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!

Statins? Better out than in ?

Statins? Is there something we should be told?

Reading up yesterday online about CoQ10 brought up lots of people's appalling experiences of the side effects of statins, which deplete CoQ10 in the body.  As I mentioned in my last blog entry, I was put on Simvastatin not long before my total collapse with M.E. that left me housebound and bedbound for much of the time back then and still affected now most days, even five years later.



A friend emailed me after reading yesterday's blog (thanks, friend, you know who you are!) to share his own experience of the devastating effects of taking Simvastatin. From a fit and competent athlete, he went to a life of severe pain to the extent he was considering hip replacements! When my friend had stopped taking them, he was quickly free of the intense muscle pains his own doctor had failed to link to the statin therapy! His doctor still insisted the statins could save life with lowered cholesterol. But what's the point if you are too crippled by their side effects to have any quality of life? Let US decide what's right for us, given all the facts, please!

Another friend of his with Parkinson's disease (another illness that involves the central nervous system) was experiencing his own dire consequences from taking statins that left him unable to drive from pain. Merely stopping taking Simvastatin made those extra crippling symptoms disappear within days!


Another friend of mine, in her seventies now, also had to discontinue taking statins some years back because of the pain caused in her muscles and nerves. Online, the anecdotal evidence that some are made much worse by statin "therapy" is overwhelming. If you're in any doubt, just do a bit of googling on "statins"!


A couple of years ago, after going on the Type 1 Diabetes Carbohydrate Counting course that helped me reduce my high insulin intake by about a sixth and so very rapidly drop the extra few stone I'd piled on after becoming unable to exercise and walk/cycle everywhere as I'd done all my life before M.E., a diabetes nurse was looking at my meds list. She saw the statins there, recommended for all diabetics with a history of heart disease or stroke in the family (my maternal gran died at 52 from atherosclerosis, my dad had a stroke at 45 and died without recovering at 66 plus lots more related circulatory disease on both side of my genes).


Although she had no experience of M.E., she knew some of the symptoms like profound disabling fatique and muscle/nerve pain, and suggested I try coming off the statins for a week or so to see if it made any difference. I did, and maybe because I was going through a "better" period, didn't really notice a dramatic difference and so didn't pursue it further.

I went back on them so (typical me!) the doc wouldn't notice my statin prescription had been reduced without consultation, to spare her feelings! I was also euphoric over the new better diabetic control and being freed to lose the weight the M.E. had so frustratingly slapped on me. (Glad at last to be free of the misguided question: "Ooh! I thought they must've put you on steroids!" on top of everything else!).

Now I read online that one doctor with a particular interest in M.E (Dr Sarah Myhill - who got struck off at one point, I believe, for not toeing the party line of the NHS and drug companies with her insightful advice to desperate patients), says:

"My guess is that statins by reducing the cholesterol that the brain loves, are contributing to our current epidemic of Alzheimer’s Disease. Certainly it is rare for my CFS patients to tolerate statins – nearly always they are made ill by them." (c) Dr Myhill's own website @ www.drmyhill.co.uk


Then a full explanation here on the U.S. www.ncbi.nlm.nih.gov site:

"The results show that lowered levels of CoQ10 play a role in the pathophysiology of ME/CFS and that symptoms, such as fatigue, and autonomic and neurocognitive symptoms may be caused by CoQ10 depletion. Our results suggest that patients with ME/CFS would benefit from CoQ10 supplementation in order to normalize the low CoQ10 syndrome and the IO&NS disorders. The findings that lower CoQ10 is an independent predictor of chronic heart failure (CHF) and mortality due to CHF may explain previous reports that the mean age of ME/CFS patients dying from CHF is 25 years younger than the age of those dying from CHF in the general population. Since statins significantly decrease plasma CoQ10, ME/CFS should be regarded as a relative contraindication for treatment with statins without CoQ10 supplementation."


So now's the moment to try again.

Last night I stopped my statins (40mg per day), to see if they indeed are causing me more grief than I realised. I'm continuing with the CoQ10 (50mg today), which will hopefully redress the balance of the CoQ10 the statins have leeched over the years! Also, continuing with the Enada NADH (15mg) my other friend recommended from her sister's positive experience of it, which is yet another way to supplement the mitrochondrial pathways to ATP energy my body lacks.


Thanks to all friends online and off for your wisdom, kindness, patience, humour and loving support over a lifetime. One day, you'll have the real me back, game for anything, overtaking dawdlers in the street, full of beans... but maybe not statins, any more!

I could open a ruddy pharmacy, me! But maybe statins won't be wasting space there for long...