Friday, July 24, 2009

Some days are different than others.

Pictures of Amsterdam.

Had planned my day totally different to how it started, had meant to write a post for my blog not long after I had done my arm exercises and Richie had done the leg exercises and massage.

I had intended to write about my relationship with Richie and how I am so very happy that he is here with me, and I do not have to go through this shit alone.

Instead Richie discovered on lifting my left leg to do the first set of leg exercises that I had pooped in the bed, this really shook me up and I hope this is not the beginning of daily bowel incontinence.

Something that I have been dreading for ages, no wonder I woke up early this morning in such great discomfort.

I just thought I had my usual rather sudden waking up caused by a combination of a violent leg spasm and a rubbish container being cranked up and emptied into the waiting truck.

Now I realise that I got woken up by the urgent need to go to the toilet, these days I can not read the various signals my body tries to give me.

This is because I get so many signals most of which are about nothing as the myelin around my nerves becomes pretty non existent.

All day and night I have feelings of great pain travelling around my body, most of which are not relevant as there is no actual pain.

I took each pain very seriously until I noticed that a violently painful shoulder would be ok after 2 or 3 minutes but then my ankle would now be hurting.

Or my right wrist or it would start up in my back and travel right down my body and back up.

The other thing has happened because of lying in bed for so long is that I am both sensitive and insensitive.

Something’s I can not feel and other things like a tiny, almost unseen wrinkle in the sheet goes off like a ten gun salute and once woken up I will not be able to sleep unless Richie comes over and pulls the sheet until the wrinkle has gone.

Often I feel something that is not there which makes it difficult for Richie to resolve for me so I can get back to sleep and hopefully he can too.

Now that I have been in bed for so long the muscles in my back have not been used and have got very weak indeed.

Difficult for me to do too much to change the situation until I can sit in the wheelchair, as both in bed as well as in the shower chair I am reclining and not sitting.

Because of how severe the wound was I was not allowed to put any strain whatsoever on that area.

So have been reclining and in fact sort of sitting on my lower back, guess how the rich Romans used to eat reclining.

It is an uncomfortable way to sit and I have been doing my best to cope with it but will be even happier to be able to sit properly again soon.

Richie was brilliant as always this morning; he got me out of bed with the minimum of discomfort.

Then he proceeded with is usual tact,m to clean me up, showering me and dressing the tiny wound and then liberally oiling my legs with almond oil which is lovely feeling and a delightful fragrance.

He dressed me and after I finished I did my daily 30 minutes of leg exercises at the Motomed, had just finished when my lovely visitor our good friend Jeanet came to see us.

A lovely visit and very pleasant way to recover from the rather stressful start to our day.

It could have been a lot more upsetting and stressful but luckily Richie is so very sensitive and caring that even this horrid situation gets dealt with so gently by him, that I did not get unduly upset.

It remains an unpleasant situation which I find really upsetting but no longer think that I will be treated differently now.

Not easy but I am determined to not just enjoy and make the best of things but to also keep valuing myself and appreciating myself and to realise other people do too.


Cranky said...

Herrad - Skip and I are enjoying a quiet, rainy afternoon here in Maine. I read your post to Skip. She said you have a great way of describing things; sometimes she feels just as you do. Glad Richie dealt with your bowel incontinence so well. When things like that occur, they can freak me out because, like you, I worry if they are indicators of future problems to come. So, I can't say I have the grace under pressure he demonstrates. Glad you could get all cleaned up and back onto your day, including your visit.

Herrad said...

Hi Cranky,

How very lovely to get a comment from you on your holidays.

Really appreciated, thanks alot.

I am learning to take each day as it comes (bloody difficult!) and to not try to look into the future.

Hope you are both having a good time.


Richie said...

We all knew MS was a shitty disease.
I will always be there for you.

Amelia said...

Hi Herrad,
Just as you have been doing for me, I wanted to pop by and say Hi.
I am sorry your day started as it did, but isn't Richie amazing to be so sensitive about how he deals with things. You both work so well together, that it enables you both to deal with things in a dignified and positive manner.
Martin and I look to you both for constant guidance and inspiration.

Sending you lots of love and the biggest of hugs
Amelia XxXxX

Herrad said...

Hi Richie,
Thanks for being here and being so calm and sensitive.

Hi Amelia,
Thanks for coming by and leaving a comment.
Hope you are feeling better and your relapse has gone away.


steve said...

Herrad, darlin' -

This is one area in which you and BR differ. You don't realize it has happened. He has the sensation that it is happening all the time, even when it isn't.

Either way, it makes for a very unsettling day.

BR had another catheter change today, and it went very smoothly. No pain. No spasms. Yippee!

Herrad said...

Hi Steve,
Thanks for your comment, you are right either way makes it an anxious day for sure.
Brilliant news that BobRobert has no more spasms and pain.
That is the best news bloody excellent.
Have a good weekend.
Herra d

Nancy said...

Glad you are feeling okay about this morning. You are very valued. You have a wonderful mind, Herrad.
BTW - after your blog about wanting to feel your legs walking - I walked an extra mile today and kept you in my mind - sending you walking thoughts. You and I had a very nice walk, indeed. We saw plenty of pine trees, the beautiful golf course behind our place, two creeks, and plenty of flowers lining the road. They were tall, like daiseys, and purple.

Take care. Have a great weekend.

Stephany said...

Hi Herrad, I read all of your post and sat here thinking. It all just becomes a distant memory, the embarrassment, the way you hoped Richie would be (thank you Richie for giving her the dignity)...and all I can think of to say is to keep on going, it's going with the territory of the nasty MS now, and nothing it brings on will phase any one of us, so write about it and let it go here.

What a hell of an illness.

Celeste Maia said...

Thank God for Richie in this situation. What a great man you have, Herrad. How nice that in the end you had the visit from your good friend and the day became much happier. Sending you hugs from Portugal.

awb said...

It's a horrible feeling! For me I don't have the feeling until it's time to go, but then don't always have the legs to get there. Glad it worked out for you and it didn't ruin your day, it amazes me how strong you are!


Herrad said...

Hi Nancy,
Tall purple flowers like daisies sound like the sort of flowers I like.
The smell of pine must have been a gorgeous smell.
And I like the sound of the creeks and the iimaculate golf course.
Sounds like a very enjoyable walk.

Hi Stephany,
Thanks for your sencouragement to write about it all warts and all.
Need to be told this as sometimes wonder should I write about it all as I do.
But tend to think yes as that is me being open and honest no other way I can be.

Hi Celeste Maia,
Richie is truly wonderful.
Jeanet visiting yesterday was perfect, seeing her was brilliant.

Hi Andy,
Thanks for your comment, the first time I cried for ages I was devasted but Richie was so sweet and gentle in how he dealt with the situation that it really reassured me.

Thank you for all coming by and being so supportive.

Webster said...

Here's a link to the ad about motor neuron disease. It's hard to watch, but oh, so accurate.

I hate that your mornings are so painful, but love that you have Richie and get so much pleasure from your pets and from reading all of us.

Herrad said...

Hi Webster,
Thanks for coming by and leaving a comment really love it.
Specially nice to find yours as the first one today.
Have a good day.

Herrad said...

Hi Webster,
oops thanks for the link.