can help me further.
The main thing though is I’m happy. Yes, I have a sucky illness and spend most of my time in bed, but I have my friends, I have Johan, I have my penguins, and I’m well supported so I’m happy.