Thursday, January 15, 2009

Carnival of MS Bloggers #27

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Meet Herrad

Amsterdam, The Netherlands

Primary Progressive MS diagnosed 2.5 years ago
Blogs at Access Denied-Living with Multiple Sclerosis



The meaning of life is to enjoy it, that's it nothing more and nothing less.

It's easier than you think you have to always remind yourself that there is always more than one perspective, view of any moment.

When you are down it's very difficult to see the beauty that is all around us as it is to be positive.

But it is very important even imperative to be positive

In order to refind the positive try to look at things from various perspectives.

It's quite mechanical at first but it will be until the depression lifts and you can be positive again.

When you start to express yourself fully again and then you can once again see the beauty around you and within yourself.


Recently been having a lot of very good days, not my body just my mind, luckily the weather has been generally good too, most days blue skies and sun.

Makes me aware again how short life is and that it's the only one we have, don't know about other people but recall worrying so much about things that did not matter as if I had to be perfect and this is a dress rehearsal for life and not the real thing.

Aware too that the MS has progressed faster than we thought it would, wish I were wrong and hope that I am but if it carries on as it has then in another year I won't be able to sit up and eat and talking and breathing independently won't be possible anymore.

Then I shall exercise my right in Dutch law and get my doctor to help me die, it's not something that I look forward to hate the idea of not being here with my darling Richie and all you lovely people.

Richie said that I was getting ready to die which is not entirely correct as I am doing everything to enjoy my life now and what I have which is lots and the last thing that I want is to die.

But I will do the only difference for me its sooner rather than later and won't be a surprise thing.

Really wanted to get really old with my beautiful darling Richie was looking forward to it very much and still am.

My life and my dreams are far from over, intend to really enjoy this Christmas.


Day by Day

I have done well to reclaim my life but only mentally and not physically as I needed a wheelchair for getting about outside right away and within 3 months of diagnosis I could not walk down the steps anymore.

After 4 months was full time in wheelchair and after another 5 months couldn’t get out of the chair anymore and transfer to an ordinary chair or to bed or shower chair and needed help with everything.

Could still write and cook a bit, simple things like like scrambled eggs or stir fry something prepared for me to use and could still use knife and fork and hold a glass or cup in one hand and eat with the other hand.

Had additional stress as we lived on the second floor without a lift so was stuck indoors for about a year only getting out twice a week to rehab when I was carried down the steps by the men from the mobility bus and their scary chair.

Sadly by the time we moved a year after diagnosis could not go out on my own as my hands could no longer function very well, could not use a key or open doors or even my purse.

I needed help with everything but could still type and pick up things and eat, could do things with both hands by the end of summer a year after diagnosis I had a catheter and could only type with one finger and needed even more help.

Now 2 years and 4 months later I am totally handicapped and need everything done for me.

One good thing now is that I found myself again and no longer feel useless and somehow less of a person and a woman, now I know that I am still the same person still as dynamic as ever and still the same sharpness.

Had to get through a morass of feelings to get here and I have by experiencing all the highs and lows of the last couple of years and thinking things through and refinding my sense of humour.

Now I have reached where I am now which is in a lot of discomfort and pain and in bed all the time because of the nasty pressure sore and can now consciously enjoy everything that I have like Richie and his love and care and a nice flat, friends and our dogs and the fact that I have realized that my body is crap but my mind is fine, in good shape and life is good.

Taking each day one at a time, now look forward to our wedding anniversary on 19 December and then Winter Solstice and Christmas.


Find it difficult to deal with questions such as:
What does the doctor say?

In my case nothing as they do not know and can not make a prognosis.
Or are you any better?

No and I won't be better.

Or about the wound when do the doctors think it will heal?
They have no idea and say slowly.

It's very worrying to have an illness where doctors can not help me which is weird as we are all brought up to think the doctors can always help.

Just not with something like primary progressive MS then doctors and patients have to gamble.


Really noticing that my condition is getting worse, I am losing strength for example the muscles in my back are really weak as I have been lying in bed since 21st August.

My back is getting so weak that I find myself slumping forwards after have sat for a wee while in front of the exercise machine plus finding some simple things more difficult these days.

Some days find typing with my one usable finger is really difficult one minute it is ok and then I can't click on anything say open my mail or just sending a mail or copying and pasting or just clicking on a mail to open and read.

And eating is horribly frustrating as I can't sit up enough and eating in a slumped position is difficult plus holding the fork/spoon or cup is often very difficult.

These days I am also in constant discomfort and pain which really wears me down, try my best to remain positive but sometimes it's not easy.

My big problem is that in my desire to remain positive I do not acknowledge what is happening plus in my desire to not only be positive but in order not to burden others with all the details of the progression of the MS I hardly say anything about what is happening.

Really weird way to behave and does not protect anyone, realize too that have been keeping lots to myself so have not talked about the fact that I know that my condition is deteriorating which means that I won't be alive for as long as I had hoped and that is strange to think about and to contemplate dying sooner than had thought and want.

Today has been a reasonable day had a few spasms in my legs one big one when the doctor visited and the the chip off my tooth and the bad news from Richie that I can't do the exercise machine everyday as sitting up in the shower chair has caused soreness and irritation in the skin around the wound.

The shower chair has a cut out bit around the bottom and the edge of the cut out bit has stressed the skin around the wound which is causing blisters and soreness and dry rough skin.

Not good so we will have to be really careful now as the wound is still healing and getting smaller though it is still quite big it's now 4cm.

It is taking a long time for the pressure sore to heal but it is now halfway healed so it's crucial that the progress is maintained.


A big thank you to all the wonderful people in the US who collected money for me recently which will help me to get an alternating air pressure wheelchair cushion.

They raised 600 us dollars which is brilliant and that will be put towards the 2,900 euros that the cushion costs here.

Thanks for all your support it is very appreciated.

Given me a huge boost and that has helped me to cope with having to be in bed for so long.

Thanks all you wonderful people.
Herrad is my Inspiration!!

This concludes the 27th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on January 29, 2009. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Monday, January 16, 2009.

Thank you.
Comments for this post.


  1. Herrad is a beautiful, inspiring person who always reminds me to keep my own brand of MS in perspective.

    And to actively seek joy, because it is not always handed to us. Sometimes it needs to be found.

  2. Hi Lisa,

    Thanks for your mail and for featuring me on the Carnival of Bloggers.
    I saw it when I visited Shauna's blog and was very touched by seeing 6 of my posts featured as this month's entry, wow!
    Was very moved and howled abit at reading that I am an inspiration to you and howled some more when I read Jen's comment and also reading what Shauna said about me.
    Alot of howling but it did me good.
    Went to sleep last night feeling good about myself.
    Thanks for your support it is really needed and appreciated.