Worth a try...poorer but not necessarily better!

Quick update.




Encouraged by seeming to shake off my cold symptoms last week, I continued with the CoQ10 tablets and have discontinued taking statins for the time being. Head still somehow feels clearer in morning? Until these last couple of days, that is!


This weekend's wonderful sunny weather had me out trying out my strength in the garden, as my lovely Mum did most of the donkey work, as usual these days. I managed for a while, even mowed a bit,  but as of now (Monday) am experiencing the most severe "payback" symptoms for weeks.


Last night I slept very fitfully, with much muscle and nerve pain. I kept waking with the old sensation of lying on a burning, lumpy mat. Different muscle groups kept jerking and feeling like they were being torn out of my body into a fog of pain and heat. My eyes feel as if they've been attacked with a blow torch and my chest and stomach feel sore. Breathing in and out hurts the muscles of my chest area. My diaphragm and stomach feel sore and inflamed. My bowels are sluggish (even with plenty of healthy roughage and as much exercise as I can force myself to) today - too much information!


Today I am struggling to stay awake or find words to correspond to thoughts at the first time of asking. Nausea, pain and dizziness, combined with feverishness, very sore throat and glands, pain in head and difficulty speaking, poor co-ordination, headache, ringing in ears drove me reluctantly back to bed by 11am.

I didn't hear a friend knock or call at 11.30. Thankfully, my Mum wasn't returning to her own home after spending the weekend with me, until this afternoon, so she was able to entertain my visitor for me! I was dead to the world. Sleep was unrefreshing. I feel as if I've done ten rounds with a particularly malevolent boxer!

Have managed another hour or two upright in order not to fall too far behind with emails, blog and all the usual things that won't wait, like balancing my diabetes and preparing for the weekend when I have a long-established engagement to take the Easter Sunday service at our local church. I really need to rest up for that.


Yesterday, even my dear old neighbour saw the state I was getting in, hardly able to stand and walk, or co-ordinate and carry even light tools after a little while in the garden in the afternoon.


"Time you called it a day, Joyce!" she advised over the hedge. Even she recognises when pacing is going out of the window on a "good" day that just happens to coincide with "good" weather and "good" opportunity with Mum to lend a major helpng hand.


I feel satisfied to see a little improvelment for once in the upkeep of the garden. My body feels as if its been dragged backwards through a saw mill, been in a car crash and nothing will stay where I put it! No, I've gardened enthusiastically all my life; this isn't just the usual familiar aches and pains from used muscles.


The new CoQ10 from "Simply Supplements" finally arrived on Friday (they may put it in the first post available, but none of us can rely on a speedy service from the dear old Royal Mail these days!). I have upped my daily dose to 200mg (2 of the larger black coloured capsules - see rather unclear photo above!).


I'll make sure I keep taking them at least on days when I desperately need the extra energy boost they should be giving. But on current experience, there are limits to how much they can override my M.E.-riddled body's compromised state. The more I recover into a "boom" remission period in the future, maybe their effect will appear more noticeable! Till then, I go on in hope, poorer and maybe a tad wiser, pacing myself and crashing when I have no option at all but to crash.

But nothing will ever stop me fighting to be well again one day, and like even those who have died from the disease's severest forms, I will never stop believing  and heading towards the day when we will all flourish in the healthy sunshine where we were created to dance!

In memory of Lynn Gilderdale

Today's blogpost is in memory of Lynn Gilderdale, tragically stricken down with M.E. at a young age and trapped by it in one of its severest forms until the age of 31, and for her loving mum Kay who tells us their story. It's also for everyone who knows someone, or is someone with M.E.

If you have ever said to someone with M.E. or CFS or another of the many invisible illnesses people struggle with every day,

"But you don't look sick/ill...." or "It's just mind over matter. I get tired too...."

because you thought they should be able to "snap out of it" by "positive thinking" or because you felt helpless at them "still" being ill when it became uncomfortable for you to deal with, and if you would have been shocked and offended by them not replying:

"Thank you. Glad you think so," or maybe "Well, I'm all the better for seeing you!" (as I very often say!), but rather:


"No, I don't look sick. You don't look stupid either..."


then maybe you'd better not read or listen to the links below. Or perhaps, all the more, you really should.

Please don't read further if you'd prefer to think of M.E./CFS as some joke or cushy "lifestyle choice". Or this will shock you and possibly upset you. It should. There are some difficult issues here, whatever you believe or don't believe about the sanctity of life and freedoms of choice. But some of us can't just look the other way on this one. Because we know at first hand some of the whirlwind of havoc M.E. can wreak in a vibrant, positive life.

Maybe you will find the wisdom, grace and compassion to try and understand more too. Maybe it will change the day of someone you know with this thankless monster of a disease. Maybe it will save somebody's life. Thank you.


Kay talks about her daughter Lynn Gilderdale's tragic struggle with M.E. (Kay's article in today's copy of the Daily Mail)

Kay interviewed on BBC Radio 4's Woman's Hour today

CoQ10-ergy! Still hoping!

Well, it's been over a week now that I've been trying the CoQ10 and stopped the statins. Time for another quick catch-up!

