I swear one of the most difficult things about this disease is the flux of how you feel. At the beginning the changes we're not noticeable because the disease was progressing. But now that is has remained stagnate for the last number of years I have been able to feel the fluctuations more intensely. At first what I noticed was simply good days and bad days. I was hesitant to make any broad declarations such as I feel all better or I think I'm dying. I just road it out keeping a vague record of it in my mind. As I began to emerge from the overwhelming number of symptoms and began to be able to notice more things around me, I paid more attention to how I was feeling overall.
As I had longer periods of feeling well, I began to plan for the future. Maybe I could go back to school, or take some classes. I would get so excited, feel some of that old motivation. Yet when the next flare came, it came on all the harder because it was like being knocked back into reality. Remember, this is why you are on disability. For some reason when I was feeling better I began to think maybe if I just had the right mind set that I could fight through these flares. I was forgetting that there wasn't anything wrong with me in any other capacity other than physical. If I became miraculously well, I would go right back to who I was before I got sick. I would do and enjoy the things I used to because I had the ability to do them. Not doing those things is because I am sick, not because I either can't motivate myself to do them or because I am lazy or any of those other reasons. So with each new flare there is another coming to grips with having a chronic illness, realizing physically I have no control over it.
The ups and downs of all the emotions were exhausting and frustrating.it was like Chrissy teasing us with her ball. Dangling the toy of feeling better just out of your grasp and just when you almost have it, snatches it away. I seriously wondered if it would be easier to be sick all the time rather than having the ups and downs of feeling good for awhile then back to feeling sick again. The ironic thing is this could happen over an over in the same day. No rhyme or reason.
As frustrating as it is, I will take a moment of feeling better if that is all I am given because in that moment hope is reborn.
