"I find penguins at present the only comfort in life. One feels everything in the world so sympathetically ridiculous; one can't be angry when one looks at a penguin." – John Ruskin
Correction: I was at college on Monday, too ill to go in on Tuesday (and lost the ability to speak for much of the day), in on Thursday, then my limbs stopped working just before I got into my flat, which required Johan to lift me up the stairs then drag me into the flat, lift me onto my wheelchair then get me into bed, while I couldn’t move my arms or legs.
Luckily it was only an hour or two before I could move my arms again, and a few more hours before I could move my legs, but it made life very difficult while I couldn’t move them. For the first time, Johan had to wipe my bottom after I’d been to the toilet, which was something I was hoping he’d never have to do.
Since then, I’ve stayed pretty ill, though I did get my bath on Friday, and was able to sit up for a couple of hours on my computer. I know this is more functioning than a lot of people with severe ME, but still, this is worrying if I want to be able to continue at college, as my body is really protesting it.
I can’t rest at college as I can’t lie down.
Sitting up is now classified as high energy. It makes me feel really ill, and get a lot of unpleasant symptoms, really quickly. To do college, I have to manage it for 2 hours travelling each way, on top of my time at college. It’s often more than 6 hours in a day.
It’s too much.
So, what to do.
I could continue being stubborn, and keep going into college. Either I’ll stay as I am at the moment, or I’ll get worse. Worse means not being able to get out of bed at all, more instances of not being able to move limbs, more losing speech, and maybe new things that I’ve not experienced yet. That’s on top of the tiredness and pain getting a lot worse. I’m already struggling to cope with it, though I’m able to try and deal with it using positivity and plenty of painkillers.
I could give up college. That would mean never being able to finish A Level Computing, as South Tyneside College has discontinued it, and no other college in the area does it. I’m good at it.
Of course, getting the A Level isn’t necessary to go to uni or get a job. I can get there through other methods. It helps a lot though, and it fits my style of learning.
I’m not going to decide now. I’m going to give it another week, talk to my Computing lecturer, and see how things go. I’ll report back next Friday.
The plan was to go to sleep earlyish (around 2am), so I’d be able to wake up before the afternoon. That didn’t exactly happen, as my hand and arm decided that they were going to be too painful to sleep.
I have given up now, taken some painkillers, tried (and failed) to distract myself in World of Warcraft (turns out I use my right hand a lot to play it :-p) and am now writing this.
Despite me being up all night, my M.E. isn’t playing up too much. I don’t have the massive leg/arm jerks that launch me off the bed. Instead I get little ones that last only a few minutes, rather than a few hours. Much more manageable. The pain is normally bearable, and if it’s not, painkillers normally bring it down to that level. I’m normally awake 12-14 hours a day, which is great. I’m normally out of bed a few hours a day. The best thing is, this is without causing relapses. I do have to spend more time in bed if I’ve gone out, or had a cold or a tummy bug, but that’s okay.
I still can’t walk, really. I can sometimes take a couple of steps across the living room, but by the second step I’m starting to fall, so I only do it to get to my bed when I feel I can (I can cross the living room in one or two steps normally). This is because I think it’s important for me to test myself on what I can do, so I don’t get deconditioned from not walking, and so I don’t forget how to.
Standing up happens sometimes. Again, it’s normally me testing myself, often when I’m trying to use the toilet or something. Often I can’t do it at all, and that’s okay as well. I’m trying to listen to my body- push it a little bit, but not so much I relapse. It seems to be working.
