Wesselygate: Heroes v Bullies = No Contest!

I'm always inspired by so many stories of humour, resilience and courage in the face of illness. Not least today.


Harry Moseley, the amazing 11 year old Birmingham lad with an inoperable brain tumour who's been giving all his energy since diagnosis to his campaign Help Harry Help Others .

I first heard of him when I rejoined Twitter this summer. He sells wristbands to raise funds for Cancer Research UK. Harry has gained friends, celebrities, kids just like himself, adults who admire his fighting spirit and optimism - and that smile! - all over the place.


As I write, Harry's Mum and family are facing the agonising wait of the results and prognosis for Harry after an MRI scan yesterday. Harry has not opened his eyes since surgery two weeks ago today, but remains responsive to stimulus from his Mum, as she encourages him with the prayers and well-wishes of his Twitfam as he calls us all. What an inspiration through the darkest times!

Also today, my friend's lass Jenn is doing a sponsored skydive for the local Barnsley Multiple Sclerosis Society in South Yorkshire. She herself has courageously battled with MS for the past six years, remaining determined and resilient in finding ways of raising funds. We're right behind her (or underneath, today, considering the altitude involved in her dive!) as she is nearing her target of £1000 and stepping out of that plane!
Jenn's sponsor page for Barnsley M.S. 

One of the most challenging parts of living with Myalgic Encephalomyelitis, for me, isn't coping with the multiple disabling symptoms. Not the pain. Not the exhaustion. Not the disrupted sleep. Not the discomfort. Not the brainfog that makes me sometimes act or sound not like myself but somebody losing their faculties! Not the inconvenience and bereavement of having to reframe my former chosen path to walk a new road. I can find all the gratitude and attitude for those things.


No, what's the challenge for me, is to face the everyday mockery and disbelief of those who think they know more than us about our illness.

To face the uncertainty of the research and the future of recovery when so much is expected and so very little delivered.

To face the well-meaning but frankly patronising comments from those I thought now understood more about me and M.E.

To face the withering, mystifying onslaught of misinformation on TV and on national and local radio, in the press, seemingly everywhere.

To face the chipping away at my whole personhood and place in society. To know some consider this hell a cushy "lifestyle choice." These days I even find myself wondering how people see me and what they actually think when they encounter the me they see from outside.

This is a challenge I'm so determined to meet. To spot the heroes and recognise the blustering bullies who try to usurp their place on the podium! Not with the anger and grief that well up at the injustice of being derided and scorned as well as being genuinely ill. But to get past that, to hang on to my humour and graciousness, laughter and compassion and courtesy in the face of it all.

To hang on for dear life to the bigger picture where the truth shines clear and I have a choice not to be dragged down into bitterness or wallow in self pity. I've managed so far through all these years of M.E., and I'm darned if a school of thought with its own vested interests, no matter how bullying and big it is and how loud its mouth and its clout, is going to bring me down now.

We have lots of real heroes in the field of M.E., too.

The scientific researchers who are evidently doing all that they can in the face of what is now showing itself up as staggering, spine chilling opposition and schoolyard bully spoiler tactics! Doctors and health professionals who do the real work of informing themselves, keeping up to date with research and trying to do the best they can for their patients. Other sufferers who keep us informed, encouraged and entertained when the picture would otherwise look blank or impossibly dark; bloggers, tweeters, Facebookers, IRL heroes who bring us hope.

These M.E.heroes are not hard to find (I have a list of some bloggers who inspire me, in the sidebar to the right, if my dodgy sense of direction hasn't deserted me!) if we look for them and don't get distracted by the headlines. Even though they may not be invested with the power of other dominant characters to get their voices heard! Talk is cheap.

I'm rooting for Harry, and Jenn, today, and all who are fighting so inspirationally, young as they are, for their illnesses to be better funded. 

 One day, we'll be able to name the illness we're fighting for, too, and faces will not go blank with ignorance, distrust or open hostility. Then the fight can go on being for the funding and the endgame. Not for the most basic awareness! 

