Tuesday, June 02, 2009
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.