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!) :)

Brain Fog: Slow Down and Simplify, Please!

One of the better definitions of "Brain Fog" in M.E. I found recently here at www.brainfog.org

They rightly summarise how we spoonies struggle:

brain, n. soft, soggy, vaporous, cloud located in upper cranium between ears.

fog, n. soft, soggy, vaporous, cloud located everywhere else.

brainfogged, adj. when one is so completely foggy of heeed that they make sense to none but their own kind.

Cognitive dysfunction just doesn't cut it as an explanation, does it?  If you say you've got 'cognitive dysfunction', people raise an eyebrow in disbelief. If you've got letters after your name and educated to postgraduate level, having made a living with a large element of public speaking, they seem to think you can't be serious that this is a problem?

Mind you, brain fog also tends to be underestimated when you hit middle age. Everybody thinks they know it and suffer from it. They mix up a couple of words or lose their car keys and think this is what you're talking about in relation to M.E. It elicits as many "join the club" comments as "tired all the time" makes people imagine they understand what you're going through. It's why certain people still deliberately inhabiting the underside of stones continue to insist that "chronic fatigue syndrome" is an adequately descriptive nom de plume for myalgic encephalomyelitis.

With true organic M.E., this Brain Fog, which I can rarely type correctly first time without it ending up as "BRIAN fog" (!) that makes it sound too cuddly, often worsens alongside a slump in other symptoms. It's not just some sign of getting older. How we wish!

On days when pain, exhaustion, light intolerance, gastrointestinal issues and nausea etc are worse, brain fog wants its extra pound of flesh out of us, too.

For me, this means words (usually the most obvious nouns, phrases, verbs) go completely AWOL. Sparrows become strawberries. If you're lucky enough to hit on a word at all! Yes, it can be comic. But it sometimes fosters a feeling of frustration and almost panic, as people "helpfully" and usually wrongly, supply the missing word. Conversation becomes a form of cryptic crossword. I usually lose.

Now, on the infrequent occasions I'm well enough to speak to a group, every word has to be written down in case I lose my thread as my energy and voice quickly drains away. Extemporising is a luxury of the past. That's also why phone conversations are such a nightmare. Unprepared, you can't work out who is at the other end. Facts aren't at your fingertips; spoons and mobility are lacking to fetch them from distant cupboards or locked doors in the brain. There's nothing to pin your thoughts around and it can feel like exposed floundering in the dark. It's exhausting and humiliating.

With Brain Fog, sometimes I can't hold an idea, word, number, or phrase in my head long enough to use it. I read a phrase time and time again, losing the sense a moment later, which makes reading anything with a plot more than a little challenging! M.E. bloggers will all know the frustration of trying to remember an idea they wanted to write about, but forgot before they could even make a note of it!

Multiple choice is another minefield or a ladder into a dungeon with missing rungs. People will ask a question, and instead of pausing on a choice on which you can focus and decide, suddenly the first choice is followed with a barrage of alternatives. Meal choices, TV programmes, appointment dates. We can't process information as easily at such times. Even when the Brain Fog is just a bit misty!

Just give us a "yes" or "no" choice, once in a while, and please speak slowly! We aren't being awkward, we're just being chronically sick.

Is it just M.E.? Or am I sick and tired of being a bit peckish?

Food Hospital on Channel 4 last night caused such a shock wave of disbelief and anger through the online community of Tweeps with M.E. It's a wonder it wasn't top trending! Ulcerative colitis only got in the trending list yesterday, of course, because the news had broken that celebrity UC sufferer Darren Fletcher, Manchester United footballer, announced the disease would force him to take a long break from the game. M.E. hasn't made such headlines since the last of the umpteen times Emily Rantzen claimed to be "cured" by the Lightning Process before relapsing again!

Food Hospital's episode including "Chronic Fatigue Syndrome" came on the same day as BBC Breakfast revealed 1 in 100 secondary schoolchildren were "sick with M.E." This, of course, after being "diagnosed" in haste with some then "fully recovered" after six months. No Canadian Criteria used, naturally, where a whole range of diagnostic symptoms that include much more than mere "tiredness" have to last for at least six months anyway!

Viewers to the Today (link on yesterday's blogpost) programme were fed the old lie that "M.E." (the auto-immune, neurological, severe and chronic endocrine disease) was identical to the woolly umbrella term "CFS" (a collection of symptoms that can apply to any number of different ailments). All the old myths and dangerous half truths.

Then comes "Food Hospital" with its patronising, simplistic smorgasbord of pseudo-science. People wonder why PWME (People with M.E.) despair, faced with this relentless tide of misinformation. We all needed to take the phones off the hook last night to avoid the calls of well-meaning "friends" seduced by this plausible tosh, telling us they'd just seen a mainstream programme that showed a "cure" for our oh-so-annoyingly persistent multi-systemic physical disease!

The cure? Simple! The girl (Steph) who had been feeling less than well for some 13 years when she was a student, quite evidently had Chronic Fatigue Syndrome. NOT M.E., though no doubt one of the 52% of GPs "confident" in diagnosing M.E., or the 48% who still can't be bothered to learn about it, had told her she had M.E. In no way is this that poor lass's fault. I'm sure we all wish her well and health to enjoy the rest of her life.

The food experts, while peddling all the usual lies that M.E. could still be psychological in nature rather than physical, took a rough survey of Steph's perceived symptoms. Turns out she wasn't eating regularly. Most of her vague headache symptoms, aches and tiredness were down to blood sugar issues and dodgy eating habits.

Hey presto! The prescription?

1.Nibble a bit of dark chocolate (serotonin levels, blah blah blah, nothing new there) which she admitted on camera actually had no