Where do I start ……..
Well there is the guilt associated with asking endlessly:
If I had pressed harder for an earlier diagnoses
If I had asked more questions,
If I had demanded more answers,
If I had exercised more.
The endless lists of things I maybe could have done better so I didn’t end up so disabled. I know there is no point, because no one can ever know, from all the research which is possible these days I know we are all different and it is impossible to know how the disease will progress in any one based on how it all started.
There is the guilt because you feel you have held everyone around you back, due to your limitations. In terms of outings, holidays, the fact that you had to struggle so much to work you had no energy left to enjoy yourself, then the fact that you had to give up work early so imposing a financial pressure on top of everything else.
Then there is the guilt when you find yourself wandering how you are going to cope when your elderly mother becomes more frail as you are an only child and no other relatives around to help you, and the guilt because she is worrying about how you will cope too.
There is so much guilt, perhaps that is why the dark cloud of despair and depression visits many of us. We have the good days and we try to use them to the best of our ability so at least when the bad days come you don’t feel guilty for wasting a good day.
However, every now and then I remember, that by doing that, I end up doing too much on good days, and unable to do anything on bad days, what happened to pleasure, enjoyment, too guilty thinking about the ironing needing to be done, the dirty kitchen floor……….
Guilty for doing too much, guilty for doing too little, guilt guilt guilt…….