I have leant a lot through this 100 days, I have so appreciated my life left to live. I have grown to accept my fate but I have not given up to strive for my independence as long as possible . During these 100 days I have had so much support, love and empathic care which has helped me to have courage to face this cruel illness and become strong and resilient.
I have exposed my feelings to all who are interested in viewing this blog, I do this because it the best why to be communicate in my silent world, i have so many thoughts as my mind is full of energy and I need a channel to communicate these thoughts. I also want to share how life is with MND for those who might be diagnosed now or in the future. It has been comforting to read others experiences who have MND as I don’t feel alone so this blog to a contribution to others diagnosed.
I guess it is also a legacy for the future maybe to Sam and Joe as they get older and maybe the next generation, so they can perhaps know what I was thinking. Everyone who reads this log will face death in the future and you might also be feeling like me one time. I feel my life has been hard as a widow at 40 yrs and facing my death at 52 yrs but I have no regrets in my life , I have been so privileged to have had a life of comfort , experiences and most of surrounded by loving people, life could have been so much harder if I had loved in another era or in a developing country.
I guess my main message on this 100 days it to relish your life , sow seeds for her future but don’t presume you can plan the future live every day as it will be your last . We are on the earth to experience life to not to have a purpose, be kind to yourself and give time to enjoy the world.
My last experience of my 100 days was with my mate Chris she took be to her sport club to experience the spa .. When I slipped into the pool I struggled to swim as I got a sharp pain in my chest … I tried again and it came back ..I thought I would never have the experience swimming again, I wanted to cry as I didn’t relish the last time I swam. Fortunately there was a jacuzzi, the heat i helped to relax my tight muscles and when I tried again I could swim easily. So it was good to retry things that don’t work out the first time. When I swam I relished the experience of stretching my limbs out, I relished the light on the water as the ripples broke up the luminosity. The mist above the water was surreal as I bathed in the warmth of the water while I could breath the crisp fresh air. We then went in the sauna and the deep heat felt it was touching my core muscles and I felt so relaxed . Chris was just beside me and didn’t demand anything of me , the silence was frustrating , it’s hard to share an experience but I couldn’t communicate to her my pleasure .
So that is the end of a 100 days …. But sadly not the end of the MND that will carry on for sure …
Any ideas to carry on would be gratefully received and I hope those of you who are coming tonight will enjoy …..
Living with MND 