Month: December 2011

Danni

Improvement

Danni, M.E., Physical Disability, Real Life

I’m still nocturnal, so when I say day I mean the period of time I was awake (starting around 7pm last night).

I have just had the best day physically for about 3 months. My pain was well managed with painkillers. I managed to eat with a spoon, only dropping it occasionally and the hand spasms being short lived. I sat in my computer chair for two periods, both of several hours. This I was able to do as I didn’t feel worse for being in it- normally within a few minutes of sitting up I start getting very dizzy, more nauseous and generally feel more ill, but today it just didn’t happen. I probably spent far too long sitting up because of this, but I still feel okay now. I even forgot temporarily that I couldn’t walk, so fell over in the attempt 😛

I’m not sure why I’ve had such a good day, but I suspect that it may just be that I’ve been listening closely to my body the last few weeks. I’ve had no external commitments, so I’ve been sleeping when I want, eating pretty much when I want and not pushed myself to do anything that may make things worse. I’ve also let Johan do more for me, and have tried hard not to feel too guilty about it.

This may be a one off. I may have really overdone it today and end up relapsing again. I hope not. M.E is often an unpredictable illness, and since we don’t know the cause we can’t be entirely certain what makes it worse or better (though over-exertion will normally make things worse). Up until now, my general trend has been downwards, gradually getting worse with occasional relapses that are much worse, but which I normally recover from (though not always back to where I was before). That has been the case since I first got M.E over 2 years ago. Some of that has been caused by me being too stubborn and overdoing it, especially with college. Since I quit college in October, it was hospital and medical appointments (including ones to see the CFS clinic and my specialist) that made me overdo it. The only period of relative stability was during the summer holidays this year when I didn’t have college and didn’t leave the flat (and I was doing much better then than I am now). As soon as I started going to appointments and then went back to college, I declined rapidly and ended up nearly completely bedbound (only able to get out of bed for very short periods of time-no more than 10 minutes without getting payback).

I am hoping that today’s improvement is a sign of things starting to get better. I still have a long way to go, as even today I’ve had to have Johan do a lot for me. Cognitively I’m still not even back to where I was pre-relapse, and I feel stupid and very confused most of the time. I will take anything I can get though.

Danni

Brain Fail

Computers, Danni, Gaming, M.E., Physical Disability, Real Life

I want to blog. I have lots of subjects I want to blog about, and even a couple of drafts. My brain its not cooperating with me though so it’s hard for me to write.

I enjoyed Christmas. I’m mostly over the relapse that made me very ill, and back to my “normal” level of functioning. I’m completely nocturnal at the moment, but that’s okay as I have no real need to be awake during the day. I’m sleeping when I’m sleepy, eating when I’m hungry (including lots of chocolate, but it is Christmas), sitting at my computer when I feel up to it and generally listening to my body. I’m also happy.

Facebook is feeling too much for me at the moment. I’m playing a bit of The Sims Social, but trying to keep up with my friend’s statuses is just confusing me. I’m managing Twitter better though, so if you like you can follow me on there @Dannilion.

I know I’ve said this lots recently, but thank you to my friends for being there for me. I really do appreciate it. Thank you also to Johan, who has been doing a remarkable job of looking after me, both during and after this relapse.

Danni

Happiness Is…

Danni, Important Stuff, M.E., Mental Health, Penguins!, Physical Disability, Real Life

Happiness is having a brilliant Christmas.

Happiness is being able to sit up, both in bed and in a chair for a little bit.

Happiness is being able to eat proper food (without choking!).

Happiness is being surrounded by penguins.

Happiness is spending time with a loved one, with no distractons.

Happiness is knowing you have friends who like and love you for who you are.

Happiness is talking to your daughter on her birthday, and hearing the excitement in her voice about Christmas and birthday celebrations.

Happiness is getting all your Christmas wishes coming true.

Happiness is hearing your friends are happy.

Happiness is knowing that your safe and secure.

Happiness is getting lots of lovely, well thought out cards and presents :p

Happiness is being grateful that M.E. didn’t ruin everything.

Thank you.

Danni

Relapse

Computers, Danni, M.E., Physical Disability, Real Life

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.