Me and M.E. tonight

A snapshot.

But M.E. is too long for a day.

Decades are like a lifetime.

But this won't be me forever.

Because it can't become who I still am inside...

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!

XMRV video on YouTube

You ban us from giving blood in the UK.
Yet you still mutter it's all in our heads?

*facepalms (very) gently*

Worth a watch if you want to understand why.

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...

Q10 joins the party!

Too ill to venture into town today. That would have been two bumpy bus rides too many. Not to mention all the mixed blocks of effort in between. Yesterday was worth it, though. I just can't do stuff back-to-back at the moment.


The kind person who went into town to run a couple of errands for me, brought back another related supplement from Holland and Barrett. The very helpful staff in our Rotherham branch explained that they didn't stock Enada NADH Coenzyme B3. It might be snappier to call it Niacin, for those who remember "O" level science classes? They aren't exactly the same, but very closely related in function within the human body, as I understand it. Enada was only available from their larger branch in Sheffield. But they do stock the other Coenzyme supplement Q10 so familiar to M.E./CFS patients, if only through online discussions, so I am adding this into my trial.

Q10 has been recommended for replacing the deficit in the body's naturally occuring Q10 in those taking statins. I have taken Simvastatin, a common cholesterol-busting statin prescribed in the UK, since just before my major M.E. relapse/crash in the autumn of 2005. Guilty of hastening my collapse? Or was it that flu jab again? Your guess is as good as mine.

Statins are known to inhibit and deplete vital Q10 in the body. Many M.E. patients have also been found to have a measurable Q10 deficiency. Some research has indicated that this Q10 deficiency may be causing some of our symptoms, such as profound and disabling fatigue, plus a raft of autonomic and neurocognitive symptoms. Q10 deficiency may also explain why for some severely affected M.E. patients the condition can eventually lead to heart failure at a younger than expected age.


I had heard about the link between Q10 deficiency and M.E./CFS even before I heard about NADH-Q Coenzyme of B3. Both function in a similar way within the body. Q10 is a kind of nutrient which helps to metabolise ATP in the mitochondrial cells, also acting as an antioxidant, mopping up dangerous "free radicals". So both the Enada and the Q10 are complemantary coenzymes that give a boost of energy where the body is unable, because of mitochondrial damage from diseases such as M.E., to do this without outside intervention. This is similar to the way I must inject artificially produced insulin to compensate for the hormone insulin that the "islets of Langerhans" inside my own pancreas have refused to produce naturally since at least 1984!

Since Coenzyme Q10 has found its way into mainstream pharmacies, it has been touted as the "miracle nutrient" and the "miracle antioxident". From its healing properties it has also been heralded as a treatment in Alzheimer's Disease, heart disease, cancer, immune diseases like HIV, AIDS-related complex and Hepatitis B. It is also believed to help the body fight such neurodegenerative diseases as Parkinson's Disease, Huntingdon's Disease and Friedreich's Ataxia. Gum disease, wrinkles and the whole ageing process have also come into the sphere of its influence since its discovery!

If this is all not entirely due to clever marketing techniques, it has to be worth at least a try, alongside the "pacing" through which I survive day to day! I don't consider myself especially gullible, but I'm open to what can't harm me, and might just prove useful in inching my way back to some semblance of health and fuller functioning!


The recommended dose of Coenzyme Q10 varies between 100-400mg for people with M.E., and overdose is simply impossible at such levels. Considering the tub I have just acquired at 'Holland and Barrett' cost £10.29 for 100 10mg capsules, overdose would be out of my price range, too! Ten days at just 100mg a day would see the kiddie-proof bottle empty!

The Enada NADH is best taken in the morning on an empty stomach with water, perhaps half an hour before a meal. The Q10, on the other hand, prefers to be washed down through the day, accompanied by something...erm...oily. That's a meal containing Omega-3 fatty acid type foods that are staples for me anyway. For example, fish like mackerel or failing that, a spoonful of olive oil. One of the easiest ways of getting the combined oil fix, is to take it with Vitamin E, which acts on the metabolism in the same way as an oil.


Sadly, as some of these medicines and supplements take at least a couple of weeks to have noticeable effect, my plan to stockpile such resources for days when I have extra energy needs, or greater M.E. challenges from within, may prove less than effective. I can only try.


The itching, burning and crawling all over my skin at present is apparently a known side effect of taking NADH Coenzyme B3, I now discover. I can't blame my own symptoms on it for certain, of course, as my diabetes and multiple chemical and food sensitivities from the M.E. can have exactly the same effect. At the moment I'm ready to scratch my skin right off, even though there's no visible rash. A rash that I had all over my body two years ago was never fully solved beyond a vague diagnosis of "psoriasis" by the dermatological specialist. In the end, they thought the M.E. might have caused it indirectly as my immune and neurological system struggled.


