Pumping, Pilates and Pffffffffffffffffffffffffffffffft!

I am SO sorry for the long gap in bloggery since mid April. Some days earlier in the year, it was all I could do to read and retain the last few words in my brain-fogged brain, let alone write!

Thank you so much for sticking with me and continuing to follow.

I'm more touched and grateful than I can say for your interest and patience here.

As many of you know all too well, M.E. is a fluctuating illness.
One day, coping. Next day, crashed.
One day, doing to the point of overdo. Next day, unable to raise your head from the pillow.

Combined, in my case, with Type 1 diabetes, I find my blood sugar often acts as a thermometer of how M.E. is bamboozling my body. The past months have helped me put this in focus in several ways. Struggling, but learning every day, for which I'm profoundly thankful (when I'm not gritting my teeth and screaming hoarsely at the sheer frustration of functioning at less-than-optimal level so much of the time!)

My cardiac arrhythmia, uncovered at the end of last year, after several particularly severe hypoglycemic episodes, is now being tackled with a 2.5 mg daily dose of Bisoprolol. That doesn't mean it's been cured or fully controlled. I can go for longer symptom free at the moment, at least. Then other days, my heart is glugging and giggling through my ribs for no obvious reason. I'm learning to live with it, but don't enjoy the sensation! The cardiologist seemed quite open to the idea that this might be related to M.E./POTS/OI, but the GP seems now to be denying the ectopic beats the cardio clearly picked up and mentioned (but didn't write in my records, apparently!)

After 28 years of Type 1, my diabetes consultant asked if I had ever considered an insulin pump. Considered it? No way could I ever afford it, without the NHS. Only a tiny percentage of UK Type 1s are pumpers. Fewer than in the USA or mainland Europe. Having tried everything to achieve good control, my glucose levels still plummet to dangerous low levels or soar to ludicrous highs with no apparent provocation. Although I'd always been less than enamoured by the idea of being attached to a pump 24/7, I finally jumped at the chance to try it. I haven't regretted it for a second in this first two months of pumping. Nothing ventured, nothing gained, in my book.

Humphrey Pump-hrey - the new "man" in my life!

The insulin pump has helped me to see exactly how things affect my sugar levels. The pump releases minute personalised amounts of basal insulin (as little as .1 unit divided into 20 doses every three minutes over an hour day and night) and exact bolus amounts to suit carbohydrate intake through the day. As I'm learning to tweak these amounts to suit my lifestyle, I've very quickly seen the truth. My control can be near perfect and exact, until I do something overtaxingly aerobic, or requiring lots of brainwork, or physical effort. Then, up to 12 hours or a day or so later, my blood glucose will rise as much as 9-10 mm/ol in a matter of a couple of hours. It can go from mid-range of normal (6) to dangerously hypoglycemic (16) with no carbohydrate consumed or other factors present. Equally it will sometimes stay impossibly low (1.9-2.8) without provocation and unresponsive to dextrose, sugar or jelly babies galore. M.E. raising it's ugly head.

...and introducing Rita the Glucometer Maid. Acts as insulin pump hand set, via bluetooth and  as an inveterate nag when glucose low or high!

Because of being able to keep an even closer eye on insulin effect, carbohydrate effects and glucose profiles, I can appreciate the real effect of exercise. My daily results show clearly the way physical and mental effort and subsequent exhaustion is expressed by my immune system etc pushing up my sugar levels (instead of dropping them, as exercise should in a normal body). Although this can be erratic, I hope bit by bit to be able to learn to tackle these effects in order to maintain better control than ever. Perhaps along the way, I can help professional health workers to understand more of the realities of M.E. and its effects on other conditions like Type 1 Diabetes. After all, Type 1 is another autoimmune disease, and autoimmune diseases often flock together like birds of a feather.

No - can't manage much but simple balancing & stretching yet!

