Thursday, May 28, 2009

Thursday already which means it will be 14 pm all too soon and the physiotherapist will be here to put me through 30 mins of exercises.

Looking forward to seeing Mathilde, she is such a sweet kind woman with a great sense of humour.

Can just be myself which takes any stress right out of the equation; really feel that I benefit from her visits twice a week.

Would have it every day if I could, as that would be even better than twice a week, but do not think that will happen which is a shame.

As soon as I notice I am up against it I try to check out what happened.

It usually helps to see what has happened; only sometimes it does not make any sense what so ever.

Just as it is senseless that although there is no feeling in my lower body, I can not move even one toe yet if there is the tiniest of creases I will feel it.

This was not so until February and since then every tiny crease, wrinkle, fold that is under any part of my body is felt.

Drives me mad at times as it can wake me up and keep me awake, often Richie can not find anything, but after he pulls the sheet straight whatever it was is gone.

Woke up too soon this morning when a range of noises all combined to shock me awake.

The lorry was next door at the house that’s being renovated they seemed to be using lifting gear, probably bringing in building supplies.

The other loud sound was a jackhammer which was being used to dig up the old foundations in the back yard.

At the same time the waste paper bins were being emptied around the play area and troupes of happy children went by and loud men's voices were yodelling at each other in the near distance.

Almost sounded choreographed but know it was just one of those happy Amsterdam coincidences.

Feel very marooned in my body today and super conscious of not being able to move at all, apart from my body shifting and sliding and slipping.

Often have to get Richie to adjust my positions sometimes do not notice right away that I am leaning to one side.

It’s a little like listening to the radio for ages before realising it’s not tuned properly, often would listen like that for hours until someone else would notice the tuning.

Then would become t otally aware it had been dreadful for ages, whats strange is that somehow I had managed to blank it out.

Often works like that with discomfort, that I can tolerate it for ages before it all becomes too much.

Today am noticing every little thing and feeling supersensitive probably be a good idea to get Richie to haul me out of bed not too long after the physiotherapist has been.

If he gets me up at 15 pm I can be back in bed washed and exercised by 16.30 and then Richie can get on making dinner and taking the dogs out and we will have a pleasant evening.

Hopefully I have been able to push away the dark thoughts now and let the sunshine in, which so very important.

Also important to acknowledge what is happening otherwise it becomes a vain attempt to rewrite history which alas is not one of my tricks.

Sadly it is not otherwise I would cut to the next scene where I get up off the bed and walk away into the sunset.

How I wish that were possible can almost imagine how it feels, what it would be like to walk again and to feel my stomach muscles when I am moving.

Know this will not happen again for me so instead get alot of pleasure seeing and hearing about other people who can walk.

Love the triathlon blogs with tales of cycling, running and swimming really enjoy their stories and their enjoyment.

Love reading other blogs and hearing about other lives and other experiences, for a time it takes me away from my situation.

It does not stop my pain nothing can as the nerves either register nothing or go into overdrive and register all sorts of pain that is not actually really happening.

Since I woke up today have had a nerve pain travel from one side of my face to the other and up and down my body.

Seems to have gone a way at the moment, am really pleased with myself for not touching any of the places that were irritating as that would have made everything more sorely.

Difficult to stop the automatic response of touching but slowly learning that I must never ever touch myself and scratching is a big no don’t do it as it causes too much discomfort.

Realised life would be different just did not realise how different it would be and that it would extend to every part of life.

The sun is shining now as the clouds clear and blue skies are revealed behind the clouds.

Going to enjoy the day hope everyone else will too.


JC said...

Morning .. I'm having my coffee and reading blogs. I hope you can find some joy today.

Anne said...

I commend you for accepting what used to be -will no longer be, and also for acknowledging that the present state of things are manageable and becoming acceptable so you can still have a good quality of life.

Noises: I use a white noise machine to sleep - otherwise I would get NO sleep. But these machines are not available to everyone, I know. When we go on vacation, it is not possible to pack it to travel (esp. aboard airplanes). So the remedy I came up with is to put the television on a channel that normally is SNOW (is not programmed for overnight), and keep it on a low to medium sound.

When my friends and I went on our cruise last month, we did that with the TV in the stateroom because all of us needed to block out the noises of people up and down the halls at all hours (ship activities are 24/7), doors slamming, and sometimes just to block out the quiet.

Just a suggestion, but it works for us.

Take care,

Rain said...

If I lived in Amsterdam I'd visit you every day if you would have me! I'd bring the pugs and the four of them would keep themselves busy and us entertained. We'd listen to old punk rock tunes and sing along with conviction!!! Plus I'd have to get you into the wheelchair so we could go out for walks along the canal and hoot at the hunky construction workers (sorry Richie!) lol
I'm glad you look forward to Mathilde's visits! Enjoy your day Herrad! I'm lazing about on the computer, trying to figure out what to plan for my dinners next week - I really hate this, if I could I'd eat in restaurants 7 days a week, but then I'd be 800 pounds!

Kelli said...

You are so remarkable. You make me realize how fortunate I am and you always make me smile. Thanks for sharing of yourself.
Have a wonderful day.

Herrad said...

Hi JC,

Lovely to hear from you, its been a pleasant day here once my pain was controlled.
Hope your day was good too.

Hi Anne,

Great seeing your comment , hope you are doing ok?

Hi Rain,

Would be great if you were living in Amsterdam, I would have no problem with daily visits from you would be right nice.