I was reading earlier about one woman with CFS who had been taking 10mg of Enada, which seemed to help her fatique for a while, but it also caused gastrointestinal problems. My own stomach feels as if it has been hollowed out from the inside, though I usually put this down to M.E. muscle discomfort and weakness. I don't know for certain either way, but am soldiering on as usual.

As soon as the woman had to discontinue the Enada NADH because of these well-reported stomach side-effects, she found she had the worst CFS crash she had suffered for ages, leaving her worse off than before. She was advised to continue with a smaller dose, say 2.5mg. I couldn't break these 5mg babies in half in any case!

I have decided that I will keep taking 10mg until the Enada runs out in the first instance, continuing after that with the Coenzyme Q10 to see how it goes for me.


Off for a proper lie down now, till my muscles settle down and stop playing pat-a-cake when I'm not intending to move them! My eyes feel as if someone has been at them with a blowtorch. They need to put that blowtorch away and give me a break!

Enada NADH Progress Report Day 4

Another update.
Yesterday I took 10mg of the Enada and today took another 15mg before breakfast.
Fasting blood sugars within the normal range but a couple of minor hypos both days, between mealtimes.


M.E. symptoms particularly trying this weekend, which could still be a knock on effect from last weekend's major challenge leading worship on the Sunday morning. Maybe I'm not taking a large enough dose of the Enada to hammer the deficit?

Nights have been disturbed, waking up several times every couple of hours with the sensation of lying on a "burning mat" as if lower back region on fire, actually generating heat I could feel from outside too. Getting "benign fasciculations" (muscle twitching and fluttering) in calves, soles of feet, toes, chest, arms, fingers, palms, lower back, eye region. These are observable from the outside. Core muscles in stomach area sore (feeling inflamed) and tender to touch, exhausting to sit up. Tender lymph nodes in neck and under arms, tiring sometimes even to lift arms for any length of time.


Last evening (Saturday) my whole skin felt it was crawling and itching, and I felt feverish with flu-like symptoms. Skin hot to the touch. Eyes reacting to ordinary light by the evening. Hyperacusis (sounds appearing too loud to me, or startlingly loud intermittently). Kneecaps feel "rubbery" and unstable.


Was determined to go to church, when I might normally have rested because of severity of M.E. this weekend. It was Mother's Day, for one thing, and wanted to give Mum a good day. Plus a dear friend of ours had texted on Saturday to say if we were going to be at church today, she would take a bus through from her home in town to share the special service with us.


Just walking round the corner to church (a five to ten minutes paced stroll on a beautiful sunny spring morning) was almost a challenge too far. Having been unable to keep warm "inside" for the past few days (this often happens since M.E. - my inner body temperature control is all up the spout, a common M.E. symptom) the friend asked several times during the service whether I was ok (visibly shaking and struggling to stand for the hymns probably gave a clue!) She was amazed how cold my face and hands were to the touch. I wasn't! Lol!

Co-ordinating to stand, smile, sing and focus on the words on the screen by the last hymn was a challenge, to say the least. The floor was turning to "rubber" (haha - so inconsiderate!).


By the time I went in for coffee after the service, my brain was fried. I had difficulty remembering some of the words I wanted to say to carry on various conversations with friends. Not so unusual for we middle aged, you may say! Wish it really was so simple. M.E. brainfog is recognisably different from the inside, believe me! Things were going into slow motion and going blurry round the edges by now. That and carrrying a plate and cup across the room and selecting a table to sit on with friends, was all I could manage, with a little help!


After this minor period of 'rest', decided that taking Mum for a Mothering Sunday pub lunch would save the energy I'd have had to expend preparing, cooking, serving (serving often uses up more units of energy than the cooking), washing and drying the pots etc. Sitting in a quiet familiar local pub, semi-dark and quiet before the later rush (the pub in question was actually slightly closer to get to on foot than walking home straight away), I got a bit more time to sit and recoup my dwindling energy and pain resources.


It was good to see Mum enjoying her Roasted Vegetable Jalfrezi, Vanilla Ice Cream and Cappuccino with complementary biscuit (not all on same plate!) and I knew I could rest up later. Real life, including things like special occasions, doesn't take account of the need for "pacing", of course.


