Pumping, Pilates and Pffffffffffffffffffffffffffffffft!

I am SO sorry for the long gap in bloggery since mid April. Some days earlier in the year, it was all I could do to read and retain the last few words in my brain-fogged brain, let alone write!

Thank you so much for sticking with me and continuing to follow.

I'm more touched and grateful than I can say for your interest and patience here.

As many of you know all too well, M.E. is a fluctuating illness.
One day, coping. Next day, crashed.
One day, doing to the point of overdo. Next day, unable to raise your head from the pillow.

Combined, in my case, with Type 1 diabetes, I find my blood sugar often acts as a thermometer of how M.E. is bamboozling my body. The past months have helped me put this in focus in several ways. Struggling, but learning every day, for which I'm profoundly thankful (when I'm not gritting my teeth and screaming hoarsely at the sheer frustration of functioning at less-than-optimal level so much of the time!)

My cardiac arrhythmia, uncovered at the end of last year, after several particularly severe hypoglycemic episodes, is now being tackled with a 2.5 mg daily dose of Bisoprolol. That doesn't mean it's been cured or fully controlled. I can go for longer symptom free at the moment, at least. Then other days, my heart is glugging and giggling through my ribs for no obvious reason. I'm learning to live with it, but don't enjoy the sensation! The cardiologist seemed quite open to the idea that this might be related to M.E./POTS/OI, but the GP seems now to be denying the ectopic beats the cardio clearly picked up and mentioned (but didn't write in my records, apparently!)

After 28 years of Type 1, my diabetes consultant asked if I had ever considered an insulin pump. Considered it? No way could I ever afford it, without the NHS. Only a tiny percentage of UK Type 1s are pumpers. Fewer than in the USA or mainland Europe. Having tried everything to achieve good control, my glucose levels still plummet to dangerous low levels or soar to ludicrous highs with no apparent provocation. Although I'd always been less than enamoured by the idea of being attached to a pump 24/7, I finally jumped at the chance to try it. I haven't regretted it for a second in this first two months of pumping. Nothing ventured, nothing gained, in my book.

Humphrey Pump-hrey - the new "man" in my life!

The insulin pump has helped me to see exactly how things affect my sugar levels. The pump releases minute personalised amounts of basal insulin (as little as .1 unit divided into 20 doses every three minutes over an hour day and night) and exact bolus amounts to suit carbohydrate intake through the day. As I'm learning to tweak these amounts to suit my lifestyle, I've very quickly seen the truth. My control can be near perfect and exact, until I do something overtaxingly aerobic, or requiring lots of brainwork, or physical effort. Then, up to 12 hours or a day or so later, my blood glucose will rise as much as 9-10 mm/ol in a matter of a couple of hours. It can go from mid-range of normal (6) to dangerously hypoglycemic (16) with no carbohydrate consumed or other factors present. Equally it will sometimes stay impossibly low (1.9-2.8) without provocation and unresponsive to dextrose, sugar or jelly babies galore. M.E. raising it's ugly head.

...and introducing Rita the Glucometer Maid. Acts as insulin pump hand set, via bluetooth and  as an inveterate nag when glucose low or high!

Because of being able to keep an even closer eye on insulin effect, carbohydrate effects and glucose profiles, I can appreciate the real effect of exercise. My daily results show clearly the way physical and mental effort and subsequent exhaustion is expressed by my immune system etc pushing up my sugar levels (instead of dropping them, as exercise should in a normal body). Although this can be erratic, I hope bit by bit to be able to learn to tackle these effects in order to maintain better control than ever. Perhaps along the way, I can help professional health workers to understand more of the realities of M.E. and its effects on other conditions like Type 1 Diabetes. After all, Type 1 is another autoimmune disease, and autoimmune diseases often flock together like birds of a feather.

No - can't manage much but simple balancing & stretching yet!

More recently, quite by accident, I heard about a very local, very gentle over-50s Pilates group led by a lass who has had an M.E.-like illness herself, and is currently in remission. I went to the first session purely to give moral support to my cousin who wanted to give it a whirl. Because the instructress is so aware of my limitations (and those of others in the class with conditions ranging from  fibromyalgia, multiple chemical sensitivity, IBS, and arthritis to rheumatism) I have been able to continue with the classes on my better days.

 Sometimes I try to push on beyond my limits. I push MYSELF that is. She doesn't push me! I pay for it, of course. The instructor gently reminds me that pushing myself is not the right thing to do. She often steps in subtly and discreetly to make things more achievable when she notices me, or anyone, struggling. She always encourages me to rest and do less, not more! Slowly, I'm learning to pace myself in this. There are many times in the year I would not even be well enough to get there, let alone participate at any level. But I am trying, in these warmer summer days, and I am glad of it. My blood sugars don't protest and they remain level when I keep within my own very strict limitations.

I've found that my diabetic control doesn't suffer so much with this controlled, non-aerobic exercise. But two minutes of gardening, concentrating to read, carrying shopping or even the short journey down to the class can have a far worse effect, catapulting me into ketone-high hyperglycemia territory and leaving me wrecked for days.

