Know when enough's enough!

I'm so sorry I'm not really up to blogging much on this today but I really want to share this excellent M.E. article from Margaret Williams which you can read here:

Margaret Williams's article "Professor Wessely over a Barrel?"

The article says it all, really.


Sorry I'm struggling to process info today. Last night I lost two hours of my life from my memory when I had the worst hypo I have had in 27 years of Type 1 Diabetes. Believe me, I've had many many hypos over the years, with little or no warning symptoms from the start.

I had just eaten part of a substantial amount of carbs in an Indian meal, with some poppadom, naan bread, onion bhaji and prawn korma with my mum who is with me as usual for the weekend. Normally, a meal like that would mean high blood sugars, without extra insulin. My sugar was 5.8 before tea. Perfect. I had the normal amount of Novorapid for the carbs I could count, but aware of the fat content which might alter the absorbtion rate, I was prepared to test my blood glucose shortly after tea to see if I needed to adjust anything to maintain good control. Usual stuff.

After tea, I felt exhausted. Singing a little meant I had to close my eyes to concentrate to remember the words and co-ordinate. My chest and throat soon made me stop. Usual M.E. frustrations. A little later, very unsteady and drained/pained, but putting it  down to M.E., I remember beginning to show my Mum a favourite music video on my laptop. I don't remember it ending.

I do recall the last thing I wanted to say, but couldn't quite manage without giggling (typical of me, hypo or not!) about something one of the band was wearing. I leaned against my mum several times, helpless with laughter, to say the joke in her ear. She ended up letting me lay down on the settee while she moved to a nearby chair. She left the room to go upstairs. I apparently had got up (I don't remember) meanwhile, and passed her crawling up the stairs on my way to lie on the bed. Not unusual with M.E. I'd need to rest after various little things achieved in the day anyway, and to digest even that modest meal.

Of the next two hours I have hardly any recall. This was about 8pm. I spoke to reassure my Mum apparently, but don't remember any of this. The next two hours were spent in locked agony for me. Sweating, in pain, disorientated. Everything like a weird waking dream. Things in the room unfamiliar and nightmarish.

My Mum let me rest (neither of us had any reason to suspect a hypo straight after a carb heavy meal like that which I've eaten before with rather the opposite effect of high blood sugars!) until 9pm. When she came to check on me, I was sitting awkwardly on the edge of the bed, with a nail file in my hand and my left contact lens on the end of my middle finger. How I took it out without losing it is one of the mysteries and things to be thankful for about this episode!

My Mum could get no sense out of me (no change there then, some would say!) but she could guess by then from my floppy incoherence that I must be hypo. As I was conscious, she attempted to get some nearby Jelly Babies (I always keep boxes of them close at hand wherever I am) into me. I apparently knocked the unfortunate Jelly Baby out of her hand and tried to punch her hand away.

Many diabetics will recognise this resistance to taking sugar when the brain is shutting down onto automatic pilot. Believe us, it's not a "silly" choice or stubbornness, just an inevitable side-effect of low blood sugar. We have no choice. I don't even remember. I kept lurching the contact lens at her, unable to form words, but groaning out quite aggressively. (One of the few times you'll see any fighting talk from me towards others, no doubt!) Lucky my Mum is so wise and understanding!

She scooped my legs back into bed, making me chew several of the soft, easily digested sweets that have so often rescued me. I became amenable enough though still remember nothing but my own inner nightmare vision of all this! She prized the file out of my hand (I have no idea why I needed it, at all!) and managed to get my lens safely into its case.

When she returned at ten, I was slowly coming back to reality. I had begun to make sense of the shapes in the bedroom, and the slow realisation that this was real, not a feverish dream. I pulled at my soaked hair and realised it was indeed attached to my head. But why was my Blood Glucose Tester upstairs when I had left it downstairs, surely? Why was my contact lens case on the bedside chair and why was I all but blind in one eye?

I had no idea what day it was, or what time.

When my mum came in, she explained, and helped me ascertain which lens was still in, so I could take it safely out and put my glasses on so I could see again. I tested my blood and it was still 2.0, after all the sugar, but I was coming back from the brink. I can register a blood sugar of 1.9 with no obvious symptoms at other times, contrary to all the official line on warning signs. I wonder if one day, what I once read about M.E. contributing to unexplained sudden hypoglycaemic attacks will finally make sense of all this?

I am crashed today, but my sugars are now at last down from double figures, where they soared due to much needed sugary compensation. You'll not question again why I choose not to drive!

