Sunday, June 28, 2009











Pictures from Wales from Gareth.

Had a down day yesterday, think that the heat was the main reason for that by early evening really felt I had enough of all of this.

MS really does suck not only do you have to put up with all sorts of shit but it also fucks around with your physical appearance.

Just thinking yesterday how shitty it is, to not only lose the facility to move, but to lose body weight at quite an alarming rate.

My body is totally different now, legs are very thin, and so were my arms, like twigs last August but have built them up abit with 30 minutes exercise everyday.

Sadly can't do quite much for my legs, do use Motomed for the legs for 30 minutes every day.

Just did not expect my body to change so drastically, I was 5 ft 6 inches and medium build.

Now there is much less of me, to me it is like night and day how I look now compared to 2006.

There has been a pretty drastic change then I looked like an attractive woman in her fifties now I look like an invalid in her late sixties.

My breasts have vanished, my bum went last year and my face went quite gaunt it is hard to come to terms with these changes.

Really hard and quite a big shock which is not easy to come to terms with so quickly.

Not easy at all is an understatement if there was one.

Suppose if I look at it logically then I should have realised that being inactive means muscles are not being used and therefore they become slack.

This stands to reason it is just I did not expect such drastic changes in how I looked.

And this of course influences how I feel, which is not happy that my self-image has taken such a pummelling.

Am determined to rise above this but this will cost me dearly and it hurts like hell
that this too has been taken from me.

It is amazing how much the body and the mind can take, quite amazing really.

Have been thinking alot about the past and realise that for me it really is all gone now.

There are lots of questions that have become self evident now especially when looking back and discussing the events with Richie.

Some things for which there are no answers as I can't ask my parents anymore and others because events have long since overtaken them.


Today right now can’t imagine wanting to be around for too much longer not if I am 24/7 in bed, had not realised the effect being in bed has on the body and on the mind.

As the muscles are not being used everything gets slack and starts to ache from the constant pressure of lying in one position.

The mattress constant changing pressure stops me getting pressure sores on the rest of my body.

In some ways I can see that I could survive ok indefinitely in bed if it were not for my muscles.

If it were all down to Richie’s love and care I would be restored now I am convinced of that, Richie’s love and care is absolutely wonderful.

His care has made this very long period in bed bearable; knowing that he is there for me has made all the difference for me.

Think that this very hot and sticky muggy weather is very hard for me and I may also be down because of Michael Jackson’s death.

Will do my best to lift my spirits by reading other blogs and posting comments that prospect makes me feel better and the fan is helping me too.

Hope everyone is having a good day today am determined I will too, perspective is everything think mine is back to looking for the good things in my life.

14 comments:

Rain said...

Hi Herrad!!! I'm so proud of your determination! It really is easy to lose sight of life isn't it? I've lost sight too many times to count, but it takes a special person to even consider rising above it. Isn't next week the week you can finally switch over to the wheelchair? Did I remember July 2nd as that date? I sure hope so. I know what you mean about Michael Jackson. I've been feeling sad too about it. I felt the same way about the Crocodile Hunter...and a few of my favourite wrestlers...we get so attached, it's very sad. I do hope you can have a nice rest of your Sunday. I'm still waiting for that rainstorm, we had lightening and thunder all night, but so precipitation to cool things down. I feel it in the air though! bye for now,
xx

JC said...

Just stopping by to say HI

Been busy doing lots of nothing.

I do hope you have a better day.
I know what you mean about life changing so fast.
I used to do lots of things.
Now, I don't.

I try though ... and for today that's enough

May you be at peace today my Dear

Rhapsody B. said...

Blessings....
I read your story and I am saddened and happy at the same time. I am saddened by your harrowing journey through MS and thinking of my best friend who has it and the thought of her getting to that place as well. It is heart renching to think of far less to live. I am happy because you have a sustainable love that endures. Through it all you are blessed.


Thank you for sharing.

Herrad said...

Hi Rain,

Thanks for your support.
Hope you get the rain soon and it cools down for you.

We had a spot of rain and since there is a thick layer of cloud and it is very hot and humid.

Hot and dry would be better.

Hi JC,

Hope you had a good day, I felt better as soon as there has been some air flow.

Abit too hot and damp which makes it unbearable for me.

Wonder if that must also be a problem for you?

Hi Rhapsody,

Thanks for coming by, your friend will hopefully never get to this stage.

Hope she does not and there is no reason that she will as everyone's MS is different.

One thing is for sure for everyone enjoy what you have as you never know what will happen next.

This is it the real thing not a dress rehearsal.

I made the common mistake of thinking I had all the time in the world and I did not.

Hindsight is always illuminating wish.....

Ah well that is life.

You are right about our love for each other it does sustain us.