That sums up where I am at the moment, then: Pumping, Pilates and (very often) Pffffffffffffft! Totally zonked.
But I'm just thankful to do what little I can, whenever I can, if I can, while I can.

If you have days when you feel you can do more, why not give yourself a big hug and allow yourself to feel thankful, exhilarated and proud of what you CAN achieve in spite of this flipping illness?

But when you have days, like I do, when nothing seems to be achieved, when it's one step forward and umpteen steps back, please don't beat yourself up. Don't be hard on yourself.
IT'S NOT YOUR FAULT!
My blood sugars show none of this is in my head. None of this is down to bad attitude, faulty illness beliefs, laziness, choice or weakness.
It's not in your head either.
Find what helps you to thrive and enjoy whatever part of it you can.
Don't let the nay-sayers win by dragging you down.
We have M.E. and often other disabling illnesses too trying to poop on our dreams. But M.E. can never have us. M.E. can never define us or limit who we are. Not now and not ever!

Every picture hides a story

Got energy in spades...but what about an hour or two later?

I posted this photo as a joke on Twitter and Facebook today. I'd simply taken it to show my Mum the new dirt-cheap shovel I'd just had delivered from Amazon.

When she comes to help me with little garden tasks like cleaning up under the wild bird feeders, gathering leaves, a spot of snow clearing from the path to the door, a shovel is something my household toolkit has lacked for many years.

I've a dustpan. Too flimsy and small. 

I've a spade, too heavy and flat.

So, I decided to buy this cheap shovel to make life easier. Not for me, usually, but certainly for those generous, kind and fit enough to lend a hand when they can. I need a small step ladder for the same reason. Not because I could climb it, as I am at the moment. But folks who come to help with little household jobs from time to time aren't all as tall as I am!


The joke was that I was imagining this image of me brandishing the shovel is what an intruder might reasonably be expected to be confronted with in the middle of the night, with this lethal looking weapon on site!


My natural affability tells everyone who knows me this would be the furthest thing from the truth. I captioned the photo:

"They'd be shaking in their shoes. Not!"


But the punchline, from an M.E. point of view, is even further from the obvious message this image conveys on the surface.


The shovel isn't very heavy. But within an hour or two, after just lifting for this shot, my wrists and chest are on fire, the following day, from the effort of posing for it. That's the part nobody sees when we're gripped by myalgic encephalomyelitis.


We all tend to wear our outside face for the world. For me, that's the genuinely jokey, positive, laugh-a-minute, glass-half-full face. That's one reason even friends sometimes forget what that positive energy expenditure actually costs me. That's what you never see; what you don't see happens once the shutter has clicked closed and the camera is laid aside because your wrists are too weak to lift a fork or your balance too shaky to stand or sit without nausea.


Every picture tells a story.

Every picture hides a story too.

Like the iceberg we say we've "seen" when we only glimpse the tip above the frozen ocean.

The camera doesn't lie; but it can't always show the whole truth.

It's a snapshot in time; but M.E. is a fluctuating illness, within a year, a month, an hour, moment to moment.


I still want to make you smile, like I always did when I was well enough to bounce.

But please be careful you don't judge the book by its cover, when a friend with M.E. puts their best foot forward for you. Or I might need that shovel after all! Now that IS a joke, honest! :D

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!

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.

M.E. treatments I've tried; or "Buyer beware"?

While people with M.E. look forward to a breakthrough in medical research and treatment, with standard non-treatments offered by many doctors and the "M.E. Clinics," usually no more than CBT and GET, we are often forced to take our treatments into our own hands.

Most of us have learnt to "pace" ourselves, when we can do so, to maximise our energy and minimise pain and other symptoms. Normal painkillers, like Ibuprofen and Paracetamol are limited in their effect, in my personal experience. Nothing touches those nerve pains, like having toothache in your neck, chest, wrists, back etc. Many touted "M.E. treatments" out there are often  disconcertingly varied in their (reported!) success rates or prohibitive in their costs.

When I was first ill, I learned to deal with the pains all over my body and feverishness and swollen glands all through the night by lying (as best I could) on a stick - yes, just a normal polished wooden walker's pole. Mad? It worked for half an hour at a time sometimes, as the pain of feeling its hard lumpiness under me helped me to filter out the more diffused all-over pain I could not put my finger on or soothe in any way. Then I would wake up, back where I started, but at least I'd had a few minutes of sleep!



Over the years, I have tried Melatonin. I asked my doc about it, as I knew from researching it, that in the UK, at least, she was not allowed to prescribe it. She said as much, so I quietly sent for some online and took it for as long a period as I could still afford it. I had some sleep. Whether from the Melatonin, or sheer exhaustion or going through a better period, impossible to tell.




I drank pints of Berocca over the years too. Expensive but readily available fruit flavoured drink designed to restore "You, but on a good day" as the popular advertising campaign proclaims. I did have good days. But bad ones still arrived. As with many treatments aimed at those with no better options, my purse became emptier as my health continued to fluctuate.




