Is what you are experiencing normal? Yes it very well may be; but what is normal for you may not be normal for someone else who has TM/MS/NMO. We all experience symptoms differently in ways that are unique to us, and these manifest according to the locations of demyelination, the type and the severity. TM seems to vary in severity and length of time that one has the effects.
For example, my experience is similar to what you are describing and it is hard to discriminate between what is an acute episode of TM, what is a flare of residual demyelination/neurological damage or both.
I've had a quite a few go rounds with MS/TM/ON and have been dealing with another ongoing relapse of TM/MS, possibly NMO symptoms since 2010. For me, the symptoms of TM are milder than for some, and they last for a year or longer instead of for a few months. Apparently that is my 'normal'.
To outside appearances, we may appear to be quite healthy most of the time. What aren't revealed or so obvious are the accommodations that are, and have been made to create that appearance.
Here are a few things to consider:
- Unless someone lives with us and even then sometimes, it goes unnoticed that there may be sleepless nights curled up in a ball with the pain and spasm of the 'hug' and/or legs doing their own thing.
- Others don't see that it may take us longer to accomplish what they take for granted, if in fact they can be done at all.
- Others don't know that it may take us hours instead of minutes to go from bed in the morning, to breakfast, to the shower and to the door so we can be 'out in the world'.
- It isn't apparent or known that throughout the day we might be dealing with the side effects of fatigue, medication, or the disease manifestations itself.
- Others can't 'see' that maybe we simply can't at times.
- Others can't know what it means to have a body fail or go into a sudden circus of pain and disability unless they have experienced that for themselves.
- Moreover, few can appreciate what it takes to work through these things when what they perceive is an apparently healthy person before them.
- Even if/when there are outward symptoms of gait disturbance or obvious paralysis, often others ascribe these to a past traumatic injury or stroke and not to a progressive, ever changing disease.
- It is all very frustrating and that too is normal.
Considering only these few points, it might be easier to accept that what may be perceived by others is only their perception. As such, it has little bearing on your reality.
Hang in there, look after yourself and do whatever you feel is best to adapt and control symptoms.
With love, Erika