The Bad Stuff:
I am so sick of the rubbish parts of my life. Of not being able. Full stop.
Sick of feeling crappy. Sick of feeling exhausted. Sick of every day looking the same. Sick of not knowing why. Sick of how a little virus can knock me down so hard. Sick of these four walls. Sick of not having physical ability to fulfill my needs let alone my wants. Sick of having to plan but not being able to plan fully.
I don’t think I’ve washed for 5 days … but I can’t really remember. I’ve spent 2 of those 5 days in bed all day – morning, noon and night. Prior to that I’d only spent 2 or 3 days in bed all day in the last year.
I lost most of summer 2007 to a virus which turned into a chest infection and took me 3 months to recover from. I lost all of January 2008 to another virus affecting my sinuses and throat. I was better for all of 5 days (and by better I mean back to dealing with “just” crappy CFS/ME) before I got hit by another virus, or a flare up of the same.
I miss the outdoors. I miss the world. I miss my friends. I miss being able to be a proper daughter, a proper partner. I miss being spontaneous. I miss being able to work out this kind of frustration by engaging in physical activity.
The Bright Side:
Being frustrated, angry, upset about something isn’t going to stop it from happening. It isn’t going to bring a solution. It doesn’t change that I am ill.
It’s important for me to remember that I am ill and it’s CFS/ME that brings the limitations. It’s not lack of wanting, motivation or being weak. If anything I am strong not weak.
Anyone who is used to leading an active life and who has to be housebound for everything except doctors appointment (and being ferried to respite gofers) is going to feel a bit whacky and out of sorts.
It’s not like I have this terrible life and I am in fact pretty content in my life such as it has to be. I have seen family and friends these past 4 months and enjoyed their company. Indeed in autumn/winter 2007 I was starting to do a bit more and get out and about. Many of my symptoms are fairly stable when there isn’t a virus aorund to cock things up – so it’s much easier to navigate life and avoid very nasty episodes. December was an exercise in pacing and restraint for enjoying Christmas festivities – which I did very much. There were small improvements.
It’s just hard sometimes to keep the good stuff and let go of the bad stuff.
I know I can do it. I know I am very fortunate in so many ways.
I give thanks for the life I have.
But it would be good to have a great life where I also get to be more able please …