What a Difference a Day Makes!

You know the old song "What a Diff'rence a Day Makes!" ? Well, with M.E., it certainly does, doesn't it?

My last post was talking about my new Insulin Pump and trying a little very gentle Pilates? Well, this is my day to go down to the local Nature Therapy Gardens for a gentle Pilates session. The one with the VERY gentle understanding instructor who has recovered from an M.E.-like illness? Since I started this last month I've managed to keep going each week, accompanied by my cousin. Not long, I know. Little goals, little successes (lots of recovery and mini-crashes, too, tbh!) Today I've had to text her to confess I'm just too poorly to walk down there, let alone do the session to any level at all.

What a difference a day makes. Today it was all I could do to get out of bed and dress myself, I was in so much pain, so weak and wobbly, glands swollen, head banging. Today I can hardly balance sitting down, let alone spreadeagled on an exercise mat! Not quite ready for a consistent performance in the Paralympics, yet, then!

My blood sugar was ticking along in the normal range with my pump doing its stuff most of the time this week. But like I said, it can't yet replace your pancreas completely! Or work miracles! Much as I'm fond of my little Humphrey Pump-hrey and his amazing 24/7 basal rates!

I was making a meal of blueberries, cottage cheese and pineapple last evening. Being one of those people who likes to do a bit of spontaneous juggling in the kitchen, I'd decided on the ingredients to hand, and the carbohydrates involved. I'd done the diabetic maths. Then half way through the process, having set my pump off to give me a multi-wave bolus gradually over 30 minutes, I suddenly decided to warm the blueberries up and add some gelatine I had in the back of the cupboard to make them into jelly.

No immediate problem, but I then realised I needed to cool them and wait a while before marrying them to the pineapple cottage cheese. So, inevitably, while concentrating on each part of this process, resting in between, getting brain-fog and having to check and redo things etc, I ended up very slightly hypo (low blood sugar) by the time I settled down to eat. That was soon corrected, but then comes the inevitable spike afterwards as my body later freaks out that "an error has occurred." My liver squirts out an inappropriate amount of glycogen to compensate (in spite of the fact I'd already dealt with that blip earlier).

As I'm already on a bad few days with M.E. symptoms, alternately feverish and shivering (had to snap myself out of putting the heating on yesterday - it's still August, for goodness' sake!), I'm now struggling to get my sugars back into range. Several correction boluses later, and now on an elevated TBR (temporary basal rate), I'm still in double figures. I'm starting to recognise this pattern after any inadvertent overdo!

It won't last. I'll be back to "normal" as soon as I possibly can. But the fact remains that in the uncertain world of autoimmune diseases like M.E. and Type 1 Diabetes, nothing can be taken for granted. There are no quick fixes or perfectly balanced equations. No matter what textbooks, quacks or know-it-alls will tell you! Anecdotal is just that. We're all our own quirky anecdotes! Nothing's guaranteed, just a lot of patient trial and error and learning your own limits and challenges, helps and solutions (oh - and some screaming and throwing things, if preferred!)

Today will mostly be a rest day. I have friends coming from a long distance to have lunch with me tomorrow, which I want to try and be at my best for, naturally, so we can all enjoy. Lunch will be out, no cooking or juggling. I need a clear head for a meeting at the weekend too.

Hope if you're reading this, you're being good to yourself. Not expecting too much or too little of yourself. Not beating yourself up about things you have no control over. Not thinking that frustrations today won't be useful learning experiences, or even a cause of laughs tomorrow! Not letting things lost keep you from looking forward to tomorrow, no matter how uncertain it seems through this end of the telescope!

What a difference a day makes! Shares can go up as well as down!

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!

Ignorance isn't bliss - it's toxic!

Here we go again.

Sorry this blogpost may not be very thorough, spellchecked or rational.

Just seen this in today's online Daily Express in Dr Rosemary Leonard's column "Getting to the Heart of Medical Matters":

Q After a flu vaccination my 45-year-old son began suffering muscle weakness, fatigue and lethargy. Numerous blood tests and visits to his GP followed and he was told he was suffering symptoms of ME but no help was offered.

Can you guess the content and suggestions?
Of course you can. No peeking.

1) the flu vaccine it is unlikely the jab is to blame as it does not contain any live viruses.
2) cognitive behaviour therapy (CBT), counselling and physiotherapy can be helpful along with painkillers for muscle pains and also antidepressants which can help boost mood.
3) One of the most beneficial treatments is graded exercise where the patient has a specific programme to slowly increase the amount of activity they do each day.
4) Reducing stress
5) a healthy diet
6) reducing alcohol

I'm not denying there will be nuggets of help there in among the old misguided anti-fatigue measures. But the lumping all diagnosed M.E./CFS cases under the same hallucinatory umbrella is getting us nowhere nearer to awareness of the severity of the disease in many cases. Nowhere nearer to a diagnostic test. Nowhere nearer to effective treatment. Nowhere nearer to a cure for any of the neuroimmune illnesses that fall under the influence of NICE's idea of M.E./CFS.

