If anyone had told me back in September that by December I would be wheelchair bound, unable to do many things for myself and at the beginning of a long stay in hospital, I would not have believed them. However, that is exactly what has happened to me. I have gone from running the house, supporting my husband and children and running my own business, to being totally dependent on my husband, unable to move around the house because the wheelchair won’t fit, and unable to go out without assistance because of wheelchair unfriendly pavements, hills and my lack of strength.
Such an experience has been totally life changing, unexpected, and devastating on all family members concerned. There was a period of grief that had to be endured. Grief for the way life was. Grief for all the activities that occurred and which now cannot be. Then followed the honeymoon period when the family was reunited followed by the realisation that, at least for the moment, this is how life is. The settling into a new routine which includes hitherto unknown appointments, challenges, and battles with bureaucracy.
It is a good thing that we can’t see into the future, as it would be hard to carry on. However, our experience has been extremely life affirming. During this difficult period of our lives we have discovered what amazing friends we have, how valuable our community is, and what relationships mean at their best. It has become a time for me to see not what I can’t do, but what I can. How I can make a difference to the family. How I can help other people. How I can do things differently to benefit not only myself, but also others around me. One thing I have learnt is to consider hobbies and activities in a different way. Socialising with friends can be a hobby, as can becoming better informed about my diagnosis and how to live with it. I may not be able to cook dinner, but I can spend special time talking with my children. There are parts of the bedtime routine that I cannot do, but I am able to read stories. My situation may change, but I hope to use my experiences to contact others. By creating an FND community within Bristol which will in turn help itself. I also hope to be able to promote awareness of the FND diagnosis.