Always A Lot Of Waiting.

 

Alice Rahon.

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

This afternoon I had a good appointment with Edith, my mobility advisor from the council and Percy, from Welzorg.

It was agreed we will get better steering for Richie, a two handed control and they will get chin steering set up on my wheelchair so I can also steer.

Hopefully we can get wrist support for Richie in the meantime and                                        even better if this could all be organised quickly.

I doubt this will happen, it never fails to amaze me how slow everything gets done, no wonder, as there’s just too much unnecsesary burocracy.

Amazing that I have to be so active and always need to spend so much time and energy fighting for what i need, good job that I can do that.

I have an incurable progressive disease, so the last thing I need is to be spending so much of my precious time and energy fighting for what I need.

Seems strange that I have Primary Progressive Multiple Sclerosis, which is getting progressively worse very quickly, yet I still have to wait for everything.

The people we deal with know that I have MS, they can see the effects of the disease, they can also see how fast the disease has progressed.

Shame that they can’t alter their cumbersome procedures, and I, like everyone else in this situation, still have to be patient and wait for everything.

Our Love For Each Other Is Stronger And Brighter Than Ever.

The salmon fisher. By Eilif Peterssen (1852–1928)


Got good supportive feedback about yesterdays post, the feedback and support that I get as a result of my blog is really wonderful.

I have met so many good people through the blog world and been given such a lot of friendship and support by them.

Getting and giving support is so very important for us all, I am glad that I too can give support to others.

Important for me to feel part of it all and to be able to offer friendship and support to other people too.

Friendship and support creates bonds between people and that is of crucial importance for us all right now.

Especially when faced with something as difficult as an incurable disease or anything that ‘cripples’ you and stops you from living your life as you used to.

Having Primary Progressive MS has totally changed my life and Richie’s life, how we are living now is so different now.

The salmon fisher. By Eilif Peterssen (1852–1928)


Being able to talk freely about anything with Richie really helps me to cope with my MS and it also helps me to stop being anxious, panicking, worrying, getting fearful and even helps me cope with getting depressed.

It is very difficult dealing with the fast progression of my MS, it is very difficult to cope with, and luckily for me I have Richie helping me.

His love and support make everything easier and better, it is so good to have him close by, Richie is absolutely invaluable to me.

It is great to see and feel that this dreadful disease has only made our love for each other stronger and brighter than ever.

Never Going To Forget Them

Gareth's Photo Of Wales

Most days I write about my life, about being extremely disabled with Primary Progressive MS.

However despite wanting and needing to post about my situation, I do also need to post about other things too.

Otherwise I would not be able to be me, engaged with the world not just focussing on my situation and getting depressed because all I can see and feel is my own pain.

Life and my life is so much more than just this shitty disease, I can not and do not want to only focus on that aspect of my life even if it dominants our lives Richie’s and mine.

Watching the film about The Forgotten Children of Zimbabwe was very upsetting, sitting here crying made me realise that despite everything I am still better off than the people in Zimbabwe.

I had to write about it yesterday, somehow writing helped me to work through all the emotions I had felt when seeing those lovely children suffering.

So much suffering, bad enough that incurable diseases offer no perspective of improvement but for so much suffering to be inflicted because of power is revolting.

All that suffering so that one man can stay in power, a man who does not care how many lives get destroyed in the process.

In 2003 Mugabe said:

‘’This Hitler has only one objective: justice for his people, sovereignty for his people, recognition of the independence of his people and their rights over their resources… If that is Hitler, then let me be a Hitler tenfold."

Richie mentioned Mugabe had said he wanted to be like Hitler so I looked on the Internet and found the quote on this blog:


http://quotingmugabe.blogspot.com/

The film about The Forgotten Children of Zimbabwe was very upsetting, seeing people living like that with no hope was horrible.

Their lives do not matter to Mugabe who has thrown them away as if they were rubbish.

The children in the film all had great potential but unless things change soon they will also be thrown away.

Really hope that Mugabe dies soon so that those people can live, can have a future.
.
Right now he is killing thousands by starvation, others he has murdered and he has his security services watching everything people do.

I won't be able to forget this film and Obert, Grace and Michelle or Esther nor do I want to forget them ever.

Sensitivity is Essential in Assessing Needs.

Was pleased that there was such good feedback about the importance of being very clear with the people that assess us in order for them to see what we need.

Being honest with the assessor is very important, but this can be extremely difficult for us as we have our pride.

It is very difficult to be able to cope with being assessed, especially when you are just becoming disabled, it is almost too much to cope with.

Assessors need to be able to clearly see the client's disability and they need to understand that the stress of the illness and disability may make it difficult to ask for help.

Did notice that in the beginning I was trying not to see the full extent of the disability that my Primary Progressive MS was causing.

The assessors really need to understand that when the client states that they can something that they need to see what they can actually do and not what they hope they can do.

It is important to see what a person can do without crushing someone’s spirit by being insensitive.

Mary @ Travelogue for the Universe got me to think about the consequences if the assessor does not treat the client as sensitively as possible.

http://traveloguefortheuniverse.blogspot.com/

She pointed out that insensitive approach can break a person’s spirit:

‘Why take something more away from the client’ and ‘People who have faced maximum stress and survived are stronger and more resistant to help’.