My own M.E. (yes, that's anecdotal, I know, I know!) symptoms, even before diagnosis and while still able, intermittently, to work, were ALWAYS worse after the annual flu jab (as a T1 Diabetic in the "at risk" group) and I always got a panoply of bad (non-flu?) viral infections both before and after the jab. It was the week following my jab in 2005 that I collapsed and became bedridden and housebound for the best part of a year and from which though improved, I have never fully recovered.

My GP sent me for 2) CBT and 3) GET. At an NHS "CFS/ME Clinic". So patient "fully compliant".

Even the OT admitted by the end of 6 months or so, that it wasn't helping me to be cured or really improved. Why? Because it was clear to her from the off that I wasn't depressed. Wasn't "frightened of doing too much". Wasn't "deconditioned". Didn't harbour those "false illness beliefs" so beloved by those who think the root causes of M.E. include psychological difficulties.

I couldn't even make the excruciating journey to the last GET feedback session because it was making me more ill. The OT could see I was motivated to return to work and my happy, successful, joyous fully functioning previous life. I had to be all but forced to take early retirement, for goodness sake. On what planet is that a "lifestyle choice"???

I had low dose amitriptyline (antidepressant) to help with relaxing painful muscles alongside painkillers like aspirin, ibuprofen and paracetamol. They did nothing for me but make staying awake even harder, weight gain, fuzzy headedness, etc even worse. So in the end they were discontinued. After all, my mood had never been low.

My mood had never been low, that is, until rationally I worked out the state of play with M.E.  No, I, like so many others, did not choose this diagnosis and knew nobody with it until much later on! Then, seeing my career, my freedom, my credibility as a fully-functioning citizen, my very truthfulness questioned by society as a whole, my mood did dip at times, understandably, till I understood I wasn't alone with this variable but very characteristic set of suffering symptoms (of which "fatigue" is quite low down the list, thank you!!!)

I had been eating healthily for many years, most of my adult life, as an insulin-dependent diabetic. That's a "tick" for number 5.

Number 6? Well, after collapsing with M.E, one glass of wine had me so dizzy, sick and disoriented, my central nervous system obviously knew what it didn't tolerate any more without me voluntarily reducing intake. I could tolerate the occasional glass of wine, or lager, even once or twice a spirit like brandy or vodka at Christmas before M.E. raised its much maligned head. So 6) reducing alcohol is hardly an issue to aid recovery for some of us either.

4) Reduce stress? Don't make me laugh (I've actually been known throughout my life, and every illness and circumstance as having the best positive attitude and a wacky warm GSOH)

 
Tell 4) to doctors, nurses, specialists, consultants, the DWP, ATOS, utility companies, landlords, and every last well meaning delusional who will thrust this article in my face to "help me cope".

I'm coping as I always have and always will. Was my diabetes down to "illness beliefs"? Was my shingles down to "illness beliefs"? Was my recently discovered tachycardia, ectopic beats & cardiac arrhythmia due to my "illness beliefs"? Was my bout of giardia in Bolivia, which may or may not have triggered my immune system's meltdown, my "illness belief"? Is the space in the teeth of my lower jaw (where I now know my great grandfather had an extra tooth) down to my defective "illness beliefs"? So what's the likelihood I've suddenly developed something that has no possible physical cause?

I'm coping. Pacing. Enduring. Hoping. Thankful. Optimistic.

But when are you going to actually treat my cardiovascular, immune, autonomic, cognitive disease? When are you actually going to prove you're listening to 250,000 people in this country and so many more worldwide? When will children and young people with M.E. stop dying from something you say  has no Proper Robust Reason?

When will you cure me, or just fess up, shrug at me with a look of condescending pity and hand over the cyanide pill? (N.B. Jokey sarcasm alert - you can go on dismissing my M.E., but you will NEVER change who I am inside!) :)

Emotional lability: watering our personal happiness flowers!

Sorry I've not been up to much blogging much yet this month!

Easter came and went in a semi-horizontal haze of pain. Brain fog swamped me, nausea, sweats and shivers, aching legs, sore chest, ringing ears, emotional hours when all I could do was sob over the fate of the Titanic 100 years ago! I'm not often down, but last week, everything I read, combined with how hopelessly ill I was feeling, seemed to drag me under.

Nothing made sense. Nothing seemed nourishingly joyful. Niggles on message boards and comments on statuses seemed negative and nitpicking. I found my normally buoyant mood deflated each time I came to the laptop. Sometimes I was too sick even to read, much less respond.

 I'm known as a peacemaker and natural mediator. Suddenly I felt like I was in danger of drowning in other people's conflicts, as if I couldn't keep one foot on the bank to help pull them back from the flood without ending up sliding under the current of grief and rage myself.

