I think I’m over the worst of the relapse. It never got as bad as in December, in that for some of the day at least I could tolerate small amounts of sound and some light with sunglasses on, and never stopped drinking, but I still was very ill and my arch nemesis the bed pan was brought back into action when trying to use the commode made me much worse.
There are some residual effects. Because I was moving much less than is normal for me (not that I move much anyway, but during the relapse I was only moving every 3-4 hours to adjust position as that was all I could manage) I got severe constipation. When I started moving again, so did my digestive system and the pain involved was immense, as it aggravated my hemorrhoids and I think I may have torn the skin as well. Luckily we had some Orajel in and that helped (I checked online that it was okay to be used that way). I think for next time I’m going to ask the doctor for some laxatives to be taken during a relapse so it never gets to that point (it was the same after the December relapse). Johan went to my doctors appointment on Friday and the doctor is going to ask the CFS Clinic about stronger painkillers for relapses, as I can’t have oramorph and tramadol just isn’t strong enough (for my normal levels of pain tramadol is my wonder drug- takes the edge off it so I’m able to do stuff and concentrate on things other than pain).
I’m still not great. On Friday evening I was able to go on my computer for a bit so played World of Warcraft, which made me very happy Unfortunately since then I’ve been stuck in bed again, as just been really weak and bleh. Luckily double tramadol is enough for my pain now so that is good. My sleep is also all over the place so that’s making things awkward for Johan.
The biggest thing I want now is a bath. Of course, at this new flat we don’t have one, and there’s still another 5 weeks to go until the shower is usable. I haven’t had a proper wash for nearly 3 weeks now, and my hair is also very greasy. I’ve been meaning to have one since Friday (which was the first day I was well enough to be able to tolerate one) but with me sleeping all day and Johan having brain explosions we’ve not got around to it yet.
Having a wash for most people isn’t a big task, but for me it’s one of the harder things to do. It’s one of the areas that autism and dyspraxia makes things harder than it would be if I only had M.E. Because I’m touch sensitive, being washed is very overwhelming, so I can only do it lying down (that’s been the case for about a year now, even when I was able to go out and about). Luckily my smell sensitivity isn’t as bad as it can be, so I when I am washed I use some things with nice smells, such as my cherry almond shampoo (reminds me of bakewell tart) and coconut body wash. When we had a bath I used to lie down in it using the reclining bath seat, have my hair washed (either by a carer before we sacked them or by Johan) then I’d soak in the water to clean most of me, using body wash on my face and selected other areas. As I wasn’t trying to wash everywhere directly, I was able to do the washing my body bit myself most of the time which gave me some independence.
Now we don’t have a bath, I have to wash in bed (there’s nowhere in the bathroom for me to lie down yet). We have a bed shampoo thing, so Johan washes my hair in that and tries not to knock the bucket over and soak everything on my floor After he’s washed my hair (I’m currently using a 2 in 1 shampoo and conditioner to make things easier) he washes my body. I normally do my face but the effort of that is normally me completely exhausted, so Johan washes the rest of my body. Some days I’m not well enough for all of it to be done, so he concentrates on the smelliest areas. Then I rest. Of course I’ve missed out the bit where Johan has to fetch everything and bring it into my bedroom, which sometimes makes his head explode. It’s a massive task and I try and have my hair washed every week or so (with a full body wash) but sometimes my illness gets in the way.
Because of the problems Johan is having, we’re getting carers in again. We’re giving up on direct payments for now as neither of us are able to manage the paperwork yet, so we’re going back to commissioned care. As we’ve moved to a more central area, there are more agencies covering where we live so it will be easier to change if things don’t go well, but the old care company don’t operate in this area so we’re hopeful. This time we’ll be able to tell them what doesn’t work for us and how they can help us from the beginning, so that should make things easier as well.
We’re also going to be having council cleaners to come in and help, which we’ll pay for ourselves. This will be a massive help for Johan as he’s just overwhelmed with everything at the moment. Our social worker had forgotten that we’d asked for this already but we’ve told him again so hopefully that will happen soon. I think if Johan knows that we’ll be having someone come in every week to do the bulk of the cleaning it will take the pressure off and he’ll be able to do some of the easier things himself.
Things aren’t brilliant but they could be worse. Of course I’m aware that just being eligible for carers makes me very lucky, though it’s because I’m severely disabled and if Johan breaks down again I’ll have to go into a care home, which is more expensive for social services and which we don’t want (my current care needs are classed as substantial).
Now I just need to improve. First step, having that wash (hopefully today), then maybe soon I’ll be able to go into the living room again. I have some orphans to take around Azeroth