Wednesday, December 30, 2009

It Is Life But Not As We Knew It.

Compared to Monday, yesterday was so much better and today I am typing using both index fingers.

At the moment my other fingers are not catching the keys, recently I have been spelling good as godo and thanks as thankos and a few other thigns like that.

I always add a fair amount of 0 in words as well as 7 and occasionally a few 2’s, weeding out all the letters I did not mean to select is often a hell of a lot of work.

Keep telling myself not to moan so much, and then I think why shouldn’t I occasionally vent my frustrations.

This is after all quite a fucked up situation, here I am, totally handicapped, my movement restricted to my shoulders, arms and head.

I am not going to ever get better again; nothing is going to restore my body to what it was, and all that has been taken from me now.

Used to be a fit woman, loved walking, enjoyed going to the gym and dancing, especially when Desmond Dekker played at the Melkweg or the Paradiso.

All that is gone now and now I am happy I still can use my index fingers, I really am happy about that.

Terrified that my index fingers will stop functioning, so Monday was extremely worrying for me.

My index finger keeps me connected with the world and that has been very important, to be able to be in communication with so many people is wonderful it really is.

It keeps me well and truly in the here and now, gives me the chance to contribute, allows me to speak and to communicate what it is like for me.

And it allows me the chance to see what it is like for others, it is good to exchange information and support each other.

It is very difficult coming to terms with such a life changing event as a diagnosis as MS and then one of Primary Progressive too.

And still I sometimes feel slightly apologetic if I moan or cry, got reminded by a friend yesterday that I need to cry that it relieves the tension and that I do not need to feel bad about that.

Mort was right to remind me of that fact and I thank him for that.

Of course I did know that myself but sometimes I do need to be reminded not to be so hard on myself.

Staying the here and now is not easy as looking to what lies ahead comes so naturally to me, think that I learned to do that at home out of self protection.

I am going to do ym best to not jump ahead to stay in the here and now and to enjoy what the moment brings me.

Looking out of the window on a very cold and cloudy day, a lid of grey clouds has settled over the city and the snow that came down last night is till there, it is snowy and icy here today in Amsterdam,


Stephany said...
This comment has been removed by the author.
Anonymous said...

Mort gave you very good advice! And Herrad, I don't think anybody who is your friend will ever think badly of you when you talk about your struggles and times of despair. I think the opposite, that we all wish we could rush over to be with you and share some fun and friendly moments! Alas, we do that via the internet, and I for one am very grateful for that!

I'm just waiting on those guys to finish the basement. They'll be here in about an hour. We ended up getting a load of snow, there must be about 3 feet out there! I'll try to take some pics if the wind calms down!

Talk to you later,

Peace Be With You said...

"I sometimes feel slightly apologetic if I moan or cry, got reminded by a friend yesterday that I need to cry that it relieves the tension and that I do not need to feel bad about that."
I so agree with your friend. I send you my love.

Herrad said...

Hi Stephany,
Thanks for your supportive comment .
You are correct we all have our struggles .

Hi Rain,
You are right that was good advice from Mort.
Thanks for your support .
Hi Judy,
Thanks for your support and love, it means lot to me.

Thanks for coming by, also for your friendship, love and support..
Big hugs ton you all.

Cranky said...

Herrad - so glad that functioning of your fingers is improved today. Sounded quite a desperate situation yesterday.

Friko said...

Life can be a bugger, can't it!

The very best wishes and hopes for the new year, Herrad, may it be as happy as can be.

Don't let the bastards grind you down and carry on appreciating all the help your nearest and dearest gives you.

Nancy said...

I think you are amazing - strong and brave - and an inspiration. Life can often hand us something that feels unbearable (I had a brain tumor that paralyzed my face, took my hearing, etc.), and sometimes all we have is the now. You help me stay in the now. I love having your friendship and your view of the world to look forward to reading. You are smart and worldly. I hope and pray your index fingers stay mobile.

Travelogue for the Universe said...

Hi Herrad, your strength and optimism are always welcome. Best wishes. Love, Mary

Marion said...

