lostin
Active member
- Joined
- Jun 21, 2011
- Messages
- 63
- Reason
- PALS
- Diagnosis
- 09/2010
- Country
- th
- State
- phuket
- City
- patong
29Sep2011...NOT an ANNIVERSARY to celebrate!
1 year ago today i was diagnosed with this horrible disease which means i have probably had it 2 years or more.
30Sep...I know what people mean about not knowing what to say...I have the same problem writing to one of my brothers who is not ill but much of his daily life is similar to mine...lack of freedom; boredom and frustration and depression. ..on top of that I am now totally reliant on other people to get me through each day.
I can see from the number of views that many people read this. ..what I'm going through everyone will have to face at some point...we are all on a one way trip but we all make the journey in different ways. I've been dealt a bad hand because I've managed to get this disease for which there is no cure or treatment...just painkillers and antidepressants. I have also had a fast progression in comparison to many others with this. The one good thing about losing almost all the muscles in my legs is that I don't get the very painful cramps I used to get in my calves and thighs anymore but they've been replaced by spasms when I lay on my back in a certain position pressing some nerves that make my legs twist uncontrollably. ..at least it doesn't hurt.
I have had many people say that I am brave to carry on and they would have given up by now. I feel the complete opposite. I think the ones who go early are the brave ones as it is well documented what happens in the final stages. I passed up the chance to go to Dignitas in Switzerland last year because I didn't have the courage to go while I could still walk and talk...to be accepted you have to go way too early. I reckon I passed the point they would have accepted me around February. If you watch the BBC documentary made by Terry Pratchett featuring Peter Smedley from my birthplace going to Dignitas he made it look so easy...he was very brave. He was a multimillionaire so could have had the best of health care yet chose to terminate his life early. I suppose the fact he was 72? and had had a full life made the decision easier for him and his wife. The documentary is easily found on Youtube.
I'm in no hurry to go and actually fear dying even though it's a natural act and I worked with dead people for a while before so should be prepared. I don't believe in an afterlife so we need to make the most of this one...anything after this will be a bonus.
MY life This_is_MY_life • View topic - This is MY life
1 year ago today i was diagnosed with this horrible disease which means i have probably had it 2 years or more.
30Sep...I know what people mean about not knowing what to say...I have the same problem writing to one of my brothers who is not ill but much of his daily life is similar to mine...lack of freedom; boredom and frustration and depression. ..on top of that I am now totally reliant on other people to get me through each day.
I can see from the number of views that many people read this. ..what I'm going through everyone will have to face at some point...we are all on a one way trip but we all make the journey in different ways. I've been dealt a bad hand because I've managed to get this disease for which there is no cure or treatment...just painkillers and antidepressants. I have also had a fast progression in comparison to many others with this. The one good thing about losing almost all the muscles in my legs is that I don't get the very painful cramps I used to get in my calves and thighs anymore but they've been replaced by spasms when I lay on my back in a certain position pressing some nerves that make my legs twist uncontrollably. ..at least it doesn't hurt.
I have had many people say that I am brave to carry on and they would have given up by now. I feel the complete opposite. I think the ones who go early are the brave ones as it is well documented what happens in the final stages. I passed up the chance to go to Dignitas in Switzerland last year because I didn't have the courage to go while I could still walk and talk...to be accepted you have to go way too early. I reckon I passed the point they would have accepted me around February. If you watch the BBC documentary made by Terry Pratchett featuring Peter Smedley from my birthplace going to Dignitas he made it look so easy...he was very brave. He was a multimillionaire so could have had the best of health care yet chose to terminate his life early. I suppose the fact he was 72? and had had a full life made the decision easier for him and his wife. The documentary is easily found on Youtube.
I'm in no hurry to go and actually fear dying even though it's a natural act and I worked with dead people for a while before so should be prepared. I don't believe in an afterlife so we need to make the most of this one...anything after this will be a bonus.
MY life This_is_MY_life • View topic - This is MY life