The carers is still an issue. Most of them now I’m fine with. My favourite carer is absolutely amazing, and I get her most mornings and the occasional evening. If I could, I’d steal her to be my carer all the time. She can do in 45 minutes what it would take me when well a week to do 🙂 There are others that I get on with quite well, like the one who came and did my bath last night. I didn’t find her as easy to get on with as favourite carer to begin with, but I’m now quite comfortable with her helping me and things. To be honest, I wouldn’t mind stealing her if I couldn’t have favourite carer, as she’s lovely and does things, just maybe not as quickly as favourite carer :-p
There are other carers though that make me very anxious, just by them being here. One of them makes me outright panic just by being on the rota. So far, I’ve manage to spot it and cancel whenever she’s on it. There are some that I’m okay with coming to help with just getting changed and housework, but who make me really anxious when they help me with my bath. I don’t know why that is- I’m about as unembarrassed about my body as I can be (I’m quite happy to be naked in front of other people, including males, though I’m aware now that they may not be (and it took me until I was over 16 to learn that…) so I try not to be) though I do get a little self conscious when washing myself, more because I always feel I’m doing it wrong when I’m being watched :-p That’s easily solved though by asking the carer to leave the room for a few minutes while I do so (I’m too big to drown in the bath once I’m in safely). I dunno- maybe I’m picking up on anxiety on their part?
As my most recent Project 365 showed, I have received my Blue Badge! This means whoever is driving me places (such as Colin or staff at college) will be able to park in disabled bays without bother, and won’t have to pay parking costs a lot of the time. I’ve also got my application in for a disabled bus pass, which will give me a lot of freedom when I’m well enough for day trips, as I’ll be able to use it to go into Northumberland without paying the earth. Prudhoe watch out :-p
We’re going to Leeds next month as it’s my father-in-law’s 70th birthday. He’s nearly as old as my nana :-p I still need to book train assistance, but the hotel is booked for two nights, and I’ve paid for the train tickets. Staying two nights should mean less pressure on rest and things, and I may even get to see something while I’m there (other than Johan’s family, of course).
I’m hoping some of my other parcels arrive today. I’m expecting some shoes, some egg cups, and some micro USB cables. I’m also waiting for a Wreck This Journal and a purple Blue Badge holder, but they may take a bit longer to arrive. I also need to do an Asda order, or at least a shopping list so that Johan can go and get some items. I really fancy watermelon.
World of Warcraft has been a bit iffy. I’m still enjoying it, but I’ve had a couple of bad groups in there that don’t help my very low confidence in my healing abilities. I know theoretically that I’m actually not that bad at healing, but it doesn’t stop me being knocked everytime I get yelled at. Today it was because I didn’t feel comfortable trying to use my crowd control (mind control and shackle undead) as everytime I try to use it, I die. I even did today. We did have a DPS shaman and druid in the group, so it wasn’t like we didn’t have any, but they kept insisting. I ended up dropping group because it was making me that anxious. I felt really guilty afterwards, especially since I’d queued with a guildie (the druid) but they said they understood why I’d dropped group. The guildie covered for me by saying I had a raid :-p I have killed some raid bosses though, so I’m happier with that.
Since I finished college, I’ve noticed I’ve had more concentration for things like television shows and reading children’s books. It’s still not great and I’m not taking much in, but at least I can do it now without my mind wandering every few seconds (it’s every few minutes instead). I’m going to watch the Harry Potter films in time for the last one coming out. If I watch one or two a day, I’ve got plenty of time. I can even watch them from bed, so use less physical energy 🙂
I’m still majorly struggling to write emails, comments and letters. I’m also overwhelmed by Twitter and Facebook, though I still look at them. I’m also on Google+, which is cool 🙂 I don’t know if it’ll replace Facebook, as there aren’t that many people using it yet, but it’s fun to mess with at the moment.
Oh, I also am very very slowly starting to use the phone again 😀 This is a big thing, as my phobia got so bad I wasn’t even able to talk to people I know very well on it without a panic attack. I’m starting with scripted calls, but will hopefully expand that as I get more used to it. I’ll probably never be fully comfortable with it, but being able to use it if I need to would be awesome.
I’ve also been very naughty and taken myself off my antidepressant. I don’t think it was ever doing anything for me, other than making me sleep. I’ve not noticed a decrease in mood since coming off it, though both Johan and I are monitoring it closely. I’m also slightly more alert when I get up, which is a bonus 🙂 I’m not coming off the antipsychotic yet, as that was doing a lot for me and I want to see how things go. At some point I should probably tell my doctor I’m not taking the antidepressant…
Project 365 is going well, though I’m starting to run out of things to take photos of in my living room. I don’t get much in the way of interesting post unless I buy something (I do get the odd bill though) so I’m not sure what I’ll be photographing soon. It’s been fun though, and it’s been a way to blog daily without it feeling like a big effort.
