I’m currently experiencing a bit of a relapse, though I am doing a bit better than I was. Last week my sister came around to help out and tidy up a bit, and we had a bit of a chat, which meant I overdid it a bit. I also caught a cold, and my body didn’t react too well. I was completely intolerant to any light or noise, any touch was completely unbearable (it felt like my duvet and pyjamas were trying to murder me), I was in massive amounts of pain that my painkillers were not touching (normally tramadol takes the edge off it) and I didn’t have the energy to move, so I was relying on Johan to roll me over, which also caused more pain. I also had to use a bed pan as I was too ill to manage even the commode- even being propped up in bed made me feel more dizzy, sick and ill.
I am doing a bit better now. I can manage low levels of light while wearing my sunglasses (I tried having the main light on but it was too much). I can roll over in bed by myself, and use the touchscreen on my tablet which is how I’m writing this. I can tolerate some noise. I still can’t cope with being propped up for more than a few seconds so am still using the bed pan. I can’t sleep properly because I keep waking up in massive amounts of pain. I can’t chew so Johan is feeding me soft foods like jelly and yoghurt. I can talk now, though only can whisper. I spend most if my time resting as everything, even tiny things, leaves me completely exhausted.
I am grateful though. I’m grateful that I’ve improved enough to roll over by myself, even if it is painful and exhausting. I’m grateful that I have Johan to look after me. I’m grateful that I have my tablet computer, so I can communicate with the outside world through twitter. I’m grateful to my GP, who asks how I’m doing during Johan’s appointment and is going to phone him tomorrow to talk about me. He also prescribed me calcichew, which I can suck and taste like sweets.
I hope this is just a short relapse. I hope that by Christmas I will be able to sit up in bed, can feed myself solid foods and no longer have to use the horrible bed pan. If I can’t, I’ll ask Johan if I can postpone Christmas dinner until I can eat it.
This is the worst I’ve ever been. It’s scared both me and Johan. I am hopeful though. In good news I’ve been put on urgent priority for an adapted property. The direct payments are being sorted out and Johan is going to get help to manage them. Gateshead Carers Association have been amazing- helping Johan with contacting everyone and being there for him (and me). Things are being sorted. Now I just need my health to improve.
It’s taken me a few days to write this- started it on Monday and it’s now Thursday. Johan is happily playing World of Warcraft and I’m going to get some rest then go on Twitter.