We have had our Grandson all week which is fun, but since my wife has to take care of him most of the time she gets worn out on the weeks that we have him. He will start school soon so we will not see him much. She plays with him as much as she can even with her Spondylitis she keeps going.I have noticed the past few times we have had him after he is gone,and she gets a chance to relax she ends up with a migraine headache, and for those of you who have had them nothing can be done, and you can do nothing until it is gone.
I was not able to get out of bed, or move for that matter until almost noon today so that is half the day! These are some of the days in which a Dystonia patient feels worthless, because there is not much I can do to help her. I over heat very quickly. So I try to do what i can, but it is not much.
She carries most of the load on her shoulders. This is where the caretaker does get enough credit., because when the headache goes away she has everything still there waiting for her, as for me this is a more mentally taxing day than anything because if I try and help I will have a Dystonic storm, but if I do nothing I feel like a bad husband. It is a terrible conundrum in which I find myself. What would you do? feel free to comment on the blog I am curious as to what your answers would be. Just put yourself in my situation and tell me what you would do. Would you risk having a Storm why she takes care of with a headache, or knowing my wife, watch her do most all of it knowing you cannot help.
This is just one example of the struggles that face a dystonic patient. How much is to much, when will the storm start, how long will the storm last, how badly is this going to affect my family? These are all things I have to think about before I start anything, and believe me it is mentally taxing, because she will get frustrated that I cannot do more. Do not get confused she is not angry at me she is frustrated at the disease because she knows that if I could help her I would.
Some of the best memories we have together are working on the house to improve it. I would usually dry the dishes and that was dun because it was after work and we could talk about how each others day went, but those days are gone and I miss them. Be grateful for what you have because it can be taken away in an instant. Do not take your health for granted, for in a moment it could be gone. and all the plans you have made will have to change with it. Stop Every once in awhile in this fast paced world and smell the roses! enjoy the moment because it is fading and you do not know what the next one holds! When I am having good days I must remember to enjoy these moments they are few and far between, but I thank the Lord that he gives them.
I woke up with my body twisting on the inside and it is very painful, it has not stopped, usually on days like today it will not stop. Mostly it is a question of how much I do before the Storm hits.
Just remember to say a prayer for us, because sometimes there is no correct answer, or I have not found it yet!
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