My Mum has helped me to put back together my fragmentary, nightmarish memories of those lost two hours, and as usual, we can laugh about it now. But this one goes down in my diabetic history as a biggy. Still never bothered a paramedic, though. I hope I never will!

HbA1c you later! Diabetes and M.E. in combo

Here's the promised update on the diabetic clinic yesterday afternoon.

Nearly an hour's wait. Not too bad, then! A nurse came specifically to tell me I would be next in to see the principle diabetic and endocrinology consultant Dr M.

I was the most compliant and least disgruntled patient in the impatient waiting area. As usual. Others were getting sarcastic and restive. As usual. So why she bothered  to come to me to do any special pleading I have no idea. Perhaps she was disarmed by my wry smile of understanding I flashed at her as she beetled in and out of the blood pressure office laden with files and test results.  I wasn't even next one in, either, as it turned out.

I could see from the boards that the other two registrars, Dr V and Dr H, the female doc I'd seen the last two times, were also seeing patients. I had seen the male registrar pop his head out the door while I was in the "weeing and weighing" curtained-off area while I was being checked in, standing on the scales with my sample bottle held in one hand.

I managed to balance without my walking stick for the duration of the short session behind the curtain. I leaned on the wall in between the weighing and measuring shenanigans. Not during, or I might have appeared to have taken off several stone in weight, or, possibly, to have smuggled in stones in my pockets. It has happened in the past, I'm sure, considering the hard time diabetics are often given, whether under or over the prescribed BMI. I'm fortunate since carb counting began to be well within the limits, even erring on too thin if I don't watch it. "You haven't got a bum at all, have you?" Unquote.

Blood pressure was a bit up, but not alarmingly. White coat syndrome, or just the strain of negotiating a draining walk and bus-ride to the hospital, already using up most of my precious M.E. energy "spoons" for the day. The overhead lights in the Outpatients Clinic are like lasers beaming mercilessly down into your eyeballs. Speaking as an ME patient. I wished I'd worn my shades. The floor was already feeling like a cakewalk by the time I was finally summoned in to Dr M's office.

He acted delighted to see me. Apparently I haven't actually seen the head honcho since 2004. He remembered me fondly. And vice versa. He's a cheerful, professional doc you can trust and also have a laugh with. He remembers me pre-M.E. diagnosis in 2006, but unlike his colleague, Dr V, he knows my GP and knows from my history that I have M.E. now complicating my Type 1 so didn't ask "Why do you use a stick?" or wonder if it was diabetic neuropathy-related.


Yesterday, for once, there was no pricking-your-feet-to-make-sure-you-can-still-feel-them or inspecting the bruised and atrophied lumpy injection sites. No stripping at all, yesterday.


It was almost a full pat-on-the-head, the lass done good day, this time, to my immense relief.


Last September, last check-up, my HbA1c result (the "lie detector" actual three month snapshot of average blood glucose control) was a perfect 6.9%.


Yesterday it was an even more delightful 6.1%, a drop of .8, which had us both beaming. I'd felt that I'm probably not quite so exact now with all the carb measuring and lo-carbing as I was then, so I certainly must be getting it. 


"You certainly HAVE cracked it," smiled Doc M.

From other things he confided, I guess I'm in a minority of those who take carb counting principles seriously on board and make them work for their diabetes. It has so transformed my diabetic control, I'm quite evangelical about it still. I know others don't find it so helpful, and the take-up for the carb counting courses and D.A.F.N.E. training, by the way Dr M spoke, seems to be very low still. Sadly. I wonder how long the Diabetic Education and Resource Centre will last in the current economic cuts?


He wants to check me in another 6 months for liver function, as this can be damaged over time by the Ibuprofen I am regularly forced to take to combat nerve and muscle pain from the M.E. Not that they really help, and not that I have ever once taken any tablet more than I feel is absolutely vital.

I confessed I had even discontinued the lunchtime Metformin dose as I'm hypo so often. Taking less insulin, while keeping it enough to cover my needs, when my sugars suddenly take on a life of their own when I'm ME crashed or sick, is always a challenge.

The frequent hypos they have tried every which way to tackle, remain. The hypo warning symptoms they struggled for over a year of experimenting to give me back, are still stubbornly absent, until I fall as low as 1.9!  Most folk, as Dr M admitted, would have been comatose before they got to that figure, or rushed off to A&E under a blanket with a glucose drip in their arm.