My sense of humour and positive spirit ( not to mention what we Christians call "prayer" and "Giving thanks in every circumstance"), got me just as good results, for free, as did time, and whether or not there was an "R" in the month or a "Y" in the day!


Last year, in a better period for me, I sent away for a special powder called ME-Relief, designed by a man, Paul Carpenter, who believed he had skills in such matters, as well as being an M.E. sufferer himself. He had devised the powder based on what he knew of the body's chemistry and the science behind the illness and immune system, such as it stands. That, and his sheer desperation to be well again.

Again with hope and an open mind, I took the powder as prescribed through many days until the trial starter pack, at its reduced introductory cost, ran out. I still had bad days and weeks when I could manage very little and symptoms were disabling. My good periods were good when they were good, and bad, as ever, when they were bad. Please understand I am not saying that anything does or does not work, and if you believe it safe, then everyone has to decide for themself what may do them good. I object, however, to giving undue credit to substances for my regular oases of slight improvement. I have those same oases and crashes without any outside intervention or cost! The powder certainly didn't make my symptoms any worse or better in the end, but I bless him for his initiative. His website's support and information is a lifeline in itself to those struggling to understand and live with M.E.




The "Lightning Process", a hot potato of frighteningly emotional proportions in the M.E. community, is known to have transformed the lives of some and left others poorer and unhelped, longterm. I haven't tried it, so can't give my opinion either way. Others in the media are very quick to sing its praises in "curing" them, only to relapse (as I have done for at least the past 20 years, as well as going into remission without apparent intervention) before re-emerging for the next interview a few years later as miraculaously "cured" once again. It's always "once and for all" at the time, of course. Pyramid selling techniques in some "cures" mean those who find it helpful become evangelical practitioners of whichever course helped them, or, if an uncured "failure", they are quietly brushed under the carpet and not mentioned in statistics for fear of being "negative".We must draw our own conclusions, and will do so.


The Perrin Technique is another treatment involving among other things a method of massage to drain lymph nodes and provide stimulation and relief which I have tried. It feels good, when you can bear to be touched, but, for me, had no lasting measurable benefit, though I still get my Mum to press the suggested Perrin points when I'm ready to scream with discomfort and pain!



All along, I have read how NADH-Q (NADH-coenzyme Q oxidoreductase, Coenzyme Q10), a protein that occurs in the human mitochondrial genome DNA is involved in helping with energy matters in the cells. It helps to generate energy in the form of ATP (adenosine triphosphate) as it does naturally in a healthy body. Googling will explain any of this I'm not expressing clearly enough!



Considering the nature of M.E., the seeming inability for your inner battery to recharge, and all the attendant knock-on effects of this, taking this as a supplement seems to make sense to a sufferer.


So here I am. Ready to try something else. A friend whose sister has M.E, told me recently that her sister swears by taking ENADA (NADH) tablets  which have given her more energy. Yes, she still has M.E. which affects her life on her bad days, but she believes in the power of these pills to transform for the better.



This week I sent for 30 5mg tablets from Amazon (cheapest deal I could find this week, at least, at £11.90 the box). 


Reading medical opinions online, it seems that 10-20 mg is the safe and recommended dosage. At the higher end of this to be effective in touching the complex demands of a body compromised by M.E.
I've taken 10mg as an introductory dosage before lunch. I know I can't afford it regularly, but will save enough to target days when I have particular challenges, like weekends when I have promised to take a service for an hour through to the summer months. Even with a working wage, I don't see how I could do it longterm, but once back well enough to work, might only need it for extra draining challenges?


Summer is often less virus-riddled than winter (often but not predictably, as with most things M.E.-related!), so the tablets have the best chance of helping, perhaps, at this time of year. The clocks have been put forward. The spring equinox is past. The lighter nights are here!


So watch this space without judgment or fear.
Bring it on!

The Straw That Breaks?

Decided to have a quick shower.


I'd put it off this morning as balance dodgy.


Kept making up mind to climb those stairs.


Kept having to lie back down to gather strength.


Finally made it into shower.


Now too crashed to type for long. Or make much sense.

Can't raise my hands or get warm. Chest feels like its swollen with pain and tender with the effort of breathing in and out. Legs and arms belong to some other sucker.


So not much today.


One thought adapted from a comment I heard the other day. It sums up my experience of M.E. and is no doubt true of so many other so-called "invisible illnesses":

Stay with me for a day. Choose a good one, and you'll leave thinking I seem ok.

Stay with me for a week. You'll begin to glimpse how far from "well" looking "well" for a few hours really is!

But my thoughts, like yours, I guess, are all with Japan. No matter how sick or spent and weary they are, for thousands there's nowhere to lie down, or shower, or rest under their own roof. There are no words to cover that. No easy answers. Only mourning and lamenting with them, doing what we can to support them in the rebuilding, and praying with them for strength for today and hope for tomorrow. 

 "A bruised reed he will not break, and a smoking wick he won't snuff out, until he has brought justice through to victory." Matthew 12:20 in the NIV


or as the Message version puts it so compassionately:


"  He won't walk over anyone's feelings,
         won't push you into a corner.
   Before you know it, his justice will triumph;"