No fun

Till now I always tried to ignore the fact that I have a disease. You may think that's impossible but no. I don't know how it is with you, reader of this blog: When I sit in front of TV, read a book, talk to friends, make music, I forget the world around me and I forget my disease. No problem. Moments like that are very often every day.

But yesterday I just coud not use my legs. Getting from one chair into an other: O help I was afraid to fall on the floor. Going to the bahtroom: first I am afraid to fall on the floor. Then I have to stand up again to pull my pants up, again I almost fall. I have to balance on my right foot. My left leg just does nog want to support me. I can't pull up my pant. Husband has to come and help me. But he is not quick enough: help! I almost fall. O.k. I did not fall. Now I must step from toilet into wheelchair. Difficult. Be careful not to fall. I am afraid again.

After a few of those moments it just hits me: I want to stop with this disease, it's no fun anymore. And than all of a sudden I realise: there is no exit in this disease except the one exit I don't want to take. There is no escape. So now you all know, why I had a difficult day yesterday.

But then: one HAS to go one whith life. So just like someone running the marathon: if you're in pain and think you can't go on running, just clench your teeth, ignore the pain and keep on running. You have to if you want to be in the game. So today I just took myself up. I went to my work, I went shopping and to physical therapy. I am in the race again. Please run a bit together with me.

If you want to help find a cure for ALS please look on this link: http://www.alsvrienden.nl/acties/LianneGoes/Mijn-25-jarig-ambtsjubileum/donaties.aspx

ALS is not all there is

Yes I have ALS, and I find that the disease is affecting my body and mobility. But ... I want to have a life besides being ALS patient. So my goal is to have a highlight every day of my life.



Last few weeks were good weeks. Today: I went to the swimming pool with my husband. I had not been swimming for almost 8 weeks, because I was afraid that I could not climb out of the pool. But today I was there again. I could walk and swim in the water. I could stretch the limbs of my feet and relax in the water. It was great.



Last weekend: we went to the river Schelde near where we live. In the water we saw a porpoise (bruinvis) jumping out of the water. Also we saw a buzzard, being was attacked by smaller birds protecting their nests. It is very beautiful outside in Zeeland (Holland) The weather was nice, Frans was playing his bagpipes and people came to listen to him.



Last weeks we invited several guests for lunch or dinner at a nice restaurant, just to celebrate friendship. It were lovely days and evenings, with much friendship.



Also I went to band practice with the wood wind band. I love playing the clarinet and it gives me lots of pleasure. I bought a new book for playing piano, it came the next day and I have now a lot of new tunes that I can play on the piano.



Last week we booked our holiday for this summer. We will be going to Scotland for two weeks in August. One week in the countryside and one week in Glasgow, the most vibrating and interesting city of Scotland. We will be there for the pipe festival. I keep my fingers crossed that I will be able to go on that trip. But I am confident.



So you see: ALS is not all there is.