Bryan Charnley.
http://en.wikipedia.org/wiki/Bryan_Charnley
Woke up in lots of discomfort this morning, Richie discovered there had been a tiny kink in my catheter tube, which began to flow after he had moved my position.
After that was successfully resolved and my catheter bag filled up I found that I could do my arm exercises much easier than yesterday.
Brilliant noticing that it’s easier today, better than only noticing progression of my MS.
Listing all the things that are no longer possible for me to do is a pointless task, it only causes depression.
This is a symptom with MS, and no wonder it’s depressing, its not easy to be diagnosed with an incurable disease.
The odd thing is that despite knowing it was incurable I still was shocked to find there was really no cure.
Very strange to know and yet be so shocked, be left feeling so bereft, I wonder if others have felt the same way.
I think that I can’t be the only one, I am sure others will recognise how I feel knowing its incurable, so there is no chance of getting better.
That is the real shocker that I can’t get better and nobody gets better, that can’t be right, not after being told everything can be fixed, to finding out this was not possible.
6 comments:
Dear Herrad,
To be diagnosed with an incurable and also progressive illness of whose progression you mostly stay conscious while alive can only be characterized as a cruel stroke of destiny. To refrain from utter bitterness as you have, with a spirit that still soars despite your physical limitations, can itself only be characterized as a miracle. You truly are an inspiration. I am only sorry that the beneficence you shed on others throughout the world through your example cannot make your daily living easier. You can be assured though that through your example you demonstrate that one’s spirit can remain undefeated.
Judy
I don't think I have ever felt the way you describe, but I do understand it. Of course, my MS hasn't been as mean and nasty to me as yours has been to you. For sure, I have experienced days, years, of progression which put me into a w/c for two+ years, but then it went into remission which lasted for the better part of 16 years before things started getting worse again. But I am still able to (barely) walk with a crutch inside, or a walker outside - but not far.
MS is a scary disease. We never know what it's going to do next. I have to keep telling myself It Is What It Is and That's ALL That It Is. I try my best to stay on an even keel.
As mean as MS has been to you, I think you do amazingly well at maintaining a positive attitude. You are a shining star!!
Hi Judy,Hi Webster,
I decided after my diagnosis that bitterness was not going to be part of my life.
Thanks you 2 lovely friends for your visits and lovely comments.
I appeciate them very much.
Have a pleasant Friday.
Love,
Herrad
When I was diagnosed with a certain illness my bf at the time, a very, very take charge man, said: We will fix this.
Ha, but there isn't a fix. That knowledge for you is much more stark because the nature of your illness is much worse than mine. But always, your dignity comes through.
I have a mild case but fear of relapse is ever present and interferes with normalcy. My shots are experimental but I feel lucky to have something and support research w/ my being studied. You speak so well of your challenges and still share interesting artwork and pleasant happy times. Thanks for inspiring us and sharing your thoughts. Love, Mary
Hi Mary, Hi Mary,
Thanks to both of you lovely friends for coming by.
Good to see your comments, thanks for your kind words.
Have a pleasant Friday.
Love,
Herrad
Post a Comment