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27
Aug

MCS - Must be a Cure Surely

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This is my first attemp at a blog/blogging .. .. .however you want to describe it . . .so please bare with me

I have experienced all the highs but mostly lows of suffering with MCS. The feeling like you are going to die as our body slowly feels like its grinding to a halt  and not being at all bothered or able to do anything about it, and even worse,  willing it to happen to ease the pain. Being nursed through the hours of convulsions as the body reacts to something new. The isolation is difficult to deal with. People stare, laugh or cross the road when you wear your mask. . .......I often wonder what they are thinking? The financial worries of living in a place you cant afford and what happens when the savings run out.

The highs. . when you can hug a member of your family after months of avoiding them due to fabric conditioner,perfume etc, the've unclean up their act!. Someone will stop to help you carry your bag if your in trouble. You find out who your friends really are, mine really have totally brilliant. Being called a "bloodhound" by your 9 year old niece.  Being able to tell from 20 paces that my friend washed her hair in coconut shampoo 3 days ago! When we play spot the washing,  you will all no doubt be familiar with this one, still causes much amusement. When your friends totally dechemical themselves, no hair chemicals. . check ..fairy original washing powder only check. no perfume face cream, hand lotion , fake tan, or deodorant, check so . .. . . . .. .. .. bloody hand soap got through the net,  but easily solved much to our amusement at me sniff testing my friends. Going to remote places in the UK with precious people is really special. 

Humour is much required when battling with such an illness is often defeated by the heavy blanket of depression caused by physical and emotional assualt on your body,  but mine is still there underneath somewhere occassionally wanting to escape.

Well I have waffled a lot so far. .. the point of todays blog is to explain that tomorrow I am employing the services of a nutritionist who will hopefully gain me access to the Genova testing I believe I need to get to the root causes of my illness and to reveal the extent of damage that has been caused by toxic exposures. I  have MCS brougt about my toxic loss of tolerance. I am very positive,  like Matt and Maff if recovery is out there then I want a slice of it. It is my intention to share with cyberspace what happens to me over the coming weeks and months in terms of treatment. If I can be of help to anyone else with this condition in some small way by this blog then its time very well spent.

Oh and I've ranted to my MP in a formal letter today. This is about the injustices of the local housing system that does not make any allowances for any medical conditions when allocating housing benefit. I have asked him to investigate this and my refusal for discretionary housing benefit,  if thats not for the sick and disabled who is it for. I could go on but if anyone else is in my position then get writing to your MP or I am more than happy to share my experience further.

Thats it for today - be back tomorrow

Stay well xx

 

MCS - Must be a Cure SurelyDynamic Neural Retraining Program (DNRS)

 

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  • Hi Sarah,

    I'm so happy you've chosen to blog about the journey of healing you are embarking upon :). I think the more of us that are telling our stories the better. At some point the medical profession and the government has got to recognise that there a LOT of people suffering with no help.

    No need to apologise for waffling, I found your initial paragraphs amusing and can certainly relate. I wore a mask out in public for a number of years and at first hated it but soon learned to laugh at the various expressions on people's faces. I also have a great bunch of friends and the mask gave them a great opportunity to come up with a whole range of new nicknames for me - the surgeon being an obvious one!

    Well done for writing to your MP about housing benefits and disability/illness. I got full Housing Benefit for many years because I was also getting Income Support with a disability component that was continually assessed with medical examinations. Without the Income Support I wouldn't have been able to get Housing Benefit.

    I look forward to reading your future blog posts and following your journey :)

    Comment last edited on about 8 years ago by Maff

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