My retinal screening improvements delighted Dr M. If it wasn't now for the M.E., I'm a model Type 1 in many ways. A success story for the department, as they are for me, after so many idiotic diabetic clinics over the 27 years since my pancreas turned up its toes. The M.E., however, can still demolish my best efforts at good diabetic control in a second. For hours. Or days. Or months at a time.

The only cloud on the horizon, albeit a predictable one, is my cholesterol. It had been perfect all the years I was taking Simvastatin. But the same drug, as for so many others, particularly M.E. patients, seemed a suspect in so many of my side effects that, on the advice of a nurse and Dr H, I tried to go without it. It's a few months now that I've not been taking my statins. No surprise, then, that my cholesterol had climbed unchecked above the acceptable 4 into the 6 range again.


Dr M empathises, and isn't sure how it'll work, but is now trying me on the lowest dose (10mg) of Atorvastatin (Lipitor). We'll see how it goes. If that doesn't work, we'll need to think again whether the cholesterol is such an issue, balanced against the M.E. side-effects. As ever, I'm totally willing to try anything. What doesn't kill you, makes you stronger, if only in depth of experience!

Blood-y marvellous!

Just read an interesting post on another excellent blog here:


niceguidelines.blog


There is a new article which claims that 4.5% of those diagnosed with M.E./CFS have developed the disease after receiving a blood transfusion.


This adds to the debate surrounding the blood ban imposed on us in the past year in the UK.
Those of us officially diagnosed with M.E. can no longer give blood. Now this new study indicates that whatever organism/virus causes or triggers M.E. symptoms, may have its origins in the blood.


This doesn't take us much further down the route to a cure or treatment, sadly. 4.5% hardly sounds like a significant proportion.


I was one of those who have had many potential "trigger" events along the way i.e. shingles (herpes zoster virus), giardiasis, as well as several years of being severely crashed after the annual flu jab recommended for me as a Type 1 diabetic. The truth is out there. Somewhere. Medical science will one day hold the answers.


A little crashed at the mo after cutting a couple of twigs in the garden. The bushes have infinitely more energy than my immuno-compromised little body. Even with all my stubborn fightback impulses that refuse to be infinitely kept under by this darned disease!


Tomorrow is diabetic clinic. The moment of truth when I discover if I'm going to be taken to task for discontinuing my statins. Will my cholesterol be raised beyond reason without them? One diabetes specialist nurse and even the last diabetes consultant I saw 6 months ago suggested I try to come off them to see whether my M.E. muscle/nerve agonies and weakness improved without the statins notorious influence. Let's see which way the old swings and roundabouts go this time. Watch this shaky space!

Running out of spoons! Welcome to the energy juggling circus!

How 's it going today, flower? You DO look well!

Had a better night last night and slept through most of it. Which was nice. And refreshing!


Woke early with the Song thrush (I nearly just wrote "thrush" but that would have been a different problem altogether!) and the sunshine. No statins again last night. Supposed to be collecting a repeat prescription for more statins (along with loads of other meds) this afternoon, but not planning on actually taking any more Simvastatin any time soon.


Head felt clearer today, compared to often. Very clear, for me, which is delightful! That could be no more than a "good" day, I suppose, but it's always a great feeling, and I survive on balanced optimism!

Aches and pains at a minimum, which isn't that often the case. Took my 15mg Enada NADH with water about half an hour before breakfast. Blood sugars a bit up this morning 13.2 mm/ol, nothing unusual, but nowhere near perfect. Somogyi Effect or Dawn Phenomenon? Whatever! That's not my concern in this study.


Took 50mg CoQ10 with brekkie. Had a small spoonful of olive oil to swig it down with. Yes - it sounds disgusting but my breakfast was only fruit so didn't contain the right accompanying fats today, and I don't have the capsules that come with Vitamin E (an oil). Something to think about if I can afford to buy another lot after this.


Decided after breakfast chores, feeding the birds, catching up with emails etc, walking slowly round the sunny garden to take a few photos for my blog, that I'd better test this energy out properly.

As ever, it's all I can do to keep on top of jobs around the house and garden, even on the better days, so my first stop was cleaning the downstairs and upstairs loos which I managed perfectly well. (Oooh! Doesn't she look WELL? Yes, dear. *rolls eyes*).

Then I decided I'd take the dustpan and brush to clean up any obvious major fluff etc ready for a proper hoover through later or, if need be, another day. I started with great enthusiasm (as always!) downstairs and then it was time for the stairs, landing and bathroom. I managed all and felt pleased as I was finishing the bathroom carpet. So far so good.