 So much negativity! People fighting over and over the same few inches of ground we've been stuck on for decades with the sickening politics of M.E. People misunderstanding other people's motives when both were surely on the same side. I guess most of us feel those suffocating, helpless, tail-spinny feelings every so often.

With M.E. we put so much of our hope these days in "breakthroughs" and "research". Yet all the evidence seems to spell out that when breakthroughs come, as they do, when research shows the disease is physical, the powers that be simply won't let it get us anywhere. Heads appear over the parapet of M.E. research and awareness, only to be shot down again. Petitions and campaigns are built on people's honest, hard-won "spoons" only to be rejected by the government. They CAN hear. They DO hear. They just don't want to change. It doesn't pay. It doesn't suit.

Sometimes, even within the very supportive M.E. community spread across many social networks, groups and gatherings, we see different strong-minded, opinionated characters tearing one another apart online, forgetting we're all fighting the same, or similar battles. We don't have the time left, some of us, for the luxury of in-fighting. It fritters away what little strength we have. It wastes our focus and energy. We have precious little energy even at our best. We CAN do it together. But we are on a hiding to nothing if we pull ourselves apart!

Conflict, for me personally, leeches and sucks away everything that keeps me going. When I was so sick this last week or so, I just had to peel my eyes away or be submerged in despair. If I despair, I'm no use to any of my friends online and elsewhere who depend on me to stay positive, compassionate and empathetic so we can all move forward together and maybe make a difference for those who like us, are caught up in this illness, willy-nilly. (That's like the hokey-cokey but with the fun taken out!)

I'm usually known for being resilient and hopeful. Last week these gifts almost deserted me, as the overwhelming "emotional lability" of M.E. (as in other neurological conditions) pinned me mercilessly to the mat and drained my personal inner Pollyanna of her lifeblood.

So I drew back for a little, or my struggling sick body drew me away from it all for a while to try and recover my usual sunny equilibrium.

Sometimes we all need to make sure we're watering the roots of our own happiness flower! Doing what puts the smile back in our hearts when we're feeling down or crushed and ridden by our emotions. Maybe chopping down the weeds a bit. Maybe cutting down on spending time staying with situations that are drains not fountains for our spirit. Not focusing energy on people who bring us down. Not wading daily through dialogues that have no intention of going anywhere joyful, or thankful or gracious and humorous but rather seem to prefer to dwell on blame and shame. Life and spoons are too short. Mine certainly are, as I learnt again in this latest M.E. crash.

I'm still not up to much blogging.
Sense may still cease to be made at times!
I may still blubber unashamedly over the Titanic.
I may still feel steamrollered by people's personal battleplans.
But I can still laugh and let the love flood in.
I can still count my blessings.
We all can.

First, here's a brand new video I saw today that's  really worth a watch and a share: complied by friend and fellow sufferer Giles Meehan : This is M.E. (Myalgic Encephalomyelitis) - 34 people with M.E. tell it like it is!

Plus ten personal things that make me glad I'm alive that have made me smile these last few weeks:

1. A friend's little boy making himself (and us!) laugh with his made-up (no, not obvious at all!) knock-knock jokes and spotting a Great Spotted Woodpecker through my telescope before any of us adults (Knock -knock! Who's there? Interrupted Sheep. Interrupted Sh... Baaaaaaaaaaaaaaaaaaah!)

2. A bunch of tulips and daffodils given to me by a visiting friend that turned into a smorgasbord of extra textures and colours when some of the expected golden trumpets turned out to be cream and lemon swirls of jonquil and narcissus too!

3. A Song Thrush visiting my patio day after day, eyeing up nearby bushes as a venue for his  nest ready to bless us with sprinkles of echoed melodies and speckled young

4. The weather cocking a snook at the weatherman who swore it would be rain, on a day when only sweet sunshine and flossy cathedrals of white cloud were on the agenda in reality

5. An electric heat mat given by a friend some years ago now, glowing its comforting warmth into the agonising crook of my back and aching gluteals as I lay in bed, unable to bear the light through the bedroom windows

6. The lovely Easter messages and greetings, emails, posts and tweets from friends to brighten and bless my days, even though my plans to go to some Easter services went awry this year through illness and exhaustion. God is good! He mystifies me daily with his grace to me!

7. Yorkshire Water sending me a cheque in compensation for low water pressure last month, and the dread as I opened my winter quarter gas and electric bills evaporating into hilarity when I found both were so much smaller than I'd estimated!

8. The Wren, that we hardly ever see, but daily hear singing with a loud trill that punches way above his tiny body weight, hopping just inches away from me through the glass of the back door.

9. Discovering quite by chance on a free podcast download, "The Occupant of the Room" by Algernon Blackwood, a short story I heard on Radio 4 when I was in my 20s, which I've been trying to trace for 30 years, not being able to recall author or title. Spinechilling!

10. My diabetologist, after 30 years of unannounced hypos, Dawn Phenomenon, Somogyi's Effect and all the needles, whistles and bells of Type 1 Diabetes, finally saying those immortal, rare words: "Would you like to try an insulin pump?" when only around 3% of insulin dependent diabetics have one in the UK.

