Back from Cardiology this afternoon.
Good news - I have a heart!
Better news - it's still beating!
Best news - first ECG came up normal, as did my BP, (so it should, controlled by ACE inhibitors).
Consultant wouldn't leave it there, though. My heart's hammering above 100bpm on a regular basis and the frequent palpitations this past month are cause for further investigation. Taking into account my 27 years on insulin with frequent sudden warning-free hypos, my family history of dad's stroke at 45, maternal Gran's death at 52 from atherosclerosis and heart failure plus plenty of valvular heart disease, angina etc thrown in for good measure, I suppose it's best checked out.
So now I'm waiting for appointments for
(a) Echocardiogram
(b) 24-hour Holter monitoring tape
and
(c) another session with the cardio consultant before Christmas.
In other news, we have this exciting development in M.E. research.
Time to put all the disappointment of XMRV behind us and learn to spell "rituximab". (Why does it look like something spelled backwards to my random thought processes?)
BREAKING NEWS: ‘Chronic fatigue syndrome eased by cancer drug’, New Scientist, 19 October 2011
67% of patients in the trial saw symptoms improve.
Some later relapsed, but researchers are addressing this to see whether 'periodic doses of rituximab could permanently keep the symptoms of CFS at bay'. With an illness characterised by a relapsing-remitting pattern there's obviously going to be much more serious research needed, but it's an encouraging start. Hopefully this will open up yet more discoveries and eventually some reliable answers to free M.E. and/or CFS patients from so much suffering.
Bit brainfoggled and bamboozled now after tiring day under hospital lights and on impossibly bumpy buses, so will get head round this properly another day. Thanks to all you lovely people who were thinking of me today. As Morrissey sang, in one of his more positive moments, "There is a light and it never goes out." XXX
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
The more-than-excellent NICE GUIDELINES BLOGSPOT which is always picking up information for those affected by M.E., today points us in the direction of a U.S. news item.
I haven't any spare energy to sit up typing to discuss this today, but needed to mention this.
Apparently in the U.S.A., a warning is being sent to the national blood banks advising against taking blood from those with "Chronic Fatigue" as it is still vaguely called over there.*
This is because a new study (so many unrelated studies with no joined-up thinking or focus, aaaaaaaargh!) has suggested a link between Chronic Fatigue and certain kinds of leukaemia.
My thinking's a bit woolly this morning. Before I go lie down in a spinning, burning vortex, though: What does this mean? Is it actually proven? Will we read next week that it isn't a valid study and it's all back to being in our heads? Will those with M.E. always be the last to be informed?
Rant over. Judge for yourself by clicking on the link above and taking a look at Dr Speedy's blog today, which includes a link to the US TV report.
Stay strong but also be gentle with yourself.
*The terms 'chronic fatigue'/'chronic fatigue syndrome' etc are vague and unhelpful in defining this disease. They concentrate only on one of many symptoms, which is then frequently misunderstood as normal 'tiredness'.
It's like calling cancer 'liability to pain and not feeling A1 syndrome'. Nobody would allow that, and rightly so!
Research points very strongly to the fact that Myalgic Encephalomyelitis (M.E.) is a more accurate name for the disease, which is not just some collection or 'syndrome' of self-reported symptoms. The name M.E. refers to the disease's widespread inflammation and multisystemic neuropathology.
CFS is a dismissive, unhelpful umbrella term which discourages further research and encourages devastating misunderstanding of a disease which cripples thousands and has lead to death on more than one occasion through such ignorance. M.E., on the other hand, refers clearly and correctly to the proven underlying pathophysiology of the disease.