They need to preserve the person’s dignity at all costs especially when their progressive disease has already taken so much away.

An Emotional Week.

Been thinking today about life and living and how we all take it for granted until something happens.

Like a progressive disease where suddenly everything is very different.

Little did I know on that July day in 2006 that within the year I would become so handicapped, and that our lives would be altered so very dramatically,

Remember that just before my first MRI I had a feeling that everything would not be ok, that this could be something that might not be mend able.

At the time I thought I would be told that I had a tumour on my brain, these were my thoughts the night we realised Daisy, our dog was very ill.

We could see that she was in tremendous pain and was very scared, luckily we had some pain killers from the vets so could give her some relief that night.

Recall looking at her and thinking that neither of us had got long to live, did not know then that she had precisely two days left.

I think now that I was very emotional that night; it was a horrible shock, our lovely Daisy was suddenly with no warning ill.

This happened on the Sunday and by the Tuesday we had taken her to the vets for the last time.

What an over the top emotional week that was.

On Friday 23 June I went off to the hospital for my first MRI feeling like a lamb going off to slaughter.

I did not get slaughtered but a month later when we went to the hospital for the results, we were told that I had Primary Progressive MS.

We were absolutely shattered, it was Wednesday, 19 July, I spent rest of the week crying and trying to evade the diagnosis.

By the Saturday I decided to get my head out of the sand and get some information from the internet.

Discovered that there was plenty of information, there were also plenty of diets and plenty of sites offering miracle cures.

Most of the information did not seem to be underpinned by much scientific research so was of little use to me.

When I discovered that I could not get into the newly built supposedly accessible local swimming pool I started this blog.

http://accessdenied-livingwithms.blogspot.com/2006/10/access-denied-living-with-ms.html

That was on 4 October 2006 and my first post was incredibly long, reads now more like an essay rather than a post.

It was interesting reading my first post, glad to see I did not write why me, then as now I think if not me then someone else and I could not wish this on someone else.

I do wish that a cure was found, or at least that the cause was known and a cure was being worked on.

Neither of those things is sadly true, it is amazing given how long people have been suffering from MS that we are no nearer to a cure.

But maybe there is no cure, we humans do tend to think we can cure everything, if it is broken we will fix it.

But perhaps we can not fix everything, we think because we have reason that this elevates us to something better than the other animals.

Shame that we think we are so superior.

Perhaps it would be better to acknowledge that we are animals, intelligent, social animals and instead of wondering about the meaning of life we should get on with living, and living in the here and now.

We need to recognise that we need each other and that the best way for us to live is to look after and nurture each other that in my opinion is the best way to ensure our survival.

Misty morning in Wales.

Tomorrow is going to be a better day.

Had a few months recently of saying I am ok every time I was asked how I was doing and kept saying it at all times.

I’m ok I would say with a bright smile, well I thought it was bright, turns out no one except myself was convinced that I was so ok.

Was trying to be positive but also trying to avoid discussion of how I was, trying at all costs to avoid these discussions.

Particularly difficult were telephone calls with my auntie Sigrid in Canada who each time she called asked me if I could walk again.

Being asked such questions time and time again is painful for us both; I understand auntie Sigrid asks as she so desperately wants me to get better.

She does not want to accept the truth and as I noticed awhile ago neither did I.

But can’t deny the truth which is that the likelihood of me getting better is very unlikely, in fact it is not going to happen.

Could not bear the pain and anguish in my friends faces and voices when we talked about how I was, really preferred to not go there.

Really wanted some respite from endlessly talking about how I was.

How I was, was shit so shit that I was just desperately trying to escape it and saying ok seemed the way to do it..

Saying ‘I’m ok’ was a good way of getting out of too many endless discussions about my condition.

Partly it was because I did not want to concentrate on the MS all the time, don’t want to just be identified by the MS.

Its bad enough having MS in such a progressed state but to have to be submerged in it every minute was and is sometimes too much.

Was trying to escape which of course is not possible it was me trying to pretend it was not happening.

If I did not see it then it was not happening the ostrich approach to life as I had learned from my parents.

Luckily a couple of things happened one of those was two friends who had doubts about my ‘I’m ok’ story and the other was my realisation that pretending the MS had not happened was causing me pain.

Realised that my behaviour was mimicking my parent’s behaviour which is not what I wanted to do, I am not and have never been an ostrich, have never wanted to hide the truth and did not want to fool myself or my darling Richie and friends.

Hate dishonesty and once I realised the deception I was trying to use I could stop and resume being me and being open with everyone.

What an instant relief and what a good move to come out and communicate how I feel with my darling Richie and all the friends.

Much better than trying to keep it all to myself, which did not work and which only ended up worrying everyone and at the end was starting to alienate me from my friends.

The MS is still ever present but by communicating how I feel I have received heaps of supportive and loving feedback.

Support is so important and despite my superhuman endeavours to go it ‘ alone’ can’t do it on my own none of us can we all need support and to give support.