I am staying in Gloucestershire for a few days with my sister so i have had time to think.Thanks to everyone who gave me some encuragement when I really needed it .You all helped in your special ways.
Sometimes there is a gap between yur reaction and accepting an idea.That is when you feel alone even when you are not,
I think the worst experience of this disease for me is not the physical deterioration because we can adapt.It is the mental torture, the sense of loss.You once could do things and because this disease has not affected me cognitively you feel emotional pain.You feel sad, and for me even the smallest thing makes us cry.So mental health is very important and we have to remember we are not just substance but unique.
For those who have a spiritual belief we go through wilderness experiences and sometimes we may doubt where we are going.There maybe a gap where you feel abandoned but from my experience God or a Higher Power sends along someone at the right moment the right support for us at the time and gives us what we need whether it is emotional or physical or both.
What I have learntsince being away is that there are different ways of suffering whether it be bereavement,a child on drugs or drink,loss , divorce etc.They all cause emotional pain and I think what i was afraid of last week is emotinal pain and turning out like my father who had a long drawn out battle with lot of pain with Parkinson's Disease.There is so much more they can do now but back in the 70s I think it tramatised me and my sister.
I watched a video of a young girl with cystic fibrosis.She was so upbeatt and happy she put me to shame.My husband said what is different between the two Fridays..I allowed one man to destroy my happiness. That was the Neurologist and that was my fault not his.
I can count my blessings again aand go back to doing all the things that made me happy like going out explorikng on my mobility scooter,exploring Nature which I fiind therapeeutic,reading and mooching about in the garden.Instead of getting upset about theskills we have lost look at all we have gained.Its up to us how to choose how we react.
It is about the quality of our life not the quantity.You could live a long life and be miserable or a shorter life filled with happiness.There are lots of mysteries we cannot solve by our own thinking.
For those feeling useless physically my sister says she needs me for moral support.That makes me feel needed.Sometimes we feel a burden but we are not .We are often valued in different ways.
Just some of my philosphies that might help someone else going through a wilderness experience.Thanks once again to all of you who carried throgh a difficult time.