"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
I’m not coping at the moment. A combination of toothache and panic over things, and feeling like I’m useless. I’m aware my brain is being illogical, I just don’t know how to deal with it.
New antisickness tablets put me to sleep. I guess that’s one way of dealing with the nausea, but it’s not exactly ideal. Messed up sleep is now completely messed up.
At the moment, I am a generally positive person. This may not come across much in my blog posts, mostly because I’m using them to record how my M.E. is treating me, and at the moment it’s making me rather ill. I have been talking to friends, and one said she felt guilty as she’s improving while I’ve been getting worse. The last thing I want is to make people feel guilty about getting better, just because I’m not. So here’s a list of the positive things in my life at the moment.
There are probably other important things that I’ve forgotten, but overall I am enjoying life, even if it’s not exactly what I want it to be.
Saturday night I started experiencing some strange chest pain. It felt like someone was stabbing me every time I breathed. As the pain continued to get worse, my normal dose of tramadol wasn’t touching it, and because it was unusual for me, we called an ambulance (we would have called NHS Direct but as it was chest pain they would have just called an ambulance anyway).
The ambulance men were brilliant. I’ve no clue what they look like, as I was having a bad day, was very noise and light intolerant, and was wearing my eye mask and ear defenders (this is also why I’m calling them ambulance men, as I don’t know if they were paramedics or technicians or one of each). They understood why we called them, and also realised that going into hospital would not be a good idea unless necessary, so they performed all the tests to rule out anything serious. They asked questions about my M.E. and autism, reassured me as appropriate (both that I was okay and that it was right to call them out) and also cracked a few jokes (then told me not to laugh as it made the pain worse).
Once they’d done everything they could, they called the urgent care team (who are nurses) to ask them to come out to see if they could figure out what it was and how to deal with it. They checked to make sure I didn’t have a chest infection or anything like that, and concluded I’d probably pulled a muscle in my chest at some point, and told me to take more tramadol (double my prescribed dose) as they couldn’t prescribe anything stronger themselves. All very useful, and the extra tramadol knocked me out so I was at least able to sleep through the pain.
Johan coped remarkably well on Saturday night, but unfortunately he wasn’t doing overly good mentally. Sunday I spent a lot of time trying to reassure him, and he was unable to distract himself as he normally does. On Monday, I went with him to the MetroCentre as mentioned in the previous post, even though I wasn’t well enough, because he wanted to go and couldn’t do it alone.
Tuesday we both saw the doctor. He swapped my prochlorperaine to a form that dissolves next to the gum, as my nausea and vomiting got so bad I couldn’t keep my tablets down. It works well, except on days where I wake up with severe nausea and end up vomiting before I get the chance to take it. I’ve also been given permission to double my tramadol as I need to, which is useful.
For Johan, he took him off sertraline as the side effects weren’t helping things, and put him on mirtazapine instead. Previously Johan has said he didn’t want to go on it because of the weight gain, but he didn’t protest, and I wasn’t going to as if any medication is going to help him, that one will. He also referred him to the crisis team, despite us not being too happy about it, because of how quickly he’d deteriorated and his risk of harming himself.
While in the chemist waiting for our prescriptions, I picked up a few items I wanted to get (makeup brushes, wipes and gloves to make cleaning the commode and bed pan easier, my favourite shampoo and conditioner, some new hair bobbles as most of mine had broken). We also went to the bakery to get some lunch and to another shop for some sweets on the way back, as I like to take advantage of being out when I can. He was still bad on Tuesday evening, but he fell asleep not too long after taking the mirtazapine.
Wednesday morning the crisis team came out. For once, they didn’t make things worse. They can’t see a role for themselves as most of Johan’s anxiety and depression is being caused by the problems with the carers, but they are also sending out some information about advocates for Johan as I’m not well enough to do it for him any more, and contacted my social worker in an attempt to see if he can fix things with the carers. Johan then fell asleep again (mirtazapine is very good for sleep, just sometimes it’s too good) and I dozed off not too long after, as the crisis team exhausted me.
My social worker turned up in the afternoon, to the surprise of both of us. Apparently Johan had been told, and he thinks he told me, but I had no record of it so either he was mistaken or my memory was being lousy :p The social worker realised it wasn’t a good time, so rearranged to come back the next afternoon. By the evening Johan was doing a bit better, and really craving sweet and sour chicken, so went out to the Chinese to get some. He also didn’t need anywhere near as much reassurance as he had been, which is making me think the sertraline was making things worse.
