In my last update I was fairly up beat, my pain had declined a lot and I was feeling pretty positive in myself. I was getting lots of exercise, sleeping ok, and coping well with the fatigue. However just after that update I got a chest infection, this is what happened:
- Very quickly, as soon as I noticed that I was starting with a cold, I felt an increase in muscle and joint pain
- I went to the doctors 2 days after the cold started and he said I had a chest infection, probably as a result of my steroid suppressed immune system. I started on Antibiotics that day
- The antibiotics got to work quickly and my muscle and joint pain subsided in perfect step with my chest infection
- However my fatigue levels did not subside, in fact they increased
- After a week the chest infection was gone, but the muscle and joint pain started to come back
- After two weeks all of the chest/cold symptoms have gone but the fatigue is very bad and the joint and muscle pain still comes and goes through the day. My concentration is appalling.
- I went back to the Doctor and he suggested going back to 20mg of Steroids rather than 10mg.
- The increased steroid dose has not helped, if anything my fatigue is even worse. Whereas previously on 20mg of steroids I could not get to sleep before 2:00AM and was awake by 7:00AM. I am not easily falling to sleep by 11:00PM and struggling to get up by 8:00AM.
The following chart gives you an idea of my ups and downs:
However the good news is that I have continued to work 4 hours a day through this latest episode with the following challenges:
- I can only concentrate for about 30 minutes at a time
- I have to take a break every 30 minutes, or do something different
- I make many mistakes, and have to do a lot of rework
- To get 4 hours done I am finding extended day best, starting at about 8:00AM and finishing at about 8:00PM with lots of breaks in between and gentle exercise. However fatigue and pain mean I have had to reduce walking to 15 minutes a time rather than 60 minutes, and 10 lengths of the pool rather than 40.