Thursday, May 24, 2012

Being Brave.

Dorothea Tanning

How I wish that I didn't have to be brave, I really yearn for life to return to what it was like before the diagnosis of Multiple Sclerosis in 2006.

Then, as now, I did not feel brave all I was trying to do was to keep going the best way I could.

The reality is that things will never change back, nor will the progression of my MS go into remission and give me more time enjoying life with my darling Richie.

I'm really starting to feel that my strength, what little I have left is draining away; I can feel the steady progression day by day.

It really is shitty, that I not only have to struggle to keep my identity, but I have to seemingly fight for everything I need in the way of aids to make life easier.

How typical of this uncaring capitalist society to make vulnerable people go through hell in order to get mobility aids.

I still can't believe that so much time, effort and money are spent trying to find reasons to not give me, as well as others a vital piece of equipment.

What I find makes it even worse, is when they forget conveniently to keep me informed.

Like my occupational therapist Maurits who despite my asking many times still forgets to keep me informed.

He, Maurits as well as other advisers, consistently forget to keep me in the loop Welzorg and RTD H Dorp are the worst for this.

Because of this attitude I've become accustomed to people coming around for appointments and promising that they will send me the information and never do.

There really is nothing more disenfranchising than being kept ignorant of what is going on; it is rude and totally insensitive.

I really don't understand why my occupational therapist cannot be bothered to let me know the things I should know, such as status of items applied for.

It is not just my current occupational therapist who forgets promises made; Johanneke was also very prone to making promises and not keeping them.

It almost as if this point is not emphasise enough during their training, it seems a strange to me to do a course of training and forget that it is vital to communicate with your clients.

That surely is the whole point of training for the so-called caring professions, for me that means being trained to communicate with the target group is essential.

So often forget that it is their clients welfare that is important, it often feels to me like we are there for them surely if it weren't for us they would not have work.

No wonder that I have to be extremely stoical, brave in the face of such bureaucratic insensitivity.

It's a good job that I am so persistent and able speak for myself otherwise I truly believe I would still be waiting.


Have Myelin? said...

Herrad, it is a shame. I wish I had magic words for you, but I don't.

I do care about you and think of you.

Hugs from across the pond!!!

Herrad said...

hi Sherry,
thanks for your lovely words and all your support is much appreciated.
I care about you too and hope you're doing okay.

Have Myelin? said...

I hope you're doing okay too. I know things suck.

We do what we can and I guess we can't really forget what we can't.