I'll stop there, cos I did say ten things, not dozens! Cos my wrists ache like crazy by now.

Oh yes. I have such a lot to be grateful for. Nothing is going to rob me of my joy.

Please make quite sure that nothing and nobody sidles by to rob you of yours, either!

Why not give your GP something worthwhile to watch?

Just got back from GP.

Had my little list with me of things I needed to ask/say. Saves the usual pantomime of playing "Twenty Questions" when I forget every other word and name! Even medicines I've been taking for a decade! Didn't entirely work. Still managed to do a bit of "Errrrrrrm...." where she had to do an impromptu prompt. Mostly correct!

First on my list: feedback on my follow-up at cardio a fortnight ago. The cardio said the various heart tests showed I had tachycardia, heart going like a steam hammer, with extra beats. Which would explain the glugs and giggles I can regularly feel there. He didn't say exactly what was causing it. But that combination sounded like A-Fib or A-flutter of some type. He put me on a low dose (2.5mg daily) of beta blocker bisoprolol. "See me in 6 months".

Trouble is, GP hadn't had a letter to confirm this.  So she was whistling in the dark. She doesn't think it'll be A-Fib, as that's irregular beats on irregular beats. (I could just see her picturing the med school diagrams in her head!). It would be ectopic beats, she said. I reminded her it was tachycardia, too, and mentioned how common P.O.T.S. (Post Orthostatic Tachycardia Syndrome) and OI (Orthostatic Intolerance) is in M.E. She actually took this suggestion on board, and seemed to think it might be a possibility. Not a diagnosis, of course. That would be asking too much, wouldn't it? Can't force them to do Tilt Table tests, can we?

By the time my month-long initial bisoprolol prescription runs out, she says, she should have the letter from cardio, and it will then be on my repeat script. We hope! Maybe I can make another appointment then to find out what's what. She mentioned what the cardio didn't, that beta blockers also tend to block diabetic hypo early warning signs like speeding heartrate. I'd read that online, but reminded her that one of my biggy problems is that I get no such helpful safe warning till my blood glucose suddenly plummets to 1.9. Shutting the stable door after the diabetic pony has bolted, as it were. So that shouldn't be any additional problem to someone who has to test as often as I do already! "To be continued," then!

Second on my list was painkillers. Mentioned that friends with M.E. had been taking Pregabalin (Lyrica) or its cheaper, sluttier sister Gabapentin. Asked also about commonly M.E.-prescribed Tramadol - but as I react very badly with sickening side-effects to anything opoid-like, this wasn't an option. She duly started me on Gabapentin. Slow build-up. 100mg tab today and tomorrow. Up to 200mg in two doses on Thursday and Friday. Then up to 300mg in 3 doses by the weekend. She did say some people take as many as 9 a day. Hope it won't come to that!

Very glad my surgery now has a fabulous, efficient chemist within the waiting room. No trailing into the shopping precinct to the Co-op Chemist. They never used to have half the stuff, even the meds you regularly ordered! So that used to mean two, even three return trips for meds you were "owed". Today, from this in-house chemist, I came home with Gabapentin in hand!

I glossed over item three on my list. The Jobcentre Plus adviser had handed me an application form for DLA (Disability Living Allowance) and told me to get help from my GP and from the M.E. Association. I hate claiming anything. I know so many friends with all sorts of life-crushing disabilities much more easily recognised than M.E. who have been turned down at the first hurdle, dropped to the lowest rates, or lost it after qualifying for years as the new Welfare Reform Act does its evil ATOS-infested devastation in lives already wrecked by illness.

 I muttered that I hate claiming anything if I can possibly manage. She already accepts that, having known me when I was still able to work, before my most recent relapse meant I was finally diagnosed and then forced to take reluctant early retirement from the ministry. GP says she would support my application by filling in her bit. But I still probably won't. Does she realise fully, even now, how badly I am affected when not inside her office for ten minutes every so often? Soon DLA will become the dreaded and much-criticised PIP (Personal Independence Payment) for which, it seems, only the semi-comatose, along with the odd corpse will qualify.

Last but not least on my list was the DVD of "Voices from the Shadows", the devastating documentary about paediatric M.E. and the ways in which the medical profession is currently failing people with neurological M.E. I simply passed one of my spare copies over to the doc, with a quick word about what it was and why she might find it interesting. She seemed intrigued and grateful. I can't be sure she will watch it, but I'm really hopeful she will. I'll be able to have a gentle check when I see her again. Maybe it's something more of us could try? Ingredients needed: DVD; GP with potential open mind. Stir. Leave to rise and mature! (Other bona fide M.E. information is available!)