Thursday was a quiet day for me. I didn’t get to sleep until 5am because of sleeping in the afternoon and things being on my mind (which I tried everything to try and solve, including typing them all up, but it didn’t work). When I woke up I was very nauseous, and ended up throwing up before being able to take the prochlorperazine. I did apply some makeup, but took it all off because I didn’t like wearing it when being sick. My social worker arrived at 2.30pm with a woman from A4E, to talk about direct payments. It was fine, apart from being exhausting, and I was also able to tell him things still aren’t improving with the carers and ask about respite for Johan. Ended up falling asleep again afterwards, while Johan went to the MetroCentre (by himself) to get his iPod repaired, which they very kindly replaced for free. Woke up this evening, went on my computer for far too long to level Elisaveta (I got her to 82) then have been resting in bed and chatting to friends in IRC all night.
I have messed up my sleep patterns, but hope to get them back to normal over the next couple of days. We have no appointments until Monday (when Johan sees a psychiatrist) so will be able to work on it. I also still need to figure out my baseline for activities, and have a plan which requires buying large quantities of non-specific, pretty greetings cards. I’m also two weeks behind on Waterloo Road, and trying to get caught up on NCIS whenever I’m feeling well enough to watch a TV programme. Plenty of things to do, just not enough energy to do them.
(I have permission from Johan to talk about his mental health on my blog.)
Today I’ve had an enjoyable day. Woke up this morning, got washed, dressed, and hair done (in a French plait :D) when lovely Icelandic carer came, then fell asleep again until this afternoon. This afternoon I went on my computer for a short while, and have been reading twitter and blogs while chatting to Johan about things. This evening we went to the MetroCentre, where I had makeup applied and then bought it all in Boots, followed by buying chocolates in Thorntons and going to Nandos for a lovely meal with Johan. We came home, and Johan gave me a lovely bed bath then a massage.
All that is very nice, and though I’ll pay for the day out in a day or two, it was worth it.
So what on earth does this have to do with World Mental Health Day?
I’m lucky- apart from some anxiety issues, I no longer have any severe mental health problems (I did have severe depression and also some psychotic features such as paranoia and hearing voices). I’ve been mentally stable for over 18 months, and stopped taking the last of my psychiatric medications about a week and a half ago. I had been suffering from depression for nearly 12 years before that, so I am extremely grateful to have reached this level of recovery. If it weren’t for the M.E. there is no reason why I wouldn’t be either at university or in a job right now.
Johan, on the other hand, is not so lucky. He’s currently suffering from bad depression. His brain is telling him nearly constantly to hurt himself. He is getting thoughts of suicide. His mood has dropped a lot, over the last fortnight and especially the last few days. Going out this evening and giving me a bed bath were distractions for him, but he was unable to enjoy them as he would have done if he was not depressed. He has asked me to stop him going into the kitchen and to stop him taking my medications as he’s worried that he will hurt himself. I am very worried about him.
Tomorrow we both have appointments with awesome GP, at about the same time. My appointment will be for discussing how I’m getting on with the tramadol (pretty well- it takes the edge of the pain most of the time) and probably talking about having to call an ambulance out on Saturday night (I’ve probably pulled a muscle in my chest, and it’s nowhere near as bad as it was). I’ll talk about that more in another blog post.
Johan’s appointment will be tell the doctor how Johan is getting on mood wise. He was started on sertraline a couple of weeks ago, when we told the doctor his anxiety was getting worse. Johan at the time wasn’t admitting that he was getting depressed again, so I didn’t mention it to the doctor. The medication takes a few weeks to get working, and it’s been making Johan very lethargic among other things, so we’ll be telling the doctor that. We’ll also have to tell the doctor about all the things I mentioned before. I’m hoping that awesome GP will be able to do something to help, though I’m not entirely sure what. Johan, as he’s depressed, is convinced he’s evil, he can’t be helped, and that he doesn’t deserve help. I am aware that this is depression talking, as I used to to think the same way. I do think he can be helped, and will be as supportive as I can be to try and get him that help. It may be that he will need a short stay in hospital, as I am unsure of our ability to keep him safe. Hopefully it won’t come to that.
So there we go. Today, on World Mental Health Day, I’ve been not doing anything to try and raise awareness, but more trying to cope with the mental health problems that have been hurting Johan, while at the same time have been grateful for how mine has improved.
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.