Life, the Universe, MS & Me

Petition and govt response
August 14, 2010, 9:21 am
Filed under: life, MS | Tags: ,

Earlier this year a petition was posted on the number 10 website. It was this:

We the undersigned petition the Prime Minister to deliver on the rights of every person with multiple sclerosis to world-class healthcare, to independence and to support to lead a full life.

The detail of the petition was as follows:

More details from petition creator

We call upon the UK Government to take immediate action to improve the lives of the UK’s 100,000 people living with MS by committing to delivering on their rights to:
– Quality and specialist health care throughout life, including fair access to the right drugs and treatments.
– Personalised care and support, wheelchairs and enabling equipment to live independently.
– Support in and out of work, and support for carers.

MS is a complex, unpredictable condition with no known cure. MS can have a serious and progressive impact on a person’s physical, emotional and mental wellbeing, and can lead to severe and permanent disability. Across the UK, serious inequalities in access to drugs, treatments, enabling equipment and support services mean that people with MS are being denied their entitlements every day. We believe that the Government has a duty to ensure that every person with MS in the UK gets the quality care and support they need in order to live their lives to the full.

This was the response as posted by HM Government, unfortuately it has to be a link because it is not posted in such a way that it can be copied and pasted. Like it’s a secret or something. Bad govt.

found here

Now, I’m not really going to discuss this too much because I’m not sure what to make of it. Is it adequate or is it just a bunch of words?

I will note this though. There was not element in the response relating to support in work. We do want to work. At least whilst we can. And also need the transition to being a non worker to be smooth and as stressless as possible. My workplace gives me so much trouble. I realise it’s technically covered by existing legislation but the nature of the illness being what it is….


MS and Social Media
August 12, 2010, 10:18 am
Filed under: life, MS, Thanks | Tags: , ,

MS posse

I thought I would write to my fellow MSers on Twitter. Sure we are a disparate band but the support is amazing.

When ever a problem arises or you get a new symptom or drug the combined experiences of the group are a boon. There is always an idea or suggestion or just the support that’s required. There is so much difference talking to people with experience of MS. An innate understanding of what you mean and how you are feeling in a way that those without could not comprehend.

Also they are all a bunch of funny people. I guess your humour and appreciation of life must grow and deepen when faced with such things. Either that or MS cruelly targets good and lovely people. Full of awesome as my American friends would no doubt have it.

Well you are all fabby, if you ever need a virtual hug i’m here for you. You make life more livable.

MS and Vulnerability
December 1, 2009, 11:06 am
Filed under: MS | Tags: ,

Today i have been thinking about how people with MS can become vulnerable.  Actually i have been giving it thought for sometime.

By being vulnerable i don’t mean the vulnerability that can come with some of the obvious aspects of  our condition such as the mental and physical things, but rather the vulnerability that can come from a need to make ourselves feel ‘better’ or at least more normal.  Also the continuing hope for a cure that my possibly lead us down paths that are not necessarily good for us purely on the basis of this hope. i believe it is a powerful thing.

I think that because we are incurable and are trying to manage our symptoms, particularly those otherwise unseen by others, we can be prey to those who wish to tout their latest idea and claim to help us feel ‘normal’ or in some cases cure. Does the hope we feel leave us more vulnerable to taking these things on, does it in fact make us lose our rationality. i think in some cases it might.

We know that even some of the traditional medicine we get is not tested for our condition and while it is found to work for some of us the numbers maybe small. We try everything until one works. Mind, though, that they are not prescribed unless they have worked. i know that one of my medications only works on 36% of MSers. 36% is better than nothing and i find it works for me and obviously i am grateful.

MSers, we know that every day we can hear of some new theory or treatment that claims to help. i am almost certain that if we do manage to look at these things rationally we may find that most of them do not add up. We strive for things that will make us feel better, we clutch at straws. We should i think try and lay aside the emotions we may feel and see if these straws might actually be attached to something solid.

Lately we have been offered new research from italy in the shape of CCSVI, if you haven’t heard of it yet (unlikely) it is a supposition that MS may not be immune related but in fact be caused my constriction of the veins in the neck and chest that drain blood from the brain. It is being touted by some who have got hold of it as leading to a cure the so-called liberation procedure. The links with MS, according to the society’s of the US, Canada and the UK, have not yet been proven. Some people have criticised them for saying this. I don’t. They also say that they support the research and that they do not wish to say one way or the other whether they are going to promote it.

I think that some times it is best to have the courage to say ‘you know what? i don’t know yet’ . in some cases not knowing what to think may in fact, be the correct response. i think this is one of those times. we don’t know, so lets not get over excited but support the research.

Yesterday the UK Government had a discussion on homeopathy and its labeling. this is leading to much discussion in this country. As MSers do we rely on alternative treatments too much because traditional medicine fails us? Do we fall into the ‘you can get yourself better in one easy step if you part with £s and buy this book’ trap. In desperation i think that some people may do. It’s this that makes me feel vulnerable. that i am being battered on all sides by people who claim to be able to make me better. what if one day at a low ebb i lose my rationality and succumb to something that at this time i would declare as nonsense put about by nutjobs.

But then if it does make you feel better…

Come on now, we know a nice lie down can ease our fatigue and pain a little. Wouldn’t that be a bit cheaper than aromatherapy or acupuncture?