Enjoyment Not Denial.

Guillaume Cornelis van Beverloo

http://en.wikipedia.org/wiki/Guillaume_Cornelis_van_Beverloo

Got this wonderful comment today from Stephany @ Soulful Sepulcher


http://bipolarsoupkitchen-stephany.blogspot.com/

It is a very moving comment, so much so that as soon as I started reading it I cried.

Tears splattered my glasses. so that I could hardly read the text at all, had to stop and very carefully try to dab my eyes.

Responding became difficult I was peering around the splashes and smears on my glasses.

Am posting Stephany’s comment here as I found it a fine comment which I want to share.

‘’Hi Herrad,

I think women, as strong and spirited, interesting, funny and smart (YOU)still, though confident, have a small part of wanting to be accepted for who they are in physical appearance, especially, when it changes.

Our appearance changes with all years of our lives.

We change, but not always from illness. Our bodies evolve over time, and I know for a fact your smile and sparkle in your eyes are the same as when you and Richie first met.

Take a look at the photos, and what we see is a real, genuine human being, and a woman who with great pride is sharing with the world, the deep loss she feels.

Don't forget, you are you, no matter what. Richie only sees you. Sure, the daily grind is gruelling for both of you, but you know his heart is aligned with yours.

Both of you are to be admired.

I always want you to know I feel privileged to know you, even if through this format. I will mourn losing you. Find solace in the fact, you have friends that will rally around Richie; I think you may worry about that. And I'm not afraid to talk about the inevitable, because you talk about it. That's the gift you're giving us. And on that note, I hope to be here writing to you for many, many more years. :)

HUGS

love and hugs

Stephany’’

She is right, despite; the MS, my age and my spinal sclerosis I still want to be the woman I was physically before the MS hit me so hard.

Still look at the pictures of Richie and me in 2001 in our shower room wall, I was 50 then, wish that I could look like that now.

Do not mind that the passing of time, nine years should show, just do not like to see the signs of the MS and my distorted spine showing so clearly.

My spinal distortion has become worse due to having to lie in bed for so long, that progression was inevitable due to my loss of muscles in my torso.

Nevertheless it is still another blow to my pride and my vanity, especially since I took a lot of care in my appearance.

Always had smart black or charcoal coloured well cut trousers for work, teamed up with sharps tops and in cooler weather smart zipped tops and in cold weather my favourite voluminous black mohair cardigan.

The cardigan was shaped like a dress with long sleeves and when zipped up it had a high collar which looked rather cute on me.

Sadly I can no longer wear it as there is too much material which would just become too lumpy behind my back as it could not be pulled down far enough sitting in the wheelchair.

Gave it to our neighbour Willes who wore it all through the winter and right into spring, she looked magnificent in it.

Have given away several items of clothing that I used to enjoy wearing, think now that there were some that I denied myself unnecessarily.

Oh well now I am aware of my tendency to deny myself, that will not happen again, do not think that denial is my best option right now.

I think that right now I should be enjoying my life and my precious time, my intention now is to make the best of everything.

With Richie here to encourage me and the support of friends I am sure that I will succeed and have a good summer.

Here's To Life, My Life And My Unvarnished Truth.

Cobra.

http://en.wikipedia.org/wiki/COBRA_%28avant-garde_movement%29

Posting those photos of me the day before yesterday was quite worrying, glad that I decided to post the pics.

For a moment before I made the decision I wanted Richie to take photos that would not show everything.

Wanted photos that would not show how my body has become distorted, but at the same time show me.

Realised what I was doing, which was constructing a myth, which is not me, not the real me that this blog is about.

Felt suddenly abit like the Wizard of Oz hiding behind smoke and mirrors, soon as I got that image I knew that I could not do that.

How can I carry on being open about what is happening and at the same time sanitise my image, there was a touch of farce about the whole thing.

It was scary to post the photos, but as soon as I had done so I felt relieved, it felt good to be honest.

It was easier to write honestly about what I am experiencing, but photos of me that was worrying.

Funny that, as is if keeping them secret would somehow make any difference to how my body is these days.

Strange discovering this I am glad that Richie reminded me that despite everything I was still me.

That despite everything this horrible MS has done, I am still cute and still very much me, this has been so good for me.

Everything has clicked into place for me, as I realise the truth of still being me, really understand it now.

It really does not matter what you look like, what a disease does to you, because the important thing is the person.

Which is my mind and my intellect, my sense of humour, my mentality and my emotions and my will power..

Glad that posting a few photos has made clear to me what is really important for me, posting the photos has helped me a lot.

It feels like this simple action has clarified things and made life easier for myself, can now celebrate my life and my take on it without wasting my time on trivial things.

It is life that is important to me, not the window dressing, interesting to see that despite being so ill with MS that I still wanted to touch up my photos as if anyone would expect me to look like a model.

Here’s to life, my life and my unvarnished truth.

Cold, Wet and Grey Sunday

Beryl Cook.

Sadly the weather has not been so good here this last week; it rained every time I wanted to go out.

Guess if I can't get a dry day I will just have to accept it is wet and go out nevertheless, not easy for me as rain is not my favourite.

Have to get warm clothes organised, really need a jumper and a pair of trousers, most of my clothes are just no longer suitable.

Lycra tops are no good now as they roll up and can not be pulled straight, not sitting in a wheelchair.

All my trousers are no longer any good as they cut into me sitting and they are not cut right.

In a wheelchair you need trousers that are made higher at the back to compensate for sitting down.

I need easy to put on clothes; most of my t-shirts are too much of a wrestling match to put them on me.

Think this is the time to shed all the unwanted clothes, give them to friends and to the clothes collecting container up the road.

Have been looking online for wheelchair clothes, what I have found is so sad looking that I could barely look at the pictures.

Very sad and slightly frumpy looking clothes on a website called My Life, which put me off looking further yesterday.

Some websites have photos of their products but a site like IT FITS has mainly line drawing of their products.

These bad drawings do not give you any idea what their garments will be like, and they are also not cheap.

Seems that no one has thought that people in wheelchairs not only come in all sizes and ages, but have varied tastes too.

But they do have taste though, not something any of the sites I have seen have seemingly thought about.

The sites I have found, all seem to want to sell a sad and unattractive clothes which is a real turn off for me, I used to be a very sharp dresser.

Sadly no longer not since the wheelchair has become an established part of my life.

The clothes I have seen were horrible and lacking any inspiration seems we are not just handicapped but need to look the part too.

Not me I still want to dress well and I will.