About trying to live with ms and discovering that suddenly most places are inaccessible and that life as a handicapped person is very different.
Sunday, February 14, 2010
Happy Valentine´s Day.
It is very difficult to put everything into words, think that is because emotions are easier to feel than to describe.
Sometimes they are so complicated it is even difficult to explain to myself let alone explain to another person.
I am very open and honest in my blog but still do not manage to write about everything as not everything can be put into words.
How to explain emotions when often I do not understand them myself.
Its not that I do not want to tell, I do, but I need to tell my story in such a way, so that people do not spend all the time getting too upset and miss what I am telling them.
Think that what I needed when I heard the diagnosis, was to know the truth of my situation right away, not as the neurologist kept promising me ‘at the next appointment’
He promised this for 4 visits and at our final appointment before I was sent for a second opinion, he gave me an out of date book a bout MS, first he got me to promise not to look on the internet.
I of course looked it up days after my diagnosis.
MS is upsetting, still can't quite believe that I have this incurable disease, think that somehow this fact is difficult to understand because it is unbelievable that there are things that can't be cured by doctors.
Thought for ages that someone would come up with a cure pretty soon, but realise now that this is not likely to happen anytime soon.
Then I noticed I was pinning my hopes on a 'miracle cure' strange seeing as I do not believe in such things.
As far I am concerned there is no such thing as a miracle cure or miracles and yet recently I got so down I was almost ready to believe there was such a cure.
It is abit like dreaming of winning the lottery even though you never buy a ticket, or having a mystery uncle you never heard of until he dies leaving you untold wealth.
At first I was slightly hurt and upset that neither cure nor unknown uncle had materialised.
Now I am back to where I was before the cure and uncle fantasy and realise it is up to me to stay as fit and optimistic as possible under the circumstance of having an incurable disease.
I know there is no cure for me which makes me even more determined to be as optimistic and cheerful as possible.
Think and feel that this is my choice, just like when I want to stop living, both of which I feel should be my right to decide.
I intend to write about how it feels until I can not write anymore; even then I want to keep on writing with the help of Brain fingers.
http://www.brainfingers.com/
http://www.heservis.nl
This is software that you direct with your thoughts; it is the software that Stephen Hawkins uses.
http://simple.wikipedia.org/wiki/Stephen_Hawking
Good to know that this exists, I am planning to ask for a demonstration of the software, would like to see how it works.
Am very curious how it feels to be able to write your thoughts, think Brain fingers sounds like the way to express yourself fully.
Recently I visited Nadja’s blog and read about Debbie’s blog and how she wanted to contact other blogs.
http://ysestringer.blogspot.com/
Went over to visit right away and was reminded by reading Debbie’s blog
http://walkwithmems.wordpress.com/
Of how difficult it was telling friends and family that I had MS, took me about a month after my diagnosis to contact everyone.
Enjoyed reading Debbie’s blog, she is new to the blog world and is looking around for other MS blogs.
Sure she will get support from the blog world, which is a friendly and supportive place.
Had a pleasant surprise when I received a mail yesterday from Don Joe telling me he was following my blog after finding me on a friend’s blog.
http://workforced.com/
And today I got a mail from Dan Digmann that he had just found my blog.
http://danandjenniferdigmann.com/
I have visited them, really like meeting new people.
Have a good Valentine’s Day everyone.
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7 comments:
Herrad,
I really enjoy your blog and am glad I found it! We have posted your site to our home page and appreciate you sharing our link with others.
Thanks for all you do to help us move forward.
Dan
i will go and pop in herrad. tc love mort.xxx miracle cure?i think we both know there isnt one,but miracles do happen.we keep the faith.xxx hi to richie,bet he ate all the chocs he bought you lol.
Hi Dan,
Thanks for finding my blog, it is always good to meet new people.
it was a pleasure writng about you, I always like to share links.
Hi Mort,
Thanks for coming by, hope you had a good Valentine´s Day.
Thanks both of you for coming by and leaving comments.
Hope tomorrow is a good start to the week for you both.
Keep warm.
Love,
Herrad
Happy V-day, Herrad!
I hope that you, Richie, and the pups have a LOVELY Year~ Forget V-day being ONE day right? xxoo. Kris!
Hi Herrad,
I appreciate you wanting to share until you "think" to the computer for us to follow your life.
HUGS
It's now close to five in the morning and the words of yours did keep me awake. Can't really more than thank you for that.
Please have you two a wonderful start into the new week.
Hi Kris,
Thanks for your visit and sweet words.
Have a good year too.
Hi Stephany,
It would be great to have software that fully expressed how you felt.
That would be good.
Thanks for coming by.
Hugs back.
Hi Robert,
Thanks for coming by, words are not easy to write down as soon as something is thought of it changes.
Thanks the three of you lovely friends for coming by and making my day.
It is Monday now, have a good start to the week.
Big hugs to you all.
Love,
Herrad
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