In terms of my symptoms, there are three ways these generally show themselves:
1) straight away - I can be doing something and all of a sudden my legs turn to lead and I'm instantly hit with overwhelming fatigue
2) A night time attack - if I have done something in the day that has upset my system then I can be woken in the night with night time shaking followed the next day with fatigue
3) delayed fatigue response - 2 or 3 days after my body has exerted itself in someway I will get the delayed fatigue commonly associated with ME / CFS.
Yesterday I trooped around Paris in 25 degree heat - something unimaginable for me 6 months ago. Don't get me wrong, my walking is laboured and my pace very slow, but I kept going. By early afternoon I was feeling a little hysterical. I had a manic smile on my face knowing that if I let it drop I would burst into tears. My legs were soooooo tired. As we approached our destination, I welled up a few times as I thought about the fact we still had the return journey to do to get us home, it seemed overwhelming. I kept smiling and putting one exhausted leg in front of the other.
Something was different about this experience. From the hips down my body felt completely exhausted, but from the hips up my body felt fine. Normally my whole body would be effected. My legs were heavy, but they were also aching with the effort of exercise and this is something I was very happy to experience in some sort of masochistic way.
I obviously didn't attempt to climb the tower, but the 45 minute wait that I had whilst the others did climb the tower gave me some recuperation time. I made it back to the train and home to the apartment. We were late back and then there was dinner and recounting our day to those who didn't come. By 10.30pm I started to feel I had overdone it and said my goodnights. I laid in bed and could feel my heart pounding in the way it does when i am fatigued and it is too much effort just to lie there.
The point is, I did make it through the day without my legs turning so much to lead i couldn't put another step forward, I didn't have a night time attack either, so now I must wait and see whether number 3, the delayed fatigue will get me. Or maybe my leg muscles will just recover over the next few days and be stronger as a result of all the exercise they have had.
I can't help but feel a little nervously optimistic.
1) straight away - I can be doing something and all of a sudden my legs turn to lead and I'm instantly hit with overwhelming fatigue
2) A night time attack - if I have done something in the day that has upset my system then I can be woken in the night with night time shaking followed the next day with fatigue
3) delayed fatigue response - 2 or 3 days after my body has exerted itself in someway I will get the delayed fatigue commonly associated with ME / CFS.
The reason I am listing these is because I am getting the first two less and less. This wek whilst on holiday I have walked so much more than I have in recent weeks.
Yesterday I trooped around Paris in 25 degree heat - something unimaginable for me 6 months ago. Don't get me wrong, my walking is laboured and my pace very slow, but I kept going. By early afternoon I was feeling a little hysterical. I had a manic smile on my face knowing that if I let it drop I would burst into tears. My legs were soooooo tired. As we approached our destination, I welled up a few times as I thought about the fact we still had the return journey to do to get us home, it seemed overwhelming. I kept smiling and putting one exhausted leg in front of the other.
Something was different about this experience. From the hips down my body felt completely exhausted, but from the hips up my body felt fine. Normally my whole body would be effected. My legs were heavy, but they were also aching with the effort of exercise and this is something I was very happy to experience in some sort of masochistic way.
I obviously didn't attempt to climb the tower, but the 45 minute wait that I had whilst the others did climb the tower gave me some recuperation time. I made it back to the train and home to the apartment. We were late back and then there was dinner and recounting our day to those who didn't come. By 10.30pm I started to feel I had overdone it and said my goodnights. I laid in bed and could feel my heart pounding in the way it does when i am fatigued and it is too much effort just to lie there.
The point is, I did make it through the day without my legs turning so much to lead i couldn't put another step forward, I didn't have a night time attack either, so now I must wait and see whether number 3, the delayed fatigue will get me. Or maybe my leg muscles will just recover over the next few days and be stronger as a result of all the exercise they have had.
I can't help but feel a little nervously optimistic.
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