More recently, quite by accident, I heard about a very local, very gentle over-50s Pilates group led by a lass who has had an M.E.-like illness herself, and is currently in remission. I went to the first session purely to give moral support to my cousin who wanted to give it a whirl. Because the instructress is so aware of my limitations (and those of others in the class with conditions ranging from  fibromyalgia, multiple chemical sensitivity, IBS, and arthritis to rheumatism) I have been able to continue with the classes on my better days.

 Sometimes I try to push on beyond my limits. I push MYSELF that is. She doesn't push me! I pay for it, of course. The instructor gently reminds me that pushing myself is not the right thing to do. She often steps in subtly and discreetly to make things more achievable when she notices me, or anyone, struggling. She always encourages me to rest and do less, not more! Slowly, I'm learning to pace myself in this. There are many times in the year I would not even be well enough to get there, let alone participate at any level. But I am trying, in these warmer summer days, and I am glad of it. My blood sugars don't protest and they remain level when I keep within my own very strict limitations.

I've found that my diabetic control doesn't suffer so much with this controlled, non-aerobic exercise. But two minutes of gardening, concentrating to read, carrying shopping or even the short journey down to the class can have a far worse effect, catapulting me into ketone-high hyperglycemia territory and leaving me wrecked for days.

That sums up where I am at the moment, then: Pumping, Pilates and (very often) Pffffffffffffft! Totally zonked.
But I'm just thankful to do what little I can, whenever I can, if I can, while I can.

If you have days when you feel you can do more, why not give yourself a big hug and allow yourself to feel thankful, exhilarated and proud of what you CAN achieve in spite of this flipping illness?

But when you have days, like I do, when nothing seems to be achieved, when it's one step forward and umpteen steps back, please don't beat yourself up. Don't be hard on yourself.
IT'S NOT YOUR FAULT!
My blood sugars show none of this is in my head. None of this is down to bad attitude, faulty illness beliefs, laziness, choice or weakness.
It's not in your head either.
Find what helps you to thrive and enjoy whatever part of it you can.
Don't let the nay-sayers win by dragging you down.
We have M.E. and often other disabling illnesses too trying to poop on our dreams. But M.E. can never have us. M.E. can never define us or limit who we are. Not now and not ever!

Promises, promises...

The ME/CFS Worldwide Patient Alliance (MCWPA) has just posted this cartoon to ask:

Mr Obama - do you remember what you promised us?

Sadly, apart from the odd mutter in parliament when pressed about ME/CFS issues, the UK Coalition Government has so far not even bothered to make any such promise to look into the issue. No promise to focus funding for decades-overdue research into the devastating illness tht costs so many citizens worldwide their jobs, their health and their whole quality of life.

Please don't make empty promises.


We need you to deliver. Now.

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!

ME patients blood donor ban

"A pint, that's very nearly an armful!" as Tony Hancock lugubriously put it in his classic "The Blood Donor" sketch.

I'm off this morning to give blood. Just in connection with the usual round of tests for my Type 1 diabetes. Not as a donor, ever again, it seems by today's BBC headline. Today my blood was officially declared unfit to grace the veins of anyone but myself!

Click to read "M.E. PATIENTS FACE UK BAN ON DONATING BLOOD" 

M.E. doesn't make the news every day. When it does, the invisible community of M.E. patients often breathes a collective sigh of dread, if they are up to it. We wonder, what will the media manage to mock in the latest headline?

-Will there be a new way of getting a laugh out of "Yuppy Flu"? 
-Will there be a new raft of arguments about the research required to get to the root of M.E.'s neurological causes?
-Will XMRV (xenotropic murine leukemia virus-related virus) be thumbs up or thumbs down as the culprit this time?
-Or will we shudder with impotent grief at another wave of generalised attack aimed at real benefit bludgers, who, of course, some misinformed angry people will see as including all those hardworking, taxpaying members of society who from this devastating illness and others find themselves forced to claim invalidity benefit reluctantly, completely against their nature or aspirations?

Blogging for a few minutes on a good day or preaching for an hour a month does not, believe it or not, constitute the abilty to work full or often even part time. If only! I know, because year after year before diagnosis I drove myself back to working  again and again before another complete collapse.

