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!

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.