I know, with me as her patient, and others over the years, she has come at least a little way towards greater understanding of M.E. She had a long way to go, let's be honest! In 2005-6, the only option she had, under NICE guidelines, was to bundle me off, as soon as I wasn't permanently bedridden and housebound, to the local CFS/ME "fatigue" clinic in the nearest town for a spot of CBT and GET after 6 months of tests to eliminate all other possibilities.

Today reminded me my own GP's not there yet! Still a way to go. She still chuckled rather dismissively when I mentioned some people had seen improvement with LDN (Low Dose Naltrexone):

"Oh yes! That's not licensed!" she laughed, "But I suppose people will try anything when they're desperate!"

We ARE those people. We ARE desperate. We need help and support and we need it NOW! We need biomedical research NOW! I pray that if she watches "Voices from the Shadows" and just once hears the haunting, heartbreaking sound of Sophia Mirza reasoning and pleading with police and psychologists who have broken down her door in the dead of the night, my GP will be changed forever. Maybe then she'll pass it on to other colleagues. Maybe they too will be changed. Maybe, just maybe, the long road towards the target of awareness of M.E. for all the medical profession and society will be lit up by one or more new lights. One day nearer to care and cure.

Another Voice from the Shadows; Another Candle in the Darkness

 

So proud of my lovely mum yesterday.

I've been too sick to go anywhere but the sofa since last week. That was when I managed to take one of the occasional church services I do voluntarily around the circuit where I was a Methodist minister till my latest major M.E. relapse. Had a wonderful hour, leading worship, kids' time & holy communion with around 100 in the congregation. The stewards and folks who help with PowerPoint, etc were so helpful, bless em all. They carried me in little unseen ways that helped me achieve playing my part as I was called to do long ago. As you can guess, I'd had to rest up and prepare for weeks prior to this. I haven't been up to functioning much since then till the next big energy "ask".

So I didn't get to my local church yesterday, but my mum did. She was staying the weekend to help me with shopping, tidying and even "strip washing" as I wait for my landlords and their contractors to get their act together to mend my boiler so I have hot water again after almost a month! I joke that unlike my last boiler fail, when the landlords/boiler contractors left me without heat for six weeks, this time I'm dreaming of having a shower before Easter! Wheeeeee!

After the service, a lady took my mum aside to tell her how she had read about a young lass in the paper who had been "cured" of chronic fatigue. My mum gave her the full lowdown on the realities of neurological myalgic encephalomyelitis. She explained how CFS has, since 1988, become the floppy expandable umbrella diagnosis for all diseases that entail some degree of fatigue. Mum explained in a straightforward way how many of these "cures" and "treatments" appear to work because they are actually applied to fatigue possibly caused by simpler things with a psychological root, or post viral states that self-correct over time. She really told it like it is. Told it plainly, but with all her usual courtesy and wisdom. She explained about my raising money for biomedical research through ""Invest in M.E." and the "Let's Do it for M.E." campaign. She challenged some of this lady's misconceptions. She even mentioned the heartbreaking video about severe M.E. "Voices from the Shadows" and even had this lady interested in seeing it. Minor result!

Drip by drip. Inch by inch. Hope against hope. We keep chipping away at neurological M.E. awareness and education. I've now bought an extra copy of Voices from the Shadows to give to my GP & practice nurse, who are open to learning, but tied by the system that bows to the anti-wisdom of CBT & GET alone. I may start carrying a spare copy in my handbag whenever I'm well enough to show my face outside, in case someone more influential comes across my path who may be able to spread the light into more dark and ignorant corners!

Today I was so sad to read via a link on the Sheffield M.E. Sufferers/Support for M.E. Group on Facebook about Lois Owen, yet another person to die from M.E.

Lois's tragic but ultimately inspiring story is told  in This is Derbyshire: Tragic tale of woman with chronic fatigue syndrome 'too tired' to eat Tragic because of the attitude of the medical profession to patients with an illness they seem incapable of handling, and unwilling to keep abreast of the most basic up-to-date knowledge of the needs of patients whose every bodily system is affected and wrecked by M.E. Inspiring, because of Lois herself and her compassionate creativity made available to others, and the way her whole attitude gives the lie to outmoded ideas of M.E. as "tiredness" or "malingering."

Lois died of M.E. aged 34, after a life filled with positivity,  talent, enterprise and creativity. She was a university graduate who set up a charity called "Therapeutic Arts" offering free classes in drama, poetry, painting, music and sculpture. She even wrote a book, one of several she was planning, in a time of remission to help others who suffer chronic illness to make the most of what strength they have, as she did. What a legacy left by a young woman whose life was ended, though never defined by M.E., bringing help and hope to others! Her loving family made sure the book was published to reach others who live with M.E. and other chronic illnesses. Her book "Bed Without Boundaries" is available from the 25% M.E. Support Group here.

Her immediate cause of death was a chest infection which her body could no longer fight off after Lois lost a great deal of weight from being too exhausted to eat. Many of us know that feeling only too well. Using all your strength to cook a simple meal, then having no energy left to eat it! All the more so when bedridden, too poorly to rise and do any such tasks. Or that pernicious exhausting toxic nausea that makes eating and appetite such a struggle. Overwhelmingly frustrating and painful to read how at her inquest, her problems seem to have been linked to anorexia.