Johan’s not doing so great though 🙁 His anxiety is really bad, as is mine (it was before coming of the antidepressant- it’s been no worse since then) and they seem to be feeding each others, which is bad. He’s also struggling to find the motivation to do things. His emergency referral since being in hospital still hasn’t been completed though, which is getting ridiculous. I’m worried he’ll end up that ill again (especially since the stress of the carers isn’t helping) though he’s adamant that he’s not going back into hospital. I think it may be time for me to start chasing things.
The pain has now eased enough that I may be able to sleep, so I think I’m going to leave it there.
In January I reported my change in circumstances to the DLA people, as by that point I was unable to walk outside at all. They decided to ignore everything I said in the letter, and kept my original award of higher care, lower mobility. While I was waiting to hear from them, I went from being able to take a few steps to not being able to walk at all, so I felt that I should be entitled to higher mobility (for those who are unable, or virtually unable, to walk). I put in an appeal, and they contacted my GP, consultant, then sent out an evil ATOS doctor last week to do a medical. It must have convinced them, as on Friday I received a letter saying my appeal has been stopped as they’d changed their decision and awarded me higher care, higher mobility 😀 My reasons for having higher care have also been changed from mental health (which is much improved, if not completely fixed) to physical care needs, which is more accurate now.
The back payment came in on Saturday, so I sent Johan out to buy my new television. It does iPlayer and YouTube and stuff, as well as being a million times better than my old one, which is nearly dead. It was less than £300, which for a 32″ LCD with internet is extremely good 🙂 It’s also nice being able to operate it from bed 🙂
What else has happened? I’ve still been really ill. I now spend most of the day in bed (about 20+ hours, sometimes nearly 24) at least four days a week. My sleep is a bit all over the place- little things stop me getting to sleep for hours after my meds would normally knock me out, then I struggle to wake up in the mornings (though to be fair, that’s not unusual).
I had my Computing exam. It went better than expected, so I’m hoping for at least a B, despite not being able to remember anything I’d been taught since Easter. I did the exam in the first aid room, but the bed was too high for me to use it. I took some beanbags but ended up not using them either, as by the time I needed to lie down I only had 3 short questions left, so I answered them, checked my answers, printed it off and went and lay on the recliner in Interface for an hour, napping for quite a bit of it. We stayed in a hotel near the college the night before so I didn’t have to worry about the journey in (we got a taxi from the hotel) and it was nice, though I couldn’t get my wheelchair into the bathroom, despite it supposedly being a disabled room. I crawled instead, and let them know when we were checking out.
Apart from that, I’ve not been in college as much as I wanted to. It’s the last week next week, and there’s the leavers ceremony, prom and things. I want to go but will have to see how my health is.
I did manage to make it to Flamingo Land with the college on Friday though 🙂 First of all everything that could go wrong, did. I struggled to get up after not being able to sleep until 1am because there were people talking very loudly outside. We were slightly late leaving because we forgot something, so we missed the first bus by about 30 seconds. The second bus wasn’t accessible, and we got on the third but I reacted badly to a woman’s perfume so had to get off at Blaydon. We got on the forth bus, but were running really late by then. We missed the metro by less than a minute, so ended up emailing the college to let them know we would be late. One of the support staff picked us up from the metro station, which was good 🙂 Then the lift on the coach wasn’t working properly because the road and path are uneven there. It took 25 minutes until I was lifted onto the lift so I could actually get on the coach 😛
After that though everything went well. I got a disabled band and Johan got a carer band, so we didn’t have to queue for the rides. I went on the first roller coaster to see how I’d manage with it, and it turned out that because they had good back support and I don’t get scared I could manage them fine, so I went on a few 🙂 I also got to see the penguins, which was awesome. I’ve been tired since, but overall I’ve not been much worse than I was anyway, so it was more the long day that did it than being at the theme park itself. Luckily it was pretty quiet there.
