It Is Inspiring Visiting Blogs.

 
Son et lumiere (1976)
Victor Reinganum.
http://en.wikipedia.org/wiki/Victor_Reinganum

I was inspired reading today’s post by Rhapsody in which she says

 ‘’ Life is filled with ups and downs. The trick is learning how to be fluid and move continually between the ebb and flow’’

A visit to Rhapsody Phoenix’s blog @ Rhapsody Phoenix Authentic Expressions is well worth it, I like going there and reading her posts.

http://rappingonamelody.blogspot.com/2011/06/life.html

I recently met a blogger called Ricky @ Cubanrick he has also been diagnosed with MS.

http://cubanrick.blogspot.com/  and Nicole @ My New Normals …Looking For Normal.

http://www.mynewnormals.com/  who also has MS.

Also met Mike @ This is my life and all that goes with it, Mike also has MS

http://franko2366.blogspot.com/

Also met another blogger Chib @ Hadubini - My-o-scope

 http://ebchib.blogspot.com/

It is always good, I think to meet other people, and read their blogs, I find it stimulating.

I am also enjoying visiting blogs I already know like Ana @ Hella Heaven

http://hellaheaven-ana.blogspot.com/ and Mitch @ Enjoying The Ride

http://www.enjoyingtheride.com/ and Muffie’ @ Kaleidoscope Muff

http://kaleidoscopemuff.blogspot.com/

Very good day today visiting other blogs, I have enjoyed visiting and reading their posts.

I hope tomorrow will be a good day and I will get good news from Agis that at last I will get the support cushions, which I urgently need.

That would be the excellent news I need this week.  

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He promised this for 4 visits and at our final appointment before I was sent for a second opinion, he gave me an out of date book a bout MS, first he got me to promise not to look on the internet.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.

Every now and then recently I have had moments when I think ‘It’s not fair’ sometimes followed by copious crying as I cry over what has happened to me.

Of course it is not fair, would it have been fairer if someone else had got the MS and not me?
Don’t think that would have been fairer for the other person.

Why should I be spared when MS is something that anyone can get?

It is like Russian roulette we can all be the ones hearing the diagnosis.

With hindsight I realise now that I have had MS for a long time just never noticed it: only noticed the other stuff that happened.

If there was something noticeable, like the time that I could not walk properly for a few weeks, when it returned I thought it was amazing and never questioned it.

And why would I? I was after all just following logic if it goes wrong keep trying and then one day it works again (so no need) to investigate that anymore.

I never questioned things like that, ok I fell over but doesn’t everyone fall over sometimes?

I am also not superstitious so did not put any supernatural meaning on things for example was very aware of words that I could have used instead of amazing such as miraculous.

Do not believe in miracles as I am convinced everything has a rational cause, I might not always understand everything but believe everything is understandable.

And what was happening to me seemed very understandable until my birthday in 2006 when suddenly my walking got much worse and with it my balance.

This was not understandable at all in fact could not understand what was happening so went to the doctor and was sent to the neurologists who sent me for an MRI.

Finally there was a diagnosis and we finally understood what the cause was of all the events that were not explainable, now we understood.

Very quickly it was clear that there was no help and support available from the neurologist who never took the time to explain the diagnosis properly.

He tried to stop us from looking on the internet promising time and again that next time he would tell us everything.

Which he of course never did, all in all have never met anyone so badly equipped to deal with people.

We both independent of each other explored the Net for answers to our questions and we both found a lot of information.

There is a hell of allot of information but difficult to find out the information that has been tried and tested.

There is a lot of stuff about diets and of course there are those that offer cures (that appeal to our vulnerability but) of course have no basis in fact.

After researching MS and diets for awhile a writer friend of mine suggested I get a blog and write about what was happening to me.

This seemed a brilliant if somewhat scary idea which I fully embraced when I could not go swimming at my local pool.

It has just been rebuilt at huge cost and was receiving huge subsidies to make it accessible and when it opened the disabled access was not ready and would not be finished for at least 6 weeks.

The disabled access was round the back, none of this was exactly in the spirit of the law on access.

I immediately started my blog and quickly derived great benefit from being able to express myself and ventilate all my emotions about the diagnosis and the disease.

Later on I found other MS blogs which gave me a tremendous boost, rememeber the first time someo0ne put a comment on one o0f my posts.

Wow that was quite something, at first did not dare to leave comments on blogs but gradually did and quite quickly got to know some bloggers.

Now can not imagine a day without posting on both my English as well as my Dutch blogs as well as posting photos on a blog for the dogs and one about diets and one Not in this house for other writing.

These day can’t imagine a day without reading other peoples blogs and putting comments on theirs and receiving comments back.

Really love the support and encouragement that I get from the blog world and love the fact this is totally reciprocal.

The Internet and blogs are real tool for communication which we need so that we can support each other by communicating our stories to each other.

Those stories are important they help us understand each other’s situation and what the challenges are that are being faced.