Oh my. I try to remember that I'm in incredibly good shape: got my dx 21 1/2 years ago, and I can still walk (with a cane or walker), see (when I can keep my eyes focused together), work (part-time/ flex-time, telecommuting)... even got my voice back after losing it a couple of times, so I can talk and even sing.

So why am I so down? Because my friends see that I can walk, & expect me to walk further. They hear I can sing, & expect me to sing (opera) the way I used to... I can work, so look for a better job...

MS crushes some of us, & nibbles others of us to death like a flock of ducks. I'm so glad you can celebrate your index fingers! I will try to celebrate what I can still do, and ignore my ignorant friends.

Muffie said...

Hi, Herrad,
Funny you should bring up this topic. On a message board to which I subscribe ( the question recently arose about our sharing our MS problems with others. I wrote that I tend to bottle things up rather than sharing. But I know that your way is much healthier. I have always admired your strength, and when you express honestly how you feel, I see that as a strength, not a weakness.


Have Myelin? said...

Oh yes, cry all you want. I am not afraid to cry when I need to. I make no apologies for any tears lost and you should not either.

Glad you have two fingers to use instead of one. That would suck!

Herrad said...

Hi Cranky,
Thanks for coming by,
Monday was dreadful, really worried me to bits.
Was very relieved when my fingers did work again.
I am going to check out Brain fingers, the software that Stephen Hawking use to operate his computer.

Hi Friko,
Thanks for your encouraging and supportive comment, I won't let the bastards grind me down I really will not not ever..

Hi Nancy,
Thanks for your visit and thanks for sharing about your brain tumour and how it affected you.
Losing your hearing, etc must have been extremely difficult for you to cope with.

Hi Mary,
Thanks for coming by and lifting my spirits with your lovely comment.

Hi Marion,
Lovely to meet you, hope you come by often, shame you do not have a blog.
Think it is a good idea to ignore your ignorant friends.
En joy everything you possibly can.

Hi Muffie,
Thanks for coming by appreciate your visit.
Sharing how you feel with others is often difficult but is worthwhile, hope it will work for you, it is very good and far better than bottling it up and hurting yourself even more.

Hi Sherry,
Thanks for coming, good to see your comment.
You are right crying is not just ok but good too.
I am going to try to stop being so apologetic about it.
Two fingers are for sure better than one.

Thanks everyone for coming by and giving me such a boost.
Big hugs to you all you lovely people.
Have a good 31 December tomorrow.


Anonymous said...

May you all have a peaceful and loving change into the new year.

Webster said...

Hi Herrad, I think of you as a rock - you are so strong to be able to take all that MS has given you. When the days of coping well pile up eventually you just HAVE TO cry. When that happens remember this: erosion is pretty.

And you have the cold, but pretty snow, while all I have is grey skies and, for the next few days, rain. I won't even be able to see the full blue moon on Thursday. (pout)

Marion said...

Thanks for your reply, Herrad!

I don't have a blog -- I have a web site:
and another for my annual concert to support the Accelerated Cure Project for Multiple Sclerosis:

It's hard to admit that I can't perform or direct opera or G&S any more... but if I organize a concert for others to sing in, they have to let me sing at least one song! ... even if it isn't up to my own standards. And the Cure Project can use the ticket money to support research - so maybe others won't have to go as far down the MS road...

We all do what we can. You host friends on your excellent blog, and give folks a chance to speak - thank you!

Herrad said...

Hi Robert,
Have a pleasant New Years Eve and a good day tomorrow to start the new year.

Hi Webster,
Thanks for your words I will remember that this erosion is pretty when I cry.
It is very cold we have the heating on today, should be snow and a cold northeasterly wind brrrrrrrrrrrrrrrr.
As usual it is too cloudy to see the sky so no blue moon for us too :((

Hi Marion,
Thanks for coming back so soon and thanks for the link to your website, I shall visit and I will pass it on to other blog friends.

Thanks all of you for coming by and leaving comments really appreciate it very much.
Love that we can communicate and share our knowledge and support each other.
Have a pleasant New Years Eve tonight.
And a Happy New Year to you.