Today I go back to zero days since I had a flare-up this morning. I woke up at my normal time and felt off but many days I feel off and just continue as though everything is fine and it usually is. This morning I went to the gym and I did the elliptical for 60 minutes. As I was climbing off my machine I noticed I was thirstier than normal and my hands were turning blue. I knew the next set of symptoms were not far behind and high tailed it out of the gym. Sure enough I got into my car and the chills, shakes and fever came on fast and furiously. As I approached home and climbed out of my car my legs were so sore, I did make it in the house but my husband took one look at me and said you are in flare-up. Maybe not I tried to reassure him. I thought that if I climbed into a hot shower that the shakes would stop, the cold would subside and I would start to feel better. Many times this ritual works in my favor and off to work I go with no more shakes or pain. When this happens I don’t consider this a flare-up as this is more of being on the verge for me.
This morning it was different, my body was tightening up and became stiff and sore from my feet to jaw as well I have an incredible headache and I need extra medication on days like these. My skin hurts which is hard to describe but it is true. A gentle touch from someone on my arm, leg or back it hurts. My hair feels weird on flare-up days and my neck aches so bad I can barely turn my head. These are true flare-ups for me and although I still try to function normally to other people around they can instantly tell I’m not feeling well and I will only stay in bed if I’m really sore and really sick. If I stayed in bed every time I felt like this I would start to lose part of my life. I need to still see people, work, take care of myself and be a good a spouse to my husband. I don’t want to live my life on the couch or in bed wondering when it will end. This is my life, I need to embrace all that it is and although I get frustrated when I flare-up I also realize that I do what I need to do to stay healthy but this disease tends to have a mind of its own and it just starts attacking for no apparent reason.
I often talk to my doctor and just say tell me what to do to not have another flare-up and I’ll do it, but no one knows. There is so much research out and yet this is still considered a disease with more questions than answers. I will take it easy today and go to P.T and try to make this flare-up quick so that I am back to base line tomorrow. I am leery about the word normal so I use base line a lot. This afternoon I will cry a couple of times and it is ok. I’m not crying necessarily because of the pain but more the frustration I feel and loss of control over when I get these flare-ups. After my good cry, I pick myself up and dust myself off and remember that tomorrow is a new day and if I feel ok when I wake up I’m at 1. One day without a flare-up and I’ll start the count all over again in my journal.