M.E. & The Oscars

My name is Carole and I’ve had M.E. for over 15 years. The first decade I managed pretty well as I would describe myself as having suffered at the mild to moderate end of the scale. I was even able to hold down a part time job working from home and choosing my own hours. But after having suffered from womb cancer at the age of 44 my illness has steadily become worse and far more limitations on my ability to function normally have sadly happened.

I can almost describe my life as being like the Oscars.

We see those stars and celebrities at their very best at that ceremony,

They’ve spent hours and hours on costumes and make-up and hair that their own mothers would barely recognise them to be honest.

They certainly don’t look nor dress that way every day…who could devote that much time and effort!

Well my life is like that in a sense, When I am able to get out into the big wide world, there’s a lot of preparation gone into it and also a lot of recovery time afterwards not unlike those big time stars I imagine too.

To be able to visit family, go to a shop, take a trip to the seaside to watch the waves from my car I need to build up enough energy to be able to do that by resting beforehand. I don’t just mean hours…I mean days sometimes weeks. Then I go out and can almost appear like I have nothing wrong with me to the casual observer. My outward appearance is that of someone who is able to walk a short distance, smile and chat and be friendly for a wee while…but inwardly my body is weighing up how much energy it has right there and then to be able to keep this act up.

This charade…a very delicate act so that I can feel almost normal for a few hours and can interact with friends and loved ones to a degree that helps them feel like it’s just Carole, their friend, sister, daughter etc rather than someone who needs to be pitied or cosseted or thought of as ‘that tired girl’

It’s very important to me, Not only for my own self worth but also because I do have a very caring personality and worry for the feelings of those I’m with.

That I can have these snapshots of normality without having to live in the confines that M.E. imposes upon me for 99% of my life whilst I’m at home mostly in bed or at my best sat on the sofa. Those days are filled with pain, exhaustion, digestive, immune, cardiac, hormonal and neurological problems that anyone with M.E. or their carers or close friends know about all too well.. If I plan it right then all that can be unnoticeable because it’s happening on the inside and I am very adept now at hiding it.

This might not be the right thing to do…it’s certainly not raising awareness for the M.E. cause but to be frank…I do a lot of online campaigning for public awareness into this illness that I really don’t want my ‘fun’ time to be taken up with it too. I’ve included a snapshot of my Mother and me to show that my life really does have joy in it, even though those times are few and far between, they mean the world to me and help me through the days when i am suffering badly.

Sadly there are those who can’t do this act…they are so severely affected that they have no choice but to miss out on all the wonders out there in the world. Their lives are spent confined as not even a jailed prisoner experiences. Their lives are so limited and mostly invisible to the outside world. They never get to go to the Oscars.

European Committee of Social Rights declares levels of benefits in the UK are ‘manifestly inadequate’

European Committee of Social Rights declares levels of benefits in the UK are ‘manifestly inadequate’.

Chronic Fatigue Syndrome Isn’t Just About Being Tired

http://www.buzzfeed.com/davidtuller/chronic-fatigue-syndrome?s=mobile

Volunteer appeal for charity that wants to change care through kindness – Fenland Citizen

http://www.fenlandcitizen.co.uk/news/latest-news/volunteer-appeal-for-charity-that-wants-to-change-care-through-kindness-1-5804106

DWP blames cancer patient for her illness

I keep thinking nothing can shock me with regards to theis Coalition Government and then the DWP go right ahead and blindside me…take a look at this

Pride's Purge

(not satire – it’s the UK today!)

This letter from the Department for Work and Pensions was posted by Chris Nelson on Facebook (click to enlarge):

According to this letter, the DWP is clearly placing the ‘blame’ for having cancer on the patient herself.

Has the demonisation of welfare claimants in the UK got to the point where we’re blaming cancer patients for their own illnesses now?

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Related articles by Tom Pride:

Mother’s plea for son who lost benefits after missing signing on because of cancer operationp

The government has finally done something so outrageous even I can’t be bothered to satirise it

Throat cancer victim – “this is not the England they fought and died for!”

Let’s be clear – Tory and Lib Dem MPs have decided terminally ill patients should work or starve

Don’t turn your back. Because you’re going to be disabled too one day.

ATOS assessor found blind woman fit…

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Exercise and ME/CFS

Message from Natalie Boulton. PLEASE REPOST FAR AND WIDE!

“I would like to let people know about an evening event in Bristol “Exercise and ME/CFS – the evidence” on Feb 5th which I am organising with the Bristol North Fibro & ME/CFS Support Group. Since many charities only wish to publicise their own events it is proving rather difficult to let relevant people know about this event. However,since people from far, far away have made bookings, I realise that many people do very much appreciate the opportunity this event provides, if they know about it.

There is more information and a programme on the film website here -http://voicesfromtheshadowsfilm.co.uk/2013/bristol-event-feb-5th/

Tickets – £10 – are available on the shop page – http://voicesfromtheshadowsfilm.co.uk/shop-dvds/

A flyer is attached below

The evening will include a short 30 min version of the film – the young ME patients’ stories – backed up by a presentation by Prof Mark VanNess about the research from the Workwell Foundation with Staci Stevens and Chris Snell, previously at the Pacific Fatigue Lab California. This work is very significant in that it objectively demonstrates the reality of the cardinal symptom of ME – post exertional malaise, or the post exertional exacerbation of symptoms which can prove so damaging to patients. Their work counters assertions made by proponents of graded exercise and the PACE Trial that the fatigue and disability of CFS and ME is merely caused by deconditioning and that GET and CBT are the most effective treatment options for patients.

Dr Nigel Speight who speaks in the film will also explain some of the problems encountered by families and medical professionals when trying to help young patients.”