I went to little Martin’s birthday party on Monday. He’s getting so big 🙂
I am having problems communicating beyond just Twitter and Facebook at the moment. Instant messenger is exceptionally difficult, even with friends, and emails and letters are pretty much impossible to write. I keep losing speech, which makes communicating with the carers difficult when it happens. I am currently creating an Android app that should help with that at least.
I’ve also started project 365. I’ve posted the first two days to Facebook, and I’ll copy them over here in a minute. I’m hoping that taking a photo everyday, no matter how crappy, will give me something to do 🙂
So, I failed with the 30 Day Song Challenge. I’m currently not well, and have spent the last three days in bed (though I did manage to get a bath today, which helps make me feel a bit more human at least). I can’t sit up for more than a minute at a time right now without feeling really dizzy and faint, and having really bad pains in my back.
Anyway, it’s International M.E. Awareness Day today, which is part of M.E. Awareness week. Last night I recorded a video about it. How I am in the video is my normal “bad day”, if that makes any sense. It’s not the worst I’ve been, but I can be better.
1. The illness I live with is: ME/CFS – Myalgic Encephalopathy/Chronic Fatigue Syndrome
2. I was diagnosed with it in: October 2010
3. But I have had symptoms since: September 2009 (or August 2009, if you include the Swine Flu I had first)
4. The biggest adjustment: Slowly going from someone who was fiercely independent, to having to accept help from Johan, and then from strangers.
5. Most people assume: That if I can do something once, I’ll be able to do it again or on another day. The illness is so variable that it’s hard for me to make plans, and I know that it can upset people when I say I can’t do something. Luckily, up to now most people have accepted I’m ill, which I know is difficult for other people with M.E.
6. The hardest part about mornings are: Actually waking up, and then staying awake for any length of time. I’m also often in a lot of pain first thing in the morning so I can’t judge if I’ll be able to get up that day. Having to get up when my carers arrive (if I can) is also difficult.
7. My Symptoms: Constant flu-like exhaustion, severe pain in my muscles and joints that are only partially helped by strong painkillers, constant headache and sore throat, muscle spasms- mostly in my hands and legs but also elsewhere, temporary paralysis in my legs and sometimes my arms (for a few hours), brain fog (short term memory problems, concentration issues, muddling words), muscle weakness that is so bad that I can’t walk or hold a pen, intolerance to light, noise and touch.
8. A gadget I couldn’t live without is: My computer, a laptop and HTC Desire. It means I can still do stuff when stuck in bed or my flat, and I can still attempt to study for my AS Level. Although not a gadget, my wheelchair is also brilliant as it means I can go out on good days.
9. The hardest part about nights are: Waking up multiple times from severe pain, and being too weak to be able to take any painkillers. Also needing the toilet, as I can’t get there.
10. Tablets a day:High dose (20,000 units) vitamin D for severe vitamin D deficiency three times a week, 50mg quetiapine and 50mg tramadol at night for my previous mental illness (which also help me sleep), 30-60mg nefopam up to three times a day for pain, 400mg ibuprofen up to three times a day for pain, 30mg lansoprazole every morning to protect my stomach from the ibuprofen.
11. Regarding alternative treatments: None so far. There are some I wouldn’t try, but I wouldn’t rule most out if I could access them and I thought they would help.
12. If I had to choose between an invisible illness or visible I would choose: Hard one 😛 I had an invisible disabilty anyway (autism/dyspraxia), so M.E. is actually slightly more visible, as I use a wheelchair. I’d go visible if I have to choose, as it is more obvious.
13. Regarding working and career: Not happening right now 😛 I attend college when I’m able to, doing an AS Level in Computing, which only works because I get a lot of support and understanding at college. I’m wanting to go to university to do Computing and Networking, and then become a network administrator, but it may be that I have to delay it. I also have a backup job option of being a computer programmer if I’m not well enough to do network administration, because I can do that from bed 😛
14. People would be surprised to know: Despite all the moaning and grumbling I do online, in real life I’m normally quite positive and happy 🙂 I also feel that being physically ill is a lot easier to deal with than being mentally ill (at least for me). The moaning and grumbling online is because I’m still not used to being this ill, and change is bad 😛
15. The hardest thing to accept about my new reality has been: That I need so much help with things that when Johan had to go into hospital, I had to go into a care home. Also, not being able to be intimate with Johan, as any touch is too painful.
