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.


steve said...

This ever growing web of blogs is incredibly important to so many people. You and Richie pulled BR and I from a deep dark spot last year just by being there. You've turned your misfortune (getting MS) and disability (pain, sores, vestigial appendages attached to your hips) into world community service. There's nothing more beautiful than that.

Now get back to those exercise. Your chariot awaits!

-drill sargent steve

Herrad said...

Hi Drill Sargent Steve,

I shall be hoisted and placed in front of the motomed shortly.

Thanks for coming by and thanks for your sweet words.

Have a pleasant day.



Shauna said...

I can't speak for all MSers, but I know reading your blog is a very scary experience for me. I fear disability, like most of us who have MS. But at the same time, I am always uplifted by your grace and the fact that you haven't given up on life.
Keep telling it like it is...as Steve said, it is world community service and all the world needs to hear your words, disabled or not.


Lazy Julie said...

I love the growing community of MS bloggers. I feel like I can literally say anything and I am accepted. That unconditional acceptance rooted in a shared deficiency of myelin is somewhat amazing. Blog on, baby.

Anonymous said...

Hi Herrad! No, indeed, it isn't fair. I'm glad the blogworld gives you such joy, as it does for me too.

Nice pasta shots! I make my own pasta as well, and the hanging pasta made me laugh because I hang mine from a hanger!

Herrad said...

Hi Shauna,

Thanks for your lovely honest comment and for coming by even when you find it scary.

Hi Lazy Julie,

Thanks for coming by hope to hear from you again.

Look forward to seeing you again.

Hi Rain,

Fresh pasta is the best.
Have a good evening.


Vicki said...

It is not fair, but what is?

The good part is that we -- the MS world, actually the world -- learn there are others like us, and it's not fair for them either. However, life goes on with fresh pasta and tomatoes.

I'm glad you have Richie, and I'm glad we (that world mentioned earlier) have you.

Libby said...

herrad, i love the pictures you always have up...forgot to mention yesterday that bird was perfect!!
&, wouldn't life be empty & bare without the blogs???

Richie said...

Sharing your story matters. You matter.
I am glad other people can enjoy just a little of what I get from you.
I hope that you blogging helps others and I am very glad it helps you.
love R

Herrad said...

Hi Vicki,

Thanks for coming by and leaving a comment really means alot to me seeing it.



Herrad said...

Hi Libby,

You are right life would be quite empty without the blog world.

Hi Richie,

Thanks for your comment and your love.


Living Day to Day with Multiple Sclerosis said...

Hi Herrad! There is nothing fair about MS! The worse is knowing that there are MS'ers that are further progressed than myself. Part of me feels guilty for being upset and angry about how my life has been affected by this disease. When there are wonderful people like you that are further progressed and fighting this disease and keeping a positive attitude. I love reading your blogs because you are so inspirational to me and many others.

Herrad said...

Hi Tara,

Thanks for visiting and for your very sweet comment.

Think that we do all inspire each other.



Stephany said...

Hi Herrad!

Just stopping by to say hello and hope Wednesday is a good day for you.


Anonymous said...

Hi Herrad, please check out Cris' post about an abandonned dog mommy adopting a litter of kittens, it's adorable! Here's the link! It's a 2 minute video, as a dog lover, I know you'll love it!

Webster said...

Hi Herrad,
Your blog is a "must read" for me.
You seem to have a very healthy daily routine, with thanks to Richie. And your meals! I'm hungry for pasta, now.

Hugs to you both.

Lille Diane said...

I am so hungry now after looking at your pasta and tomato pics. But the one thing you always give me when I stop in to visit you is, "food for thought". I learn so much from you, Herrad.

You always bring the sunshine to us when you visit. We, the world, I---all of us who come here to cheer you on, and let you know we are thinking about you. You are a gift. You end up cheering us on... That is the Herrad Magic.

You never sugar coat what's happening with you or to you. I feel helpless and that is hard when you are the type of person who wants to fix everything that needs mending or make things better when a hug is needed.

I think the same thing Herrad... that it isn't fair that this happened to you. I don't understand the whys. I do understand why I (we) admire you so. I think they should make a movie about your life, your daily struggles, and medical needs, your walks with Richie and the photos you take. (such splendid photos, Herrad) I think your story would make a great movie. We need more real stories about brave, kind,loving people like you.

I just wish I could wiggle my nose and come see you anytime you needed a little help, some company, a silly girl to make you laugh...

I liked what Rain said about drying her pasta on a coat hanger. LOL You know we both want to come see you.

The Award you gave me is precious just like you are. Thank you so much!!!!

Herrad said...

Hi Steve,

Is this your idea of a drill sergant?


or this



steve said...

Whatever motivates you, Herrad. :-) Both of those make me laugh too hard to exercise.

When I think of drill sergeant, I think of http://www.youtube.com/watch?v=6dRdGLTrjWs

Love lift us up where we belong
Where the eagles cry, on a mountain high
Love lift us up where we belong
Far from the world we know
Up where the clear winds blow

Herrad said...

Hi Stephany,

Blimey it is already friday, my Wednesday was good and so was Thursday drank sparkling pink wine with two friends.
Hope your Wednesday and Thursday were good too.
Especially Wednesday with your girl.

Hi Rain,

That is an incredible clip thanks for sending the link to me.

Hi Webster,

Thanks for reading my blog so regularly an sending comments really gives me a tremendous boost each time.

Hi Lille Diane,

How can I possibly tell you the emotions I felt when reading your comment.
Thank you so very much.
And you are right it is bloody difficult to not be able to do anything to change my situation.
I find it very frustrating and can imagine everyone feels the same.
A film about mine and Richie's life with this disease is a great idea.

Hi Steve,

That is a drill sergant alright bloody hell!!

Hope everyone is having a good Friday.