Lois had, like other PWME such as Sophia Mirza, been statemented as mentally ill in the past. Yet every symptom she had, and the non-treatment by medical professionals who claim they felt "powerless," I and so many others can relate to entirely. The problem is compounded by the fact that since 1988 many illnesses which exhibit "fatigue" as a symptom have been lumped together as "chronic fatigue", whether or not they are also more specifically characterised by the neurological, autoimmune, cardiovascular, autonomic symptoms that are essential to the ICC definition of M.E., the multi-systemic toxic cocktail of disability that has floored us. As I commented in the Sheffield support group today:

"I can also say that almost all Lois's symptoms ring a bell with me. Often, even now, the feeling of debilitating nauseating exhaustion that accompanies my neurological symptoms makes eating a real challenge. If I can prepare something, many times that uses all my strength & there's little or none left for eating. At no stage have I had anorexia but at times I am too weak to eat. At one stage of my illness I put on weight through having to give up long walks and cycling everywhere as I had done previously. At another stage I lost 6 stone and could eat very little. None of this was down to any problem attitudes to food, but the effects of M.E. nausea & weakness in combination with type 1 diabetes where insulin has to balance with carb intake even on worst M.E. days! As for "voices" - when I was in an M.E. crash with glands so swollen & throat so sore I could barely swallow, plus feverish pain all over, neurological hypersensitivities etc I sometimes felt I was almost hallucinating and even listening to music, familiar vocal/instrumental tracks would seem to play slightly out of time with each other. After months of disturbed sleep & pain with no answers, even as an extremely positive person, I woke one morning seriously considering banging my head on the wall to try to block the pain, or throwing myself out of the window. I didn't. But only because I could not imagine even more distress and discomfort, & hadn't the co-ordination or strength to mount the sill."

Mental stress comes only as a result of the neurological damage and AFTER the illness has left our previously vigorous, joyful, busy, adventurous and forward-focused lives and dreams all but shattered.

I ask you: if Lois's doctors felt so "powerless" to treat her with the sensitivity and expertise necessary, why on earth did they not themselves, as caring GPs and "specialists" join the fight to press for biomedical research? Why did they not dig deep to ensure this would never happen to another of their patients in the future? If they refuse to change their mindsets, how long before someone in the same position as Lois's family, or Sophia's, or Lynn Gilderdale's, calls for a charge of "corporate manslaughter" against a medical, political hierarchy that stubbornly refuses to press for biomedical research and instead mutters "all in the mind" for their own vested interests and monetary ends?

But it's Lois's attitude of hope that's inspiring me today, to go on trying to be a cog in the wheel of  progress in M.E. research and awareness, not a stumbling block on the way. We can all do together, bit by bit, what we could never achieve alone. Sometimes even when we can do nothing at all, we find others, like my mum, are doing their bit too, on our behalf, to enlighten those who are still singing from a different hymn sheet!

Valerian Root - sweet dreams & cool for cats?

When I was younger, I used to sleep so well.
In fact, I could drift off to sleep and wake up quite refreshed at whatever time I'd decided I needed to rise. I've never liked to lie-in. I love the early mornings and hearing the dawn chorus was nothing but joy to start my day.

Then came M.E.

Painful, endless nights, like lying on a burning mat, limbs shivering, muscles twitching no matter which way I lie. Hot. Cold. Stiff. Nauseous. Sometimes I can get to sleep, but the sleep is fitful, and I jerk back into consciousness every hour or so. By morning, I'm so exhausted I drop off for longer than I like to, and suddenly it's late (mid-morning is late to me!).

I try to maintain a good sleeping pattern so my body clock isn't thrown, but my body has a mind of its own. When I've overdone things, or pick up a virus, like at the start of my latest big M.E. meltdown, I can sleep the clock round and never feel refreshed or even half human in the waking hours.

I've tried lots of things over the years. I asked my GP about MELATONIN some years back, but she wasn't allowed by her own professional guidelines to prescribe it. If she had, the cost would have been covered by my medical exemption certificate for Type 1 diabetes and similar lifetime conditions. I bought some online from a reputable chemist. Quite expensive to keep that up and I didn't see any huge improvement, though for a while seemed to help with actually getting off to sleep. It's what our bodies produce naturally when we are well and functioning normally. No side effects. Widely used to counteract jetlag etc.

Likewise, in the early days of diagnosis I was prescribed low dose AMITRIPTYLINE to help painkillers to work more effectively and aid relaxation and sleep. But these had many unwanted side effects like weight gain and tachycardia and were eventually stopped. They didn't really do anything for sleep, in any case. Not sleep that felt healthy.

