I have posted about this link (Funny, you do not look sick- Spoon Theory) previously.
I hear this quite often, and it is true. I really do not look as bad as this can feel at times. I find I have to keep reminding some people anyway, that just because it appears I am OK does not mean that I am totally fine. On the contrary, I am not fine, and it really appears at this point that any recovery I may have now, or at some future speculative date, will only be a partial recovery at best. And probably will not last very long. I hope I am wrong.
This is a common problem for many with a disease that makes one just feel worse than they may look to the untrained and some trained eyes as well. There is an acquaintance of mine, who has spoken to others about my condition saying to the effect, “I do not get this. He looks OK to me. What is up?” Even my current Physical Therapist who has had a prior patient with PTS/NA and knows at least some of the limitations, had appeared to forget recently that I may not be up for any exercise right now even of a fairly low-key type.
I had to re-explain to him that my muscles do not respond at this point, to any physical “training” that other PT patients may be expected to do at this stage of treatment. I told him that there may have only been one time in my life when my muscles really felt normal, and that at that time it all felt so good to me that I over-exercised and set my recovery back quite a bit. I mentioned that currently my body feels extremely shaky with almost all movements. True, there are some days it is a bit better, but overall it is way out of any normal muscle response to exertion. All my muscles fatigue easily. What I can do is limited by this fatigue. They warned me my muscles may feel stiff after exercise. I said I really doubted that since to be stiff, they would have had to do some work- beyond what the basics of my mobility currently.
I think that maybe now they get it. I hope so anyway. I may be the last PTS patient they see in there practice, but I am there now. There are things I just will never be- and one main thing is, that I will never be muscular to any normal degree. I no longer seem to be wired that way, if I ever was.
