Tuesday, February 3, 2009
I haven't posted for a while and I've missed it. I've started out to write many times and either been too foggy to make a start or gotten half-way through a post and been too exhausted to finish. This is a very difficult post for me to write and share.
I have Chronic Fatigue Syndrome (CFS) and I am going through a difficult time with it right now. For about the last year, my CFS has been worsening again making it harder and harder to do everyday things. It's hard for me to talk about this. I'm a very private person, I try to look at things from a positive perspective, and I don't like talk about sad/depressing subjects a lot, especially being ill.
In the past, I have preferred people to 'see' me instead of the CFS. Unless there was a pressing need for them to know, I didn't tell them about it until I got to know them better or I felt they needed to know. I didn't hide it, I just didn't make a big deal of it. People close to me knew, of course. The worsening of my CFS has made me take another look at how I handle telling or not telling people. It's much more obvious now that I'm not functioning the way I was and I look sicker.
To keep quiet about it now would result in lots of misunderstandings. I would wind up seeming unfriendly and aloof by not taking calls and by frequently turning down invitations. Not to mention downright rude when forced to cancel at the last minute because I'm too ill to go. I would wind up being even more isolated than the illness itself makes me and that is isolated enough.
Frankly, I just don't have the energy to be subtle either, lol. I don't know if is the just the fatigue but I've been having doubts about keeping silent about the CFS for a while now. It's such a big part of who I am that to keep it hidden is like denying who I am, as well as being tiring in itself. I'm having to rethink things.
On top of the symptoms that go along with CFS and rethinking how I am going to 'present' myself, I'm feeling frustrated and sad, and, yes, a bit afraid. I'm not just having to decide how to present myself...I'm having to 'redefine' who I am...again. How do I present myself (and by extension, the illness) when I don't know who I am anymore? Facing getting worse again is very hard and I'm going through something of an identity crisis right now.
Who am I? What am I able to do? What do I have to offer? Where is my life going? I’m working my way through it but I am experiencing a great sense of loss and frustration. I’m really surprised by the extent of it...I thought I had gotten past this stage and accepted, but here it is again 5 years later. Of course, I had also improved and hoped not to get worse again. Here I am worse again...desperately hoping it's a short-term thing and I will get better again.
Note: the collage and found poem above was created by me for my illustrated journal. Clicking on the picture enlarges it.