Yes Nicky you are so right. I need to stop myself and slow down, cos that way I will get there sooner than if I just rush on ahead!!!!
Am spending the day with my niece cooking and generally having fun, which is always good for my well being.
Kate

Hi Nicky,

I have been researching this question of MG and excercise ever since I became ill. I have read ( I believe) everything that has been written about it (very little really), I have consulted sports physicians, I have used various techniques ( such as movement notations) to try and find the optimal excercise plan for me. I have tried inferring from marathon runners, and consulted a marathon trainer. (as the issues are similar in many ways, only for them it is 40+ km and for us possibly 400 meters). I even had a formal excercise test done to marathon runners to assess my VO2 max. (he did it twice within a month, because he couldn't believe the results), and almost forced him to give me a training plan, based on my abilities. ( I have to admit that he was reluctant to do it, seeing the results of my excercise test, and the way I collapsed after 5 mintues or so of doing it, and warned me to rest the moment I feel even the slightest shortness of breath).

I realized with all my experiements that excercise (like many other things in MG) is a two sided sword. it can make you feel much better (just like you describe) but can also rapidly and almost unexpectedly make your condition much worse.

I think that the best advice I got on that matter, was from my neuromuscular pulmonologist. she said to me that any activity that requires more then an hour to recover from is too much for me at that given moment. and this level of activity can change significantly from one day to the other, or even on the same day. this rule of thumb really helped me pace myself.

of course its not scientific, and there are times, when I could probably do more and end up doing less, and vice versa. but, overall it gives you some sense of what you can and can't do, and how to maintain your activity level without crashing.

of course this is totally different if someone is in remission, or has a very good control of his/her illness, which is not the case for me, and has never been for more then a few brief days every now and then. but, I belive that even a healthy person should not exauhst him/herself beyond a certain point. and probably recovering within an hour is a reasonable rule of thumb for everyone.

alice

Hi Nicky
we all have a different story and our MG effects us in different ways .
but to feel good mentally and the other things has to be great and as a ex marrathon runner its about finishing no matter how differcult it gets its not just the excercise that makes us feel better but even when something special hapens to us like good news that to can have a positive reaction on our syptoms i see your still on predisone that must help as well
when i have a bad day not able to do anything i just know its going to be for a little while and will past the key is knowing your limits but anything that makes you feel good is as good as a drug and i to think it would be great if bill gates could help us to all meet lol
don't give up when you have a bad day as the next can be good
alan

this is something I wrote a few years ago, when I was still able to walk on my own...
and I think it is still true...

The marathon run

I joined my husband when he went to run in the marathon. Like everything that he did, he did it well. He managed to run within the time frame that he planned and he looked quite refreshed considering the fact that he ran 42 km.
I felt very comfortable walking with the marathon runners. They looked and felt just like me. It is true that they have just finished running a long distance and I have walked very slowly a few hundred meters, sat on a fence and took some pictures of my husband, but apparently our effort was quite similar.
My husband went to have a massage, but I preferred to go back to the hotel. I "stole" his medal from him, because I felt I deserved it after all my "marathons" in the last year. As I was walking I saw one of the runners fall down just a few meters before the finish line. My instincts as a physician made me stop. I could see he started to vomit and appeared some what short of breath, his wife stood helpless next to him. Someone suggested calling an ambulance, but he refused and then started talking again and again about his terrible failure. I leaned down and held his hand. "I am a physician" I said and don't be embarrassed if you need any help, I told him that I do not understand what kind of failure he is talking about. He has just finished running 40 km, and I am sure that if I tried I would fall after the first few meters.
After a few minutes he felt well enough to get up. He looked at me and said "thank you" he then leaned on his wife and walked with her to the finish line.
I thought that my biggest accomplishment in the last year, was to give up accomplishments. Just do what I can, in the best way that I can, and not hesitate to lean on someone if I need to in order to do that.
Maybe I was able to transfer this feeling to the marathon runner and help him and maybe I just thought that I did.

alice

hi alice isnt it funni that 1000's run a marathon and every one is a winner
and most will have gone throu a difficult patch when it would be easy to give up the end is to far!!! then so many will give words of encouragement
then slowly your back able to carry on and finish then many years later
youknow if it gets tough you can see it throu even when its hard to walk just a few feet
alan