Sunday, July 19, 2009

Gareth's photos of his garden and countryside in Wales.

It is already Sunday 19 July, a sunny day with occasional clouds blocking the sun and a steady breeze which is standard for Amsterdam.

This morning, I guess at it was 8 am when I woke the first time, was suddenly aware again after a huge spasm seemed to pull me down the bed.

Always strange that my body which does not feel so much these days and can’t move but is so moveable and so sensitive too.

When I am sitting up in bed Richie has to check my posture every couple of hours and each time I have moved quite considerably.

He has to adjust both my upper body which usually moves to the right and my pelvis has usually corkscrewed round to the left.

All these movements have caused my tee shirt to have folds of material behind me which cause a lot of discomfort as every little fold feels like I am lying on a knife edge.

The other effect of all this shifting around is that my right sleeve is always very tightly wrapped round my arm and the armpit gets a fair amount of pressure.

My tee shirt ends up being wrapped tightly around the arm and a wedge effect is created in the armpit which is painful.

These adjustments have to happen every two hours otherwise I am hanging there in bed in considerable discomfort.

Shifting around and leaning to the right causes a lot of stress to the left side of my body as that has to try to compensate and somehow maintain my position.

This can result in a hell of a lot of tension in my neck as it tries to hold me up and in my left upper arm.

Usually I do not even notice that I have slipped and my left side is compensating and there is huge stress.

Often Richie will walk in saying why didn’t you call me and it is only then that I become aware that I am not sitting ok at all.

The longer that I am in bed the more that things like that will happen as my muscles get used less so there will be more adjustments being made more often during the day.

The other big adjustment that I have had to make is about going to the toilet, every third day I have a very large bowel movement.

Have become aware of this after several times not getting out of bed at the right moment and have done it in my leggings and while still in bed or while being hoisted out of bed.

Not surprising it often happens as the hoist straps are being placed around me, as there is a fair amount of moving around and sitting up and lying down so that the straps are properly wrapped around me.

If we have misjudged the time, then this is the moment that my body can’t contain the shit any longer and it all starts to happen.

Mortifying when this happens, I really hate it, but now it has happened several times although it still upsets me enormously it does not get me quite as bad as the first time did.

Then I thought it was the most dreadful thing ever, which of course it is not, there are worse things.

But just you try to convince yourself of this fact when it has just happened for the first time.

This sort of thing is not good for your confidence; no it really is not good, made me feel literally like an old shit bag.

Seemed to me that I had descended into my own personal hell and did not know how to get back out.

Richie was wonderful, he put the extractor fan on in the bathroom and spread out the absorbent paper towels on the floor under the shower chair and proceeded to clean me up.

All the way through he kept talking to me in a relaxed and sweet way which soothed me considerably.

In no time everything was under control and Richie had got me over the toilet to complete the bowel movement and after that Richie placed me under the shower and cleaned me and dried me and dressed the pressure wound and before I knew it I was dressed in clean tee shirt and leggings.

Next I my feet were placed in the Motomed and my legs were firmly strapped in and I could start my 30 minutes leg exercises.

Richie brought me some THC to complete the relaxation and he got the TV all set up so I could watch while the Motomed was exercising my legs.

After such wonderful treatment I was once again reassured that I was ok and Richie did still love me and the dogs did still want to be my doggies in short nothing had changed.

Despite the accident I was still very much ok, really needed to be reassured as this was a seismic shift for me.

Had known that this could happen but really hoped that I would be spared or it would not happen for quite awhile.

Found it really shocking when it happened as it really calls up some fundamental questions, am I still me or does this change who I am and the way everyone sees me?

Does double incontinence mean more than a bodily function that has become disrupted by lack of muscle power?

Does this detract from who I am?

The first time I really thought that would be the case, that incontinence of body meant my mind would soon follow suit.

And no one would treat me the same way as before I pooped in my leggings.

Of course realised quickly that this was not going to happen and all that happened is that we were made aware that we have to be more responsive.

Richie being so calm and matter of fact about it all really did reassure me that all was going to be alright.

My darling really showed me his love and care that night and he made it all good again, his loving care helps me to cope with this whole situation.

Right now he is preparing a late brunch for me, he went up to the Moroccan bakers on the Kinkerstraat and bought some of their delicious bread rolls.