16. Something I never thought I could do with my illness that I did was: Recover from depression 😛 It’s probably not due to being ill (though the enforced rest helped), but I would have thought that the illness would help keep me depressed.
17. The commercials about my illness: Don’t exist. Which is wrong.
18. Something I really miss doing since I was diagnosed is: Reading long books in one sitting. Going out whenever I fancied it, rather than only when I’m well enough. Being able to meet up with friends. Being able to manage a full week at college. Being able to stay awake for more than a few hours at a time.
19. It was really hard to have to give up: Being independent.
20. A new hobby I have taken up since my diagnosis is: Napping during the day 😛 Seriously, I’ve not really taken up any new hobbies, but I appreciate the one I have continued with (playing World of Warcraft) a lot more.
21. If I could have one day of feeling normal again: I’d probably just go to college, without my wheelchair, and spend time with my friends there and go to all my lessons 🙂 Also spend time with Johan afterwards 😛
22. My illness has taught me: That good friends will stick with you no matter what, and there are plenty of people who are willing to help, even in small ways such as opening doors and things. There are also people who don’t like moving from the wheelchair bay on the bus, which can be frustrating.
23. Want to know a secret: To manage college, I’ve basically given up everything else. I don’t even play World of Warcraft that often any more. Also, my main rule for whether I’m well enough to go into college is can I keep my eyes open and sit up? If so, I go in. This is probably not doing my health much good, but so long as I can get through my exam it’ll be worth it.
24. But I love it when people: Offer to help, with specific things. Open questions are very difficult for me to deal with, so things like “do you need anything?” or “anything I can do?” makes me panic. Also, when friends understand if I don’t reply to messages, or don’t make contact that often.
25. My favourite motto, scripture, quote that gets me through tough times is: It’ll be okay in the end.
26. When someone is diagnosed I’d like to tell them: To listen to their bodies, accept help if it’s offered, and rest. Also, there are no guarantees with this illness, so don’t worry too much if you get worse- there’s a good chance you’ll get better as well. It’s also very individual- what happens to someone else may not happen to you- which includes treatments and things.
27. Something that has surprised me about living with an illness is: Just how variable it can be, even through the day. Also that even little things can cause a big relapse, and that you just have to go with it.
28. The nicest thing someone did for me when I wasn’t feeling well was: Visited me in the care home 🙂 It made me feel much better. Also friends who are understanding and try and make things easier for me.
29. The fact that you read this list makes me feel: Happy that you’ve maybe learnt a little bit about this illness 🙂 Also amazed you’ve managed to read this far 😛
30. Something I want people to take away from this: M.E. is a real, physical illness. It can vary a lot- one day someone with it may seem perfectly fine, but underneath they may be struggling, and if they do too much they could end up unable to get out of bed. It’s also variable, so some people my have it mildly, whereas others may be so severely ill they have to stay in a darkened room, be tubefed, and cannot tolerate any noise, light or touch.
So, I fell behind on this. On Monday I just forgot, being ill hasn’t helped either (having to spend an hour on the bathroom floor because you don’t have the energy to get up after falling and your husband is so asleep he can’t hear any phones is not my idea of fun). Anyway, this will catch me up.
Day 09 – A song that you can dance to
Macarena – Los del Rio
This one was quite hard, as being ill means that I can’t really dance anymore. I chose this because I at least know all the dance moves, even if I can’t actually do it at the moment.
Day 10 – A song that makes you fall asleep
I have a problem. I don’t have any songs that make me fall asleep. Instead, the song I sing to small children to help them fall asleep!
Twinkle Twinkle Little Star
Day 11 – A song from your favourite band
Imaginary – Evanescence
I don’t have just one favourite band, but Evanescence is one, and this is one of my favourites by them.
I will try to get tomorrow’s out on time. I’m also hoping to write a full blog post soon, when my health allows.