 I went downstairs. This is a good day indeed, I thought. Then I began to make a drink. For the energy-bankrupt among us, drinks don't make themselves. There's reaching for a mug, walking across to the sink, cupboard, bin, drawers, pushing plugs, filling kettle, lifting said kettle, spoon, mug, balancing, pouring, stirring, turning, negotiating worktop edges. 

Sounds crazy, I know, but no wonder we're sometimes too tired to drink or eat what we prepare. 
And that's just for one!

 If there's a mate or mates with you, that involves talking, listening, understanding, showing caring by processing what you are hearing, co-ordinating jokes or replies if you actually want to show the real you inside this awkward mess, through the crash of cups and hiss of steam as your wrists buckle and you try not to misjudge the distance to your mouth or forget your train of thought!

All this costs units of energy for each part of a task. We start with a limited number of "spoons" as one clever lass explained it to her friend (bless you, Christine Miserandino at butyoudontlooksick.com!) Go look at her wonderful explanation of what it's really like to live with illnesses where you have limited energy for seemingly trivial tasks that others take for granted, here:

The Spoon Theory by Christine Miserandino 

It's such a great explanation of diseases like Lupus, M.E., CFS, M.S., Parkinson's Disease, Huntington's Disease, Hashimoto's Thyroiditis, Fibromyalgia, Gulf War Syndrome and so many other "invisible illnesses" which mean energy can't be taken for granted any more. Out of sight "invisible" doesn't ever mean out of mind, for those who live with them (even less out OF our minds!) Well, not more crazy than we were before, anyway!

As I picked up the coffee mug, I could feel the world slowly (not very slowly!) collapsing into painful slo-mo round me. No. Not hypoglycaemic. Just M.E.'s "post-exertion malaise", that hits like a sledgehammer at any time after exercise. That's why graded exercise is often counterproductive when administered to people with ME/CFS by therapists with no imagination or real experience of such conditions. The after effects of exercise are just that. After. Not when you see us "well" (haha!) doing it. Any time from a few minutes, to a couple of hours or quite often, the next day. Even when the "exercise" seems minimal. I wasn't exactly dancing as I brushed!


My hands, knees and back felt, if it doesn't sound too ludicrous, nauseous. So did I. My ears were ringing like an express train was going through a station inside my head. My temperature began to rise (no, I don't mean a bit of a hot flush!) and I was starting to get unsteady. My vision was starting to be blurred. My head was banging and my muscles felt as if they were turning to water. Water and fire and fog. My stomach felt so raw from the weak core muscles in my torso. My throat was getting sore and dry and my neck glands tender. Painfully tender.


I lay down for a minute or two (I wish it was that short!) to recoup my energy to begin again. But for the rest of the day I've not been able to. I managed to boil a kettle for soup, but wasn't even up to cooking, let alone eating much for lunch. Certainly nothing involving a series of complex "spoon" wasting processes!

Still, taken as a glass half full, that's a big achievement for me. I always think "what if somebody visits today without giving me a day or two to prepare?" I love visitors, even if my M.E. raddled body sometimes pays after they've left, unbeknown to them. I wouldn't want to be a recluse completely,  just to save the energy it takes to love your friends and be loved by them. (That's usually a very small and self-selecting group of true friends, as anyone who hasn't been able to have the common decency to be 100% fit again within the fortnight will know only too well!)

Folks are very kind in "not noticing" a layer of dust or a stray pair of knickers down the back of the radiator, but I know. I'd sooner be prepared so I can at least keep what energy I've got to help my guest have a laugh and to enjoy each other's company, not be secretly whittling whether I've had the energy/warning to check the milk's not gone off!



Not out of the woods with the M.E., yet, then, but I'm still thinking that stopping the statins may well maximise my chances of keeping a clear head, a more normalised sleep pattern and hopefully no extra muscle pain from the CoQ10 deficiency. If so, and the statins are hindering not helping, triggering even worse troubles, how can the medical establishment justify not warning people with diagnosed diseases of the central nervous system that they should either

(a) avoid statins or

(b) take hefty CoQ10 suppplements to redress the loss?


I certainly shall be!  I'm determined to be  fighting in the future to help make others more aware of these matters so we can all make informed choices about our own body's particular needs, and support one another with humour and hope.


I hope as my body starts to get statin-free and my CoQ10 built up a bit more, my cells will be increasingly able to make a better shot at sparking their own energy, as they have in the past after periods of severe illness.

Sooner rather than later, preferably!

Sleeping Beauty. Well, sleeping, anyway!

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!