Quote:
Originally Posted by TxSimon
Alice,
Great to have you on this forum and I wanted to welcome you here! I agree that we are all in the same boat and we shall right this ship one day, hopefully soon! I appreciate your input here, but feel free to also express your venting here, as you have those days just like the rest of us and need someone to vent to. We all have our "days" and you are no exception, so express yourself freely and no one will think anything different of you for it! As most of us have found, many of us even have family who do not understand what our life is like, but I have found I can come to this forum and vent and have friends here who understand. Again, welcome and thanks for your inputs.
Hugs,
Simon
|
Thanks simon,
of course I have my bad times, just like any one else,
and this illness is very hard to explain and understand, so obviously there are times when those around you, or even you don't understand what is happening.
and if you have a relatively unusual variant of this illness and/or have less knowledgable/open-minded physicians, or a combination of both, then they don't either.
if someone tells me they never have times of fear, dissapointment, despair etc. then I would think something is really wrong with them. how can you always be stoic about this?
the first time, I collapsed and found myself in a hospital bed, instead of at a hospital bed, and the neurologist that saw me, thought I had a pretty severe illness, pretty much "out of the blue sky" , I was quite overwhelmed and started crying. the nurse that saw me, who has known me very well from years of working toghether, was very surprised to see a physician crying and did not hide that. so I said to her, how could I be able to understand and accept my patient's normal responses to their suffering, if I don't accept my own?
and then when one of the neurologists that took care of me initially, who was also a good friend and colleague, when he saw me very sad, after my illness returned abruptly within a week, after a seeming "remission" , told me that he "can't see me like that" and suggested that I take antidepressants. so I told him that if it is so hard for him to see me like that, maybe he should take them.
it's just that I have been dealing with all this for more then 4 years,
have gradually learned how to live with it.
and am managing to have a pretty good life, despite fairly severe limitations that I have learned to bypass, overcome in various ways.
it was a lot of hard work, trial and error, excellent medical care, and quite the opposite as well, many times by the same physicians. a lot of hopes and shattered hopes, and then new hopes...victories and defeats....
finding those that can help, and avoiding those that mostly do more harm...even if it is out of the best intentions.
and mostly, trusting myself.
alice