Hi Kelli,

Thanks for coming by good to get your comment.

Really appreciate you all coming by.

It gives me a big boost everytime I see your comments.



Lille Diane said...

I want to come to Amsterdam with Rain. I know she wouldn't mind if you wouldn't. There you'd be...smack dab in the middle of us, four lil pugs, 1 cat... oh did I mention Opie Taylor, my kitty, wants to come, too??? Plus, he likes dogs and people. Richie would be there, too. We'd be dancin' in the streets. Heck we could sing louder than all the construction going on around you. Couldn't we, Rain? lol

Do you have any idea how much healing you bring to others? You are a part of my day now, Herrad. I love coming to visit you via blog world. Thank you for sending us some of your sunshine. It warms me to my soul.

Herrad said...

Hi Lille Diane,

Thanks for coming by what a great idea visiting with Rain brilliant!

Sending you lots of sunshine.


Living Day to Day with Multiple Sclerosis said...

Hi Herrad! I hope that your day has gotten a little better. You are absolutely right by getting out of bed for a little while. I would love to come to Amsterdam. I think it would be great to have coffee with you in the morning and look at all the beautiful flowers you have. And just so you know.... If you had to go to the bathroom I would leave the room without you even having to ask. LOL (from your past blog) I love reading your blogs everyday. I know that you endure a lot of pain along with the sadness of not being able to walk but you need to know that you have so much to offer so many people. You are an amazing person.

Rain said...

I think the three of us gals would stir up a lot of GOOOOOOD trouble, ha ha!

Libby said...

Hey, wait a minute here.. I wanna come to amsterdam too!! i promise i'll behave...? lol! herrad, i love reading your are so positive through all that you live with, and i love that! my dr is starting me on home physical therapy soon too!

Herrad said...

Hi Libby,

The more the merrier would be a great get together.

Love the idea of us getting togther that sounds like a good laugh.


Blinders Off said...

Hi Herrad:

Thanks for the blog award. Sorry I been away for a while. I am on a whirlwind of doctor appointments.

Having a positive attitude is what makes life living with MS bearable, but when you get news, you do not want to hear from your doctors it takes away my positive thinking.

Coming to your blog helped me today, therefore I say THANK YOU.

Lille Diane said...

Oh Boy!!! We are all going to Amsterdam to visit you, Herrad. Sweet!!!

I know you've already been awarded this blog award, but since it is meant for people that I've recently discovered, that includes you. Besides you have "One Lovely Blog" so I must include you as lovely, and a lovely new friend.

Come on over to my place to gather your award.... hey no need to post it twice on your page... just know I think you are special...
so special.... la la la la la la la

Aviva said...

Getting out of bed for whatever exercise/PT you can manage and getting back in bathed, exercised and in fresh jammies is always a Good Thing. I just wanted you to know I'm thinking of you ...

Jase said...

I don't know what to say, except thank you for putting this into words. Kinda alligns other things.
I would love to follow if you don't mind.

Lille Diane said...


I have an award for you on my blog, "One Lovely Blog Award" I know you've already received it once before but I would be so tickled giving it to you again. I adore you and making you smile.

Thanks for being you.

Hugzzzz Lille

Cathy said...

What else matters when you can see and feel the sun shining on your face? Ok ENUF of that crapola, ALOT more matters - pain pain daily and exquisitely torturous cruel pain that's what matters. I won't even WANT to enjoy that sunshine if I'm paralyzed in waves of agony. So bring on the opiate-based help, THEN I'll tell you how lucky people are to have a pain-free life. When I feel LESS of it. Alot less. Thank you for not being overly brave about such a horrendous hell - in itself, that alone is a far more brave act.

Herrad said...

Hi Blinders Off,

Lovely to see your comment it has made my day thanks for that.

Hi Lille Diane,

Your comment is overflowing with joy and friendship and affection lovely.
Glad I have found a lovely new friend like you.
Thanks for the award will for sure post it.

Hi Aviva,

Thanks for your koind thoughts and comment it is very appreciated.
Hope you are doing ok?

Hi Jase,

How lovely that you have come by and left a comment and are now following my blog.
Thanks this really means alot to me.

Hi Lille Diane,

You have got me beaming now thanks for this comment you are very sweet indeed.

Hi Cathy,

Thanks for your comment especially about not being overly brave, it is not my intention ever to be brave I just get on with it which according to Richie is what being brave is about.

All your comments have me smiling and feeling good having such sweet friends.

Thanks for your friendship and support.

Have a good day.



Richie said...

MS is such a nasty disease. It took me a while to work out that it was not necessarily the part of your body where the pain was located was the problem or that things caused pain to you would not cause pain to some one else. A small crease in a T shirt could be agonising for you. It is an unreasonable condition: it just hurts because it does!
I love the way you move beyond the physical boundaries the MS sets you- around the world every day on the net- conversations online and on the telephone emails and messaging. Always sharing with friends. The way you relate to the blogs you read- I remember you pale with shock and horror after reading one of your super fit friends had fallen off her bike- "poor girl must have been in so much pain".
You are a darling!

Taxingwoman said...

Hi! Herrad What I like about your blog is you aren't afraid to reveal your dark thoughts and yet at the same time have so many positive ones.
You also have excellent tomato plants .Mine are so puny. I do like Anne, when I'm on vacation, have the tv on all night. At home I have the classical music channel on all night at a very low setting, otherwise I would never be able to sleep.

See you tomorrow.