Meanwhile, as we find ourselves still in this tunnel of controversy, the fight is also to keep from self-destructive hate and loathing of ourselves and others, or becoming paralysed by despair and cynicism. We need urgently to hang onto hope, not in some projected future utopia, but right here and now in the scratchy bedsheets and blaring sensory overload of our lives with M.E.!

shouty opinions, get you down or stop you being who you still are deep down inside!




Let's fix our eyes on the heroes who inspire us. With dignity, honesty and compassion we can grasp the facts with hope and determination, so we can do our part as well as we possibly can. Then those bullies will gradually slip back into soft focus where they belong! 


Invest in ME

M.E. Association

M.E. Research UK 

Whittemore Peterson Institute for Neuro-Immune Disease 

Some Mothers Do Ave ME

Daily Mail article about Michael Crawford's long slow recovery from M.E.

TBH I'm struggling to concentrate, sit up, balance, etc for more than a few minutes at a time, today. But on the whole, apart from exhaustion, nerve pain, balance and co-ordination issues that have dogged me rather this week since I took a service  for a single hour the week before last, it's been a good week. The joy of friendships and the start of Lent, spring flowers, laughter and all life's sweetness makes up for the M.E.-sodden bits of life! It does for yours truly, anyway!


But I wanted to share this today. I spotted this article in the online Daily Mail (Please see link above).


It's an encouragingly honest article by actor, comedian and singer Michael Crawford, beloved by my generation as bumbling Frank Spencer on 70s sitcom "Some Mothers Do Ave Em".

Michael tells of how he was stricken by M.E. when, like many of us, overwork and getting run down  (in his case the final trigger was working in a hot padded "fat" suit!) led to a virus that triggered his immune system's meltdown into M.E.

He found himself unable to pick up, even though previously so fit, after a bout of seemingly innocuous flu. That had happened to me, too in the Autumn of 2005. Well, the flu did. And the meltdown into M.E. Not the padded fat suit!


Michael had his worst period of "bust/crash" of M.E. for a whole seven years. During this time, like me, he sometimes wondered if his career was over. He retreated to complete rest and recuperation in New Zealand, allowing his body time to recover in its own way, as I'm also in the middle of doing, though I am only now just over five years into recovery. I hope by the time I get to the seventh year, I too will be back to cooking with energetic gas, like Michael, forever, or however long a "boom" of recovery I'm granted.

I'm well aware, with all the different sub-types of M.E we suffer, not all of us can achieve such a remission. Some have never had health and freedom from M.E. from a young age. I always count myself very blessed and fortunate to have been able to do so much, achieve so many of my goals before being floored by M.E.in my 40s (though it was tapping on my shoulder much longer than that, of course!).

Like many of us, Michael took the time to alter his diet to as healthy an option as possible to give his body all the help he could. I lost six stones in the time I've had M.E. (it was the debility of M.E. that slapped the weight on me in the first place of course.) One of the few "advantages" M.E. has given me is the space to sort out my Type 1 diabetes, which, although still unpredicatably erratic with unannounced hypoglycaemia at any hour of day or night, at least now is better controlled through carbohydrate counting than at any time during my adult/working life.

I bless Michael for sharing his own journey and his story all too familiar to at least some of us with M.E., those who are neither the least nor the most severely of all affected. I know some of the most severely affected find yet another story of celebrity M.E. recovery in the media is more than a little hard to swallow, and my heart goes out to all who feel this way. This is not an easy road, and the media has so long mocked and ridiculed M.E. sufferers that the resilient humour of many is tried to the limit.

Read the link and judge for yourselves.

From my personal point of view, his story inspires me. It gives me a chink of hope in the clouds of future uncertainty. In my own long, long slow miracle of painfully slow progress towards recovery, looking back on the little ways I can be useful now that were closed to me just a year ago as my career and life slipped through my grasp, I see hope that I too can dance on life's stage again, restored to some semblance of my former self!

God bless you, Michael. Be gentle with yourself and enjoy every moment of your new lease of life!