I was never just "stressed", in any case, apart from feeling despair at not being able to function reliably. Plus the emotional struggle any human has with coming to terms with a disability that's an invisible illness, to boot. One that gives the world and their grandma a license to tell you how you could miraculously cure yourself if only you take the quack advice they heard from their next door neighbour but one! (Cures which invariably turn out to be for CFS, or because the patient went into remission which may or may not prove permanent!)

I've tried HEAT PADS, HOT WATER BOTTLES, RELAXATION TECHNIQUES, WHITE NOISE, NATURE SOUNDS, SEA SOUNDS, TREE SOUNDS, LAVENDER, HOPS (the plant, not the exercise!), TENS MACHINES, PERRIN TECHNIQUE, DIET MODIFICATION (more than all usual modification for diabetic health), TAI CHI (when able to balance for the less demanding moves!), COUNTING SHEEP. You name it. Most of these are comforting and relaxing. My favourite of them is LAVENDER, on balance. Heavenly scent, like summer fields and open spaces. A few drops on your pillow or combined with a heat pad can sometimes be just what you need to feel good. Sweet sleep may well follow. Though sometimes it doesn't, for long!

But till some lovely spoonie friends mentioned it on Twitter recently, I had never tried
VALERIAN ROOT (Valeriana officinalis).

I discovered I could buy 90 tablets of VALERIAN (3 bottles of 30 vegetarian 500mg tablets) from Amazon.co.uk marketplace for £2.50 + £2.03 shipping. They arrived two days later.

Only down side- they pong rather like a cross between Tom cat wee and something slightly unsettling you can't quite place! They are sometimes likened to catnip for sending cats wild! The smell is quite unmistakable from the moment you break the seal on the pill bottle. Apparently Valerian teabags and liquid forms have a similar effect. So I lock the doors before taking the lid off now. Don't want to be pulled up by the RSPCA for driving the neighbourhood kitties insane with desire!

I have taken 1,2 and some days 3 per night, staggered through the evening (this is the recommended dose on the label). On the days I have taken them I certainly feel drowsier (nauseous, exhausted drowsy) before bed. That can happen with M.E. too, so a bit tricky to quantify. I have got off to sleep quite quickly too, which is a good thing. I still wake occasionally through night but get back to sleep. Again, certainly not worse than before, though would have to try it when sleep problems are at their worst.

I have certainly slept longer. Last night, with some interruptions, almost 10 hours (10.30pm - 9am) which is excellent. The trouble is still, with M.E., I don't feel much refreshed by that good long sleep. Though an outing on Saturday had all but wiped me out. Still pain, nausea, brain fog (terribly much yesterday in particular), unsteadiness and very little appetite at the moment.

As usual, we'll see how it goes. So far, so good. Apart from the stomach-churning pong! At least your cats will love you!
.................................................................................................................................

Update Tuesday 24th Jan 2012: Took 2 tabs last night around 11pm. Slept with a few minor interrruptions until 11.30am. At which point mum texting to make sure I was ok and not hypo. Managed to struggle down by just after noon. BG 12.0 (high, but not that unusual if I ever sleep late). Headache, muscles weak & "rubbery", heart pounding on and off, chest sore and fibro tender in shoulders, wrists, knees. But on that evidence, the Valerian seems to be working as a natural sleep-promoter! Zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz

Brainfoggy aimless unscripted rambling - marginally easier than typing?

Brainfoggy aimless unscripted rambling, for a change. Maybe marginally easier than thinking, composing, typing, editing, re-editing a written blogpost. But a whole lot more embarrassing and cringeworthy?

Nobody would guess public speaking was a big part of my profession in teaching, ministry, meetings etc!

Gives a glimpse into how, even on a relatively "good" (???) day, brain fog can make it a challenge to scramble your way from one word/thought to another. The subject matter was hardly complex! I can still spot the odd word in there I didn't intend, e.g. International Space CENTRE instead of "STATION"! But what the heck! M.E. whittles things down to what's important. Who gives a flying ferret about it, anyway, apart from perfectionist "don't say anything wrong" me? Nobody! Get over it! Haha - thank crikey I've never pretended to be an oil painting! Lol!

Still, it's saved my finger joints, wrists etc. a bit of pain. Saved my body, if not my blushes!

PS It's taken all day to upload this, in the end, as Blogger v McAfee seem to have refused to play ball together. Not sure if sound/picture will come out co-ordinated either - they did on my laptop! Perhaps that's a mercy!

M.E.'s darkest moments: I am worn out from groaning!

