"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.
Pain is probably my main symptom of M.E, though it’s not the most obvious. I don’t show it most of the time, but I’m in constant, severe pain. Lots of things can make it worse, and painkillers and other stuff tend to only help a little bit. Most of the time, I cope. Not very well, as it makes other things harder to deal with, but I can normally get around it and maybe even distract myself from it occasionally.
I can cope with different types of pain differently, even if they’re the same severity. I’m not sure why this is. I can deal with pain in my muscles and joints pretty well now. So long as I’m not moving them too much, and I’m not overstimulated, I can manage the pain with some tramadol and the occasional wheat bag/penguin. If I can cope with it, a hot bath also can help (normally it’s other symptoms that prevent me from having one, such as muscle weakness and dizziness). Headaches I can also manage okay, though if it’s a migraine I’ll need to cut off as much sensory input as possible. I have a constant sore throat but the pain isn’t normally too severe so that’s not too bad.
There are two types of pain that I really struggle to cope with. One is toothache/earache (I normally get them together). Even though the level of pain may be less than that elsewhere in my body, I can’t cope with it. Tramadol doesn’t help at all, though ibuprofen does a little bit. This pain is distracting, and I can’t do anything. It stops me sleeping and makes me want to scream. I would do pretty much anything to stop it. It’s mostly caused by one tooth that’s been bothering me for a year now, and hopefully it will be removed next month. Because of my other problems, I need it done under a general anaesthetic, but I’m desperate.
The other pain I don’t cope well with is abdominal pain, especially if it’s on the left hand side. Again, the pain may not be that bad compared to that in my limbs, but I have much less ability to cope with it. I’ll be curled up in a ball, preferably with a wheat bag/penguin, and I’m unable to distract myself from it. Luckily I don’t get it that much now (I was getting it from taking codeine or morphine) but when I do, I know about it. Luckily tramadol does tend to help this sort of pain, as does buscopan.
Now, how to explain this to my doctors…
Today I went to see my GP. It went okay, though during the appointment I found it increasingly difficult to sit up and eventually couldn’t manage it at all. I was strapped into my wheelchair so was still sitting, I was just bent over at the middle and couldn’t straighten up.
Johan took me home. Every bump was agony. I was crying it hurt so much. Then he had to get me into our flat. It’s upstairs. Johan dragged me up the stairs, with me being unable to help because I was too weak to move anything other than my head. At one point my leg jerked while he was trying to lift me, and I nearly kicked him down the stairs. He managed it, then lay me at the top while he fetched my wheelchair and stuff. He then had to lift me from the floor into my wheelchair, which was difficult as I was like a rag doll. It took a few goes but he managed it, and got me on my bed and my coat off. He even put my eye mask on for me which was wonderful, as I couldn’t move my hands.
After sleeping for a bit I woke up feeling really ill. The carer was here, and asked me if I wanted to go to the toilet. I wasn’t well enough to move, never mind go to the bathroom, so Johan told her on my behalf that I wasn’t well enough. I took meds, and lay in bed for a while with sunglasses and ear defenders on (the karaoke was going on next door and was too noisy). I started feeling better a couple of hours later, had something to eat, and I’m now able to get away with wearing my normal glasses again 🙂
After today I’m not going back to see my GP until I improve. I wouldn’t be surprised if my back was bruised (it certainly feels it) from being dragged up the stairs (and falling down slightly a couple of times). It’s also not fair on Johan to have to try and get someone who weighs more than he does upstairs by himself. This may mean I’m unable to get my tooth removed, which is essential as it’s been causing me a lot of pain for a year now. We’ll see.
I may be feeling okay now, but I’m aware that it’s normal for there to be a delayed effect from this sort of outing, so may be a bit quiet over the next few days. I’m hoping there isn’t though.
I like penguins. Tonight was Frozen Planet on BBC1, so I got to watch lots of penguins, both King and Adelie (there were no Emperor ones tonight, I noticed). Today I also bought some penguin stuff- a book called 365 Penguins, some penguin wall stickers, and some purple penguin pyjamas (in a size 14, since I’m losing weight without trying now).
Tomorrow I have the doctors. I am worried about going out, and having to sit up so long. I should probably be considering home visits but I don’t want to yet as I’m not that ill, surely? I’m going to be asking about ambulance transport to the hospital, as going by taxi didn’t work that well last time.
Had a bath this evening, and lovely Icelandic carer told me my hair now goes down to my bum :p She also had to support me a lot more than I normally need.
I need to sort out the living room, as it’s frustrating me that it’s so close to tidy but not quite there. It would take Johan a few minutes, but he won’t do it (or he would have done by now) so I’m going to have to do it. Tidying the cushions on the sofa and putting some rubbish in a bag caused my legs to jerk uncontrollably this morning, followed by being unable to move them at all. It’s the closest I’ve been to waking Johan up, as the pain in my foot was excrutiating and I couldn’t move it. Luckily it wasn’t too bad when I woke up this afternoon.
First of all, M.E. is not just about being tired. There’s a lot more to it than that, including pain, muscle weakness, over-sensitivity, and lots more. I’m still working (slowly) on a proper blogpost about it. Tiredness is what I’m talking about today, though.
I’m tired. Really tired. All I want to do is sleep, but I did that all day so can’t really now. I woke up when the carer arrived this evening, and was too tired (and in too much pain) to move to even go to the toilet. I was too tired to watch penguins on telly. Too tired to have anything to eat for a couple of hours. This isn’t just normal tiredness, this is complete exhaustion that doesn’t go away no matter how much sleep I get.
On sleep, mine is pretty random now. I sleep for anything from 8-18 hours at a time, then am awake for anything from 8-22 hours. There’s no real rhyme or reason to it. Any attempts to sort it out up to now have failed, mostly because I’m just too ill. When I improve a little bit I’ll be trying to sort it out. Until then I’ll just have to deal with being out of sync with everyone else.