It got to the point when I was so obviously ill to all my colleagues and parishoners around me, they used to beg me to leave late meetings early. I so hate letting people down that I was thrown into despair at how to do all I was obliged and delighted normally to do while my body and mind were unable to stay upright, too sick with disorientating exhaustion to sleep, caught in crippling pain, uncoordinated, feverish, spaced out, dizzy and nauseous and increasingly unable to perform all the work I so love, or indeed, any work consistently.

Today the headline leaves no doubt. M.E. is real. So real that the health authorities are banning all M.E. patients, in a crash or in remission (i.e."cured" enough to function for a period, hopefully indefinitely or permanently, in "boom" after "bust"), from giving blood. One day soon, we will know exactly what virus or gene is triggering this hellish disease and be in a position to conquer it. (Though cancer and the common cold give us less optimism to hold our breath for that in our lifetimes!). I'm an optimist, though, and I have to believe these headlines are little beacons on the way.

Meanwhile I will go on doing what I can to pace myself into another period of remission. My prayer is that when it comes, it will be forever. My determination is that on that day, I will not be sucked into the arrogance of the "cured" which harangues those still gripped by the illness to "do what I did, and look, I'm fine". 

If I had done that every time in my life when I too appeared "cured" when in remission, I would have hurt and possibly destroyed the hope and joy in many with whom I can now empathise.

Together, one day, we will dance in the sunshine and have our full lives restored to us and be more than overjoyed to graft gleefully in the valleys where we are needed.

Maybe one day, too, we will be able to give "very nearly an armful" again to save our neighbour. 

 

Five years ago

Five years ago. Sometimes it seems longer. 

I was busy being me. Minding my own business. Glass half full or more often full to overflowing.

I was dressed for work. More than work, much more my whole life than a job. One of the churches under my care was expecting me to bounce in to lead an all-singing, all-dancing all-age worship service. The sort of lively, noisy service full of laughter, joy and thankfulness that many folk think doesn't happen. The sort where newcomers grin and say as they shake my hand: "I never knew church was like this!"

Five years ago. I put my briefcase down by the bed. I'd had flu for days but was pushing through as usual to do what I was called to do. I'd had the annual flu shot, as advised to diabetics in the "at risk" category, a week before. It often made me feel shockingly ill for weeks after, but I laughed and did as wisdom dictated, had the shot anyway.

Five years ago. I tested to make sure my blood sugar wasn't low and going "hypo". It felt a bit like it. Only at the same time so much worse. My body was shutting down. The world was slipping into feverish, rubbery slo-mo. The dog caught my eye, my male tricolour sheltie, with me since the beginning of my ministry nine years earlier. My knowing little dog, who would pant and laugh until you joined him, gently mocking him, then pop his black lips back together and look at you as if you were insane. My wise, brave little dog who knew me better than I knew myself, and still adored me.

"It's alright. I'm just going to lie down for five minutes. Just for a second." I said to him. Mostly to myself,  though, because I know he knew even then he would not see me well again in his lifetime.

The next thing I knew, the steward from the church was knocking at the unlocked front door of the Manse and calling my name up the stairs. I had blacked out and never turned up to take the service.

Five years ago. That wasn't the beginning of M.E. for me. That came most probably back in 1991 when I suffered with giardia (internal worms that love your liver!) and amoebic dysentery while living and working in Bolivia. That's when the boom and bust patterns of M.E. seem to have first taken hold, triggered by the virus and infection and trauma in the immune system. I had been in South America, having the time of my life giving all I'd got and being blessed with much more in return. The first English Methodist Mission Partner to live and work in Sucre, Bolivia. I would never be the same; but it was years before I could begin to trace what had changed in my body. My spirit had so been soaring!

Five years ago. After three severe bouts of shingles in my head, followed by months of pain and illness leaving me intermittently all but disabled, the biggest collapse. The one that changed my life and had me forced to retire from the ministry I love, temporarily at least, struggling some days to function at all.

Five years ago.

Life begins at forty. At forty three I was in my prime.