Once home again today, I've not been really up to much else, and have had to sleep, on and off, for most of the day since then. I am now very hot and flesh crawling again, ears sore and overreactive to sounds, muscles in hands feel inflamed and are twitching, weak as I type, but again, I want to make sure I do this update before it becomes a bigger job to remember what has happened by tomorrow!


Tomorrow I may try to up the Enada dosage to 20mg, as I believe a slightly larger rather than the minimum dose is more beneficial for M.E., according to the experience of other sufferers I've read about in the past. I'm already a third of the way through the 30 tablets that cost me more than a tenner!

Till then, I'm hoping for some wholesome sleep tonight.




Night night, sleep tight,
Mind the bugs don't bite (or those itchy, invisible creepy crawlies I can feel flickering over various muscle groups! Lol!)

Enada NADH Progress Report Day 2

Well, quick update on the Enada NADH received yesterday.

The tablets are small and very easy indeed to swallow. Mind you, I'm known for being able to swallow the most revolting and/or huge pills without breaking my stride! Diabetes "metformin" tablets are my least favourites and can even make me shudder and wince!


Took two 5 mg Enada tablets (i.e. 10mg) when I got the package from Amazon through the post just before lunch yesterday.
Nothing dramatic through the day, which isn't surprising. Most courses of medicines will need a period of time before they "kick in".


Today, took another 10mg dose before breakfast which consisted of fruit, rasberries to be exact, plus a slice of toast. That's about half a carb of raspberries (about 35g) plus 2 carbs of toast. My morning ratio for my fast acting insulin (Novorapid) is currently 1 +1/2 times each unit of carb, so I took 4 units of Novorapid, plus my usual 6 units of basal insulin (Levemir), which is half my daily dose which I take split in half at 9am and 9pm to help it last through the entire 24 hours.

Hadn't slept well last night, and so woke with "rubbery" limbs, slight headache, cold hands, spells of dizziness as I move about. Nothing unusual, really, and a relatively "good" day, as I am now up and about. 

My BG before lunch was 3.9. Hypo to some, but quite normal for me before a meal. My BG after fasting this morning was 7.4, bang on normal. I get a lot of the "Dawn Phenomenon" coupled with many episodes of the opposite "Somogyi Effect", so I'm always pleased to see a normal reading first thing! I'm sometimes in double figures then, due to the above mentioned ie high after a night hypo ("Somogyi Effect") or high because of the body's adrenal and hormonal responses to the "fight or flight" of early morning ("Dawn Phenomenon"). So far, so good.


Through this morning I've been borderline hypo twice, at about 10.30am and 11.30am. I get very few hypo warnings these days, apart from a kind of "glowing fog cloud" in my field of vision when my blood sugar drops to 1.9-2.2 ish. Yes, alarming to some, normal for me throughout the 27 years I've been diabetic! 


On those occasions I took 3 jelly babies (fast acting sugar, 10g) and a plain rich tea biscuit (not so fast acting 10g) to bring me back into normal range. Before lunch (soup and a slice of bread with a chunk of cheese) I was 4.5. I took 1 tablet more (5g) of the Enada (15mg in all today) to make sure I'm neither under or overdosing myself. The recommendation on the packet says best to take it in the morning, which makes sense as more energy expended during day than at night.


So far: borderline hypo most of the morning, which can happen anyway at times. Any more hypos and I'll have to start wondering if the Enada is a cure for Type 1 diabetes instead! I do wonder if I'll find that with the extra energy the Enada may be encouraging my body to store, I may need less or more insulin (less would seem the case, if any, from this morning, but of course, this is far too early to make any judgments or changes). There's the wise "Three day rule" in insulin therapy, that adjustments should only be made on the evidence of several days, rather than switching amounts around willy nilly.

Activity levels this morning were things like catching up with email and checking in with friends online, cleaning the downstairs loo, making a Mother's Day card for the weekend (already partially made), feeding the birds, pulling the wheelie bin back in (my kind neighbour drags it from the kerbside to my back gate for me), doing a load of washing. Rested in between each of these to some extent. At this moment (early afternoon) I have the vaguest headache still, tingling in my hands, ringing in my ears from time to time and still sore glands/throat. Have to bear in mind that I led my one service per month at the weekend, which usually takes every last ounce of energy and co-ordination I have and can take a very long time to recover from, even on the best of weeks.


I feel no worse or better than normal. My mind was racing in the night, as often happens with illnesses like M.E. that involve disturbed sleep patterns, so I won't read anything into that. I just take a bit of time for quiet prayer and a little gentle jazz till I drift off again! Or just lie quietly and let the world softly turn! I'm just reporting this for the record, if it might help anyone else on their personal journey.


Stick with me.
I'll report back again soon on this one.