Thanks for coming by have a good week.
Love,
Herrad

Chekoala said...

Dear Herrad

Your blogs often make me think of the haiku written by one of Basho's disciples:

Since my house burned down
I now have a better view
of the rising moon
(Masahide)

ta muchly

Erika C. said...

Wow, this sounds challenging and yet you are still in there feeling it and looking at what you are feeling. I think awareness counts for so much.

Recently I too felt challenged by the difficulties with my son. The sad thing is that it really wasn't my son, but more my worries about my son, whose medication-(he was put on some medication for the first time in his life 6 months ago and my husband and I were and are very conflicted about it-for acting out behaviors) is being cut back slowly over this month, I was worried about him acting out again in the way that he was when this all came to a head six months ago. But he is doing really great now overall. So it was mostly in my head.

My challenge is with my anxiety and wish to control things and that really got me down last week. I felt guilty for complaining a little on my blog and yet I needed to do that.

I am feeling much better now. Going to that dark place was a reminder of the work I still need to do on myself but not work with judgment, just slow, patient, loving work.

My thoughts are with you. I too have a friend with MS, a mentor at a job many years ago. She was so amazing and wise. I have lost touch with her and am afraid in a way to contact her, for fear that things are going badly.

love,
Erika

Cathy said...

I'll say one thing Herrad, if I were stricken with MS (as my brother is) I'd be very much the pitiful recluse who never did a thing. For some crazy reason I'd get the nutty idea that every illness or disease is a sign to stop engaging life, and I'd take to my bed content to wail about my woes and watch TV. My brother does it all the time and that's the real reason I pity him. Not that this will kill him, but that he's letting it. You seem to know your limits, and what's holding you back. I'm told this is wise, frankly I don't know but the important aspect is that you're honest about it all and don't seem to make excuses. I admire that greatly, bless your heart.

Herrad said...

Hi Chekoala,
Thanks for the haiku it has a good sound.

Hi Erika,
Thanks for your comment, you are right we need to look after ourselves so slow, patient and loving is the best way.

Hi Cathy,
Thanks for coming by, your poor brother hope he realises that he is making things worse by not making the best of things.
It is I think the only way.

Thanks all for coming by really nice to turn on he laptop and find your comments.
Have a good day.
Love,
Herrad

Cranky said...

Herrad - some of your posts can be hard to read, but still their content is moving and so worth reading.

I have seen the muscle atrophy in Skip, too, resulting in smaller legs. Oddly, the effect is more pronounced in one leg vs the other. She broke her ankle falling out of her wheelchair last year and that leg has much less muscle mass than the other. Not sure why, she hasn't had the use of either in years and has spasticity in both.

Richie and you have something very, very special. And, of course, Spike and Marleen are there for even more unconditional love!

Herrad said...

Hi Cranky,

Thanks for visiting and reading means alot to me.
Richie is my darling, he looks after me so very well.
Despite the shitty bits we still have alot of fun together.

Love,
Herrad

steve said...

Hello Herrad -

Have I told you lately how much I appreciate your daily missives? You give voice to so much that BR is unable to express. All the change. All at once.

I'll see if he wants to make another video when I get home.

Herrad said...

Hi Steve,

Thanks for saying that, it is nice to know.
Hope BR feels like doing a video clip tell him I shall look forward to seeing it.
Have a good home coming.

Love,

Herrad

steve said...

Thanks, Herrad. I will. This is how I feel right now."

Anne said...

Hi Herrad:

It is very hot and sticky here in Pennsylvania too....thunderstorms nearly every evening. I have a fan on me no matter what room I am in because the stickiness makes me moody.

It is a waste of time and money to run the a/c here because the doors are open and shut so many times a day -- the money may as well go right out the door.

Our doggie is doing better, healthwise, although he is still laying around most of the day. He is not as active as say this time last year and does not appear to be in pain.

We finished the meds the vet gave him and now he gets a baby aspirin every day and one capsule of Glucosamine for his aching joints.

Thank you for stopping by my new blog...I think it will be of interest to many once the word gets around that it is there.

I am consumed with making sure there is enough documentation for each post and am worried that the posts are tooooo long and therefore many will not read them. There is an abundance of information for those who want to learn. So thank you for your comments.

About appearances, I know I have changed alot in the past year - when I looked at the photos from Niagara Falls and the ones from the cruise last month. I have gained weight because of the steroids (and no doubt my cheating on the diet too!!), and know it does not come off easily.

MS is a crappy disease and affects so many parts of our bodies. You are fortunate that you are able to still do your arm and leg exercises, get nutritious food and have loving care at home. I am so proud of you. You are a great example of "Living with MS" and somehow I don't think you hear that often enough.

Have a great week, Herrad.

Love,
Anne