The pitch has been queered a bit this week as I developed a cold which forced up my blood sugars and left me achey and feverish.

However, the cold has dried up very quickly (by my own horribly low standards of recovery speed!). My throat is  quite sore, still, which is either from the cold, or maybe the typical M.E.-type of razor-bladey throat.

My Mum was over at the weekend as usual to help with domestic stuff. The weather was so beautiful last weekend here in northern England. Warm temperatures up in the 60s, sunshine getting everyone out in the gardens. Mum,  bless her, gave my back lawn its first taste of the lawnmower this season, while I pottered, sitting down on a chair most of the time, to do a spot of pruning. 

I managed well enough, with frequent rests and naps to keep me going, but considering I had a virus this week too, I'm really pleased to have achieved as much as we did.

I've had plenty of "payback" from that activity since then, in the first three days of this week. (The sun's taken its hat back off and the temperature has plummeted!) But on the whole, since stopping the statins and taking the CoQ10, my head has felt "clearer" and I've been able to wake earlier and felt more alert, I think. 

My current dose is about 100mg CoQ10 a day, taken in the morning. This means taking 10 capsules of 10mg, from a bottle of just 100! As you can guess, this is rapidly diminishing the stock of pills. But I have some more on order, the cheapest I could find online from a company doing a BOGOF (buy one get one free) deal. The new tabs will be a higher dose of 100mg each, and I'm getting 30 capsules with 30 extra free for £14.99 from a company called "Simply Supplements" at 

www.simplysupplements.net

I did some comparison of the prices per mg of more than a dozen brands and this was the cheapest I found online. However, after clicking send, I realised I hadn't compared the unit price of the Holland and Barrett original purchase from a branch in town. This actually proved the cheapest (about 10p per mg compared to 24p per mg). One online pharmacy was actually charging 99p per mg, while most seemed to be about the 50p mark. This is frankly unaffordable longterm, but if I am convinced of their good effects, as I said before, I can just keep them in reserve for days of particular energy need.

The original Enada Nadh has quickly run out, and as it has a very similar function to the related coenzyme, I am persisting with the readily available  CoQ10 alone. Mainly because it is well documented in the M.E. community and also among the statin takers of the world, of whose number I'm a member on both counts!

I've slept quite well, most nights, and the main difference is a clearer (if not totally clear!) head. I still struggle for words and co-ordination when I'm getting tired etc, but onward and upward! I don't think I'm as itchy as I was prior to stopping the Simvastatin. A patch on my left shoulder blade has calmed down a little.

Sadly, the online delivery from Simply Supplements was promised for the following day if ordered before 6.  I ordered on Sunday evening and even allowing for the weekend etc, it's now Wednesday! Still, I'm not quite out of the original stock yet, so if they come soon, I'll be able to go seamlessly onto the 100mg capsules by the end of the week, in the build up to Easter with its extra energy challenges!

As ever, watch this space!

So pharmacy, so good

 Went to collect my repeat prescription stuff this morning and got collared for the usual annual review with the pharmacist to make sure your meds are still right for you and that you understand what they're all  for. This is a good plan, I think. Helps to give people a chance to ask any questions without taking time at GP, and maybe catches any mistakes or abuses.

Once in the little office (bang next to the queue waiting for the till who can hear every word of the review through the door!) the pharmacist went through my diabetic stuff item by item and on to my Ramipril: "Yes, that's right, for high blood pressure."

Finally it was the turn of the Simvastatin. A well-timed opportunity to ask for a professional opinion. I explained that a diabetes nurse had suggested I try coming off the statins a couple of years ago to see if there was any improvement in symptoms. I also asked if she could check exactly when I was first put onto them. Can't trust my own foggy memory of it being not long before massive M.E. flare-up!

Trouble is, I've come back home without finding out. So much concentration to explain and listen and sit and stand and juggle the heavy doors etc etc that it completely slipped my mind. I know she'd started to look on the computer as I asked! Also, the doc has filled the order for needles instead of Ibuprofen painkillers. Both these items are on the second sheet of my repeat prescription. Did I tick the wrong item in my brainfoggy state? Probably!

The upshot was that the pharmacist agreed that it might do no harm at all to stop taking the statins for a while, and if I find an improvement in symptoms, then I can update my GP and go from there. 

All good. What surprised me a bit was that the pharmacist had never heard that statins could deplete the body's CoQ10. It seems widely documented online. It's even used as a selling point for CoQ10 outside the context of M.E./CFS, for those on statins! But she was still in the dark!

Given that, I was less surprised that she hadn't heard that many patients with M.E./CFS were also deficient in CoQ10.

But then, nothing surprises me about general lack of awareness of M.E. both in the medical world and the wider public and media!

Sneezing and shivering today which is just a cold, no doubt, not M.E. related at all. Slamming headache and achey now either with the virus or the after-effects of this morning's energy-heavy local outing. I felt less brainfogged before that, I think, and only woke twice or three times through the night (once at 2am with a hypo, when I stumbled out to get the restorative jelly babies from the bedside drawer and ended up tipping them all over the carpet. Still finding them this afternoon! Lol!)

Time will tell, but I'm still more than up for it!

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.