Llewellyn King: ME/CFS: Into 2012 without Cure or Care

The link above is a wonderful article exposing the reality of M.E.
I confess I wept on reading the quote from the lady who, speaking about her worst moments with M.E. when bedridden and housebound completely, wrote in an email to Mr King:

"I am not sure I can hang on another year, when every day is so hard to get through. Just a few weeks ago, a doctor laughed at me and said there was no such thing as [my disease], and my husband just sat there, not once backing me. That was more hurt than I can carry for another year. I pray every night, 'Now I lay me down to sleep and please, Lord, take me before I wake.' ”

I reckon we have all been to that precipice point when housebound and bedridden. I recall turning my face to the wall, as best as I could, when I could hardly roll over in bed, one time when my M.E. was at its very worst and sobbing "My life is OVER!" Even with deep faith and conviction that God is in charge, exhaustion brings agonising wilderness moments when we feel nothing but alone. Just like the Psalms constantly cry out from the darkest corners of agony, it's 100% natural as children of faith, we grieve for the full potential we see sucked out of us by devastating weakening illness. Even if, in our heart of hearts we're convinced our lives are valuable whatever our disability, our emotions often tell a bleaker tale.

Could we claim to be fully human if  such moments were alien to our experience? We shouldn't feel ashamed of our tears and rage, or count it as weakness. We just need to support one another through the darkest hours. If we have a faith, we need to embrace the truth that sometimes we need resources outside our own limited striving, to lift us gently up from the pit of despair and to hold us cradled when the last spoon of strength we have is utterly spent, till the worst storms pass and even though so sick we can look from a new perspective.


"Be merciful to me,Lord, for I am faint; O Lord, heal me, for my bones are in agony
My soul is in anguish. How long, O LORD, how long?
I am worn out from groaning; all night long I flood my bed with weeping and drench my couch with tears. 
My eyes grow weak with sorrow" (Psalm 6 verses 2, 3, 6 & 7)

I wish I'd a pound for every time since M.E. struck me down that these words express what I sometimes feel. We know we're not alone feeling these emotions. They've been part of being alive since God was a lad!

What a travesty and disgrace it seems that such heartfelt pleas as Mr King's are still so needed after all this time as a New Year rallying call. Haven't we been campaigning and raising awareness long enough for the world, the medical establishment, the governments, the public, the researchers to take for granted the urgent need for progress right now to cure and care?


But we know different and I'm so grateful for Mr King's articulate call to action. We need to whisper it, croak it, shout it, demonstrate it till truth and justice and healing dawn at last. Personally, I believe God's big enough, loving enough and patient enough to carry us till that day. Even if you are convinced that God is just wish-fulfilment fairytale bunkum, there's still a reason to hang on in there for your own sake and the sake of spoonie friends everywhere, to help make the world sit up and take notice of what's right and what's worth fighting for.


As Llewellyn King writes so well:


"A cure this year is unlikely, but better understanding can start today. Now...Maybe in 2012 the voiceless victims of ME/CFS will be heard, even faintly."

"Spooney!" said the clerk...what the Dickens? M.E. Brain Fog strikes again!

Some days I can't concentrate to read. You've probably found the same problem? I think it's a very common experience for people with M.E.

One day on Twitter, I couldn't work out, after looking at it several times, whether what I was seeing was my own Twitter name or somebody else's with very similar letters. With M.E.-related cognitive dysfunction and brain fog, inputted info sometimes gets mangled on the way in - and out!

The times I have to check and recheck what I write would have to be seen to be believed by anybody not sharing our enforced 'Spoonie'-dom! This often brings laughter. On really bad days, it brings tears of sheer frustration through exhaustion! Even after endless checks, some real "howler" mistakes slip through. As a grammar Nazi by natural inclination, few things are more galling to me than seeing errors I've made in print just through M.E., when before, I could have spotted them a mile off! The silver lining here is the empathy this frustration can give us for friends with dyslexia who deal heroically with word blindness all day, every day. Not just when brain fog descends.

Reading and writing are some of my principle joys in life. So naturally, I notice the changes to perception and information processing M.E. has brought.

Over Christmas, I was rereading Charles Dickens' "Great Expectations" on Kindle. I love Kindle. Light as a feather to lift and hold. Adjustable text size for aching eyes. Adjustable brightness for light-sensitivity. No cumbersome pages springing back or weighty tomes hurting your fragile wrists. Much as I love "real" books, with M.E. they present untold problems, though I hate to admit it as a book lover.

It shows how much M.E. changes your life when your mind immediately reads a capital "ME" as "M.E." in most contexts. I was getting tired and struggling. I was rereading a sentence, a paragraph, a short phrase time and again just to take in the meaning and follow the plot!

I was reading Chapter 20, where the hero Pip travels to London to be schooled to become a "gentleman" and fulfil the eponymous 'great expectations' predicted for him. In the lawyer Jaggers' office, Pip witnesses a heated exchange between Jaggers and a man called Mike.

I read the line:

"You infernal scoundrel, how dare you tell ME that?"

Of course, the capital letters "ME" at first jumped out at me as a reference to our illness! This wasn't helped when over the (virtual) page, came the line:

"Spooney!" said the clerk, in a low voice, giving him a stir with his elbow.

I don't recall associating either the capital letters ME or the word 'spooney' with a devastating neurological disease last time I enjoyed a Dickens novel! Really need to get out more, don't I? If only, eh?