He is making anchovy/hard boiled egg dressed with olive oil, mustard, salt and black pepper and a dash of pepper sauce and mixed together served on strips of easy to pick up brown and white bread rolls.

And to follow he got me Danish pastries.

Think that I am ready to sample the feast right now!


mortonlake said...

ms robs us of everthing herrad,but it cant take away love.take care love mort xx

Herrad said...

Hi Mort,
No it can not rob us of love.
Lots of Love to you too.

Celeste Maia said...

Ah Herrad, I dont know what I admire more, your strength in facing this horrible ms, or your rationality. That you could write as lucidly as you have about what is happening to you shows that you are still you. Intimate indignities are your private hell. What you convey to me is courage and a sharp mind. And you have Richie to help you through the rough patches, which is also his recognition that the Herrad he loves is there.

Nancy said...

You are an inspiration, Herrad. You have such pain, yet you are still able to communicate to us your beautiful spirit. I think I love Richie, too. I've been sending love and light. Envisioning you wrapped in a warm cocoon of light.

Richie said...

Sure Herrad when I was drinking in my company it was common to lay a trouser egg- at least you have a good excuse!
As they say: Shit happens!

Denver Refashionista said...

I love the pics.

You have a really special man in your life. Enjoy your great meal.

Libby said...

herrad, no matter what happens to you, you've handled it with total grace & dignity, as much as possible, & i admire you more every day, because i've NEVER had grace & dignity, you know?? even before i had this ms shit, i was never gracceful or dignified! [hugs & love] to you and richie!

Herrad said...

Hi Celeste Maia,

Thanks for your comment and for your visit.

Herrad said...
This comment has been removed by the author.
Herrad said...

Hi Nancy,

Thanks for your comment amd for coming by.

It is not easy, I just try to get by as best I can.

Hi Richie,

Thanks for being so supportive it makes it all easier to cope with all the shit of MS.

Hi Nadja.

You are right Richie is very special.

Hi Libby,

Blimey graceful and dignified!

Thanks for that cos I have never been told before that I am graceful and dignified!!

Thanks everyone for coming by and commenting.

Big hugs to all of you.

Lots of love,


robert said...

Good morning Herrad,
what a breath taking declaration of love this was to read. Allow me to wish you both a nice start into the new week.

Bobrobert said...

Just reading about that makes me want to poop my pants. Well hell, I just did.

Anonymous said...

We had quite a sim situation a few times with Dad and it upset him greatly, mostly the dependence on me..but I WANTED to help him, as Richie does with you...doesn't make certain aspects of it any better...I know.~Mary

Lucy said...

Herrad, never be ashamed or embarrased and yes you are still the same person who was once able to do anything. My modem was down most of the day yesterday but I did make my Birthday tribute to my son. and thank you for your encouragement. Mort has been with me in my thoughts. Mort and you and every other person who has MS. What you have described, I saw my son go through, Herrad, thank god for Richie. Alans mind stayed sharp till he drew his last breath and I believe you will also. Lucy

Herrad said...

Hi Robert,
Thanks for your comment.
Hope your day is good too.

Hi BobRobert,
Hope you had someone there to assist you!

I am nearly needing one cos I am laughing too much.

Hi Mary,
It is upsetting and it always will be it is such a blow to ones pride and such a low spot to get to could always be worse.

Hi Lucy,
Difficult to stop feeling ashamed certainly the first time.

Thanks for your love and understanding means alot to me.

Have a good day you lovely people.

Lille Diane said...

I wept when I read this post, Herrad. Not cuz what happened in your pants. Heck, that's happened to me and I don't have ms. But for the love you have for each other. How Richie tenderly cares for you. I can't imagine having someone clean up my bottom after doing a doodie in my britches. Bad enough cleaning yourself up after that. LOL

I am blessed like you are, Herrad. Superman, my boyfriend, my best friend, loves me like Richie loves you. He would treat me the same way as Richie does you if I needed full time care. How blessed we are to have "real'" men in our lives. Men who love us unconditionally.

Your writing is a breath of fresh air. Truth has that effect on me. I appreciate your ability to write what you are feeling and not just what you think we would want to read.

I love you, too, Herrad. And like Nancy said, about loving Richie. How could we not?

(((((((Herrad & Richie)))))))
Big hugzzz to both of you.

PS Richie. I love the hawk, too. It shows your spirit wears monkey pants--- which is a good thing. LOL