The plan was to go to sleep earlyish (around 2am), so Iād be able to wake up before the afternoon. That didnāt 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. isnāt playing up too much. I donāt 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 itās not, painkillers normally bring it down to that level. Iām normally awake 12-14 hours a day, which is great. Iām 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 Iāve gone out, or had a cold or a tummy bug, but thatās okay.
I still canāt walk, really. I can sometimes take a couple of steps across the living room, but by the second step Iām 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 itās important for me to test myself on what I can do, so I donāt get deconditioned from not walking, and so I donāt forget how to.
Standing up happens sometimes. Again, itās normally me testing myself, often when Iām trying to use the toilet or something. Often I canāt do it at all, and thatās okay as well. Iām 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 Iām fine with. My favourite carer is absolutely amazing, and I get her most mornings and the occasional evening. If I could, Iād 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 šĀ There are others that I get on with quite well, like the one who came and did my bath last night. I didnāt find her as easy to get on with as favourite carer to begin with, but Iām now quite comfortable with her helping me and things. To be honest, I wouldnāt mind stealing her if I couldnāt have favourite carer, as sheās 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 sheās on it. There are some that Iām 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 donāt know why that is- Iām about as unembarrassed about my body as I can be (Iām quite happy to be naked in front of other people, including males, though Iām aware now that they may not be (and it took me until I was over 16 to learn thatā¦) so I try not to be) though I do get a little self conscious when washing myself, more because I always feel Iām doing it wrong when Iām being watched :-pĀ Thatās easily solved though by asking the carer to leave the room for a few minutes while I do so (Iām too big to drown in the bath once Iām in safely). I dunno- maybe Iām 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 wonāt have to pay parking costs a lot of the time. Iāve also got my application in for a disabled bus pass, which will give me a lot of freedom when Iām well enough for day trips, as Iāll be able to use it to go into Northumberland without paying the earth. Prudhoe watch out :-p
Weāre going to Leeds next month as itās my father-in-lawās 70th birthday. Heās nearly as old as my nana :-pĀ I still need to book train assistance, but the hotel is booked for two nights, and Iāve 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 Iām there (other than Johanās family, of course).
Iām hoping some of my other parcels arrive today. Iām expecting some shoes, some egg cups, and some micro USB cables. Iām 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. Iām still enjoying it, but Iāve had a couple of bad groups in there that donāt help my very low confidence in my healing abilities. I know theoretically that Iām actually not that bad at healing, but it doesnāt stop me being knocked everytime I get yelled at. Today it was because I didnāt 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 wasnāt like we didnāt 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 Iād queued with a guildie (the druid) but they said they understood why Iād dropped group. The guildie covered for me by saying I had a raid :-pĀ I have killed some raid bosses though, so Iām happier with that.
Since I finished college, Iāve noticed Iāve had more concentration for things like television shows and reading childrenās books. Itās still not great and Iām not taking much in, but at least I can do it now without my mind wandering every few seconds (itās every few minutes instead). Iām going to watch the Harry Potter films in time for the last one coming out. If I watch one or two a day, Iāve got plenty of time. I can even watch them from bed, so use less physical energy š
Iām still majorly struggling to write emails, comments and letters. Iām also overwhelmed by Twitter and Facebook, though I still look at them. Iām also on Google+, which is cool šĀ I donāt know if itāll replace Facebook, as there arenāt that many people using it yet, but itās fun to mess with at the moment.
Oh, I also am very very slowly starting to use the phone again šĀ This is a big thing, as my phobia got so bad I wasnāt even able to talk to people I know very well on it without a panic attack. Iām starting with scripted calls, but will hopefully expand that as I get more used to it. Iāll probably never be fully comfortable with it, but being able to use it if I need to would be awesome.
Iāve also been very naughty and taken myself off my antidepressant. I donāt think it was ever doing anything for me, other than making me sleep. Iāve not noticed a decrease in mood since coming off it, though both Johan and I are monitoring it closely. Iām also slightly more alert when I get up, which is a bonus šĀ Iām 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 Iām not taking the antidepressantā¦
Project 365 is going well, though Iām starting to run out of things to take photos of in my living room. I donāt get much in the way of interesting post unless I buy something (I do get the odd bill though) so Iām not sure what Iāll be photographing soon. Itās been fun though, and itās been a way to blog daily without it feeling like a big effort.
Johanās not doing so great though šĀ His anxiety is really bad, as is mine (it was before coming of the antidepressant- itās been no worse since then) and they seem to be feeding each others, which is bad. Heās also struggling to find the motivation to do things. His emergency referral since being in hospital still hasnāt been completed though, which is getting ridiculous. Iām worried heāll end up that ill again (especially since the stress of the carers isnāt helping) though heās adamant that heās 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 Iām going to leave it there.