This seagull up on the cliffs yesterday; "Fly my love, fly !" I thought.
There are so many challenges in my life at the moment , especially a new opportunity to get involved at the very highest levels, fighting for services for people with ME. On a practical level I have no idea how I will be able to manage it, for my wife is far too ill to be left. Yet somehow I know that doors will open, for they always do when the time is right.
This is exactly the right time. So much is coming together.
But what a fight. Without resources, I am a full-time carer, my companions are very ill ME sufferers, without an infrastructure, without power, we are taking a stand up against one of the most powerful vested interest and lobby groups in the world, the medical insurance industry.
For ME is much bigger than AIDS or MS.
At stake is whether extremely ill people like my wife and countless others, spend the rest of their lives , as they have spent decades already, in agony with no treatment and no cure. Not a penny is spent by the Government yet on physical research into this World Health Organisation defined Neurological Illness.
They are going to hear from us.
7 comments:
Another moving blog - and a Van Morrison fan I see. I cared for mum with myasthenia gravis for 8 years so know a little of your
worries. It was a fight from start to finish to get help and care.
The lesser known, rarer neurological diseases are extraordinarily hard to handle.
I have several friends with ME and MS in various stages. Quite a hot spot round here actually.
Best wishes for all you efforts. It makes me so cross that people have to fight so hard to get their entitlements. I've just written to my MP about my benefit being stopped, but I'm not holding my breath. Toady
Absolutely Tumbling, best of luck with all your endeavours. Your wife has been so umlucky with her health, but lucky that she has a husband prepared to fight for her and others. I remember reading horrible (derisive) articles by Victor Lewis-Smith years ago on 'Yuppie Flu' and felt outraged then. Thanks for the book info. Saw we have the same favourite film!
A very moving blog. Being a full time carer must be so hard, do you get any respite at all? You have to fight to get anything from social services, but if you don't shout loud you never get anything, it maybe time to shout . If you've got this wonderful opportunity, somehow you must take it.
Just realsied you're in Walsingham, how I love that place, brings back memories of the time Lynne and I sopent wekend there again when we were about 17 and still at school, it was winter an d covered in snow! I'll have to blog about it sometime.
Act first think later .. something will turn up to sort how you to manage to high level lobby and care for your partner as well.. he who hesitates is lost!! And strong stirring stuff like that...I'd do the one about Men in bed in England tonight and St Crispins day but there isnt enough space!! Go for it!
Agree about the government not doing enough for people living with ME, I think it is quite appalling. I worked at Kelling Hospital for many many years, nursing patients with ME. One of the residents has been there such a long time. He is a gifted person, and was once a tutor at Norwich, teaching Art. Lot of controvesy in the local media news of late, about small community hospitals may close, because there are not enough funds to keep them open. These small hospital are vital that they remain open, and not have ward closures, it is very difficult for some of not being able to care for their loved ones at home. Thank you for your message, re the address for ordering of your book, I do hope that it sells well, sure it will. Ah, Blakeney, remember taking my two children there when they were quite small, very fond memories. I love the Walsingham Shrine, I went there to light some candles for a very dear friend that passed away a few years ago. Camilla.
I missed this one yesterday! Oh, the seagull so beautifully expresses your feelings. You have one hell of a fight on your hands, I am simply in awe of your energy and creativity. If I could only reach out, maybe this is a pathway - and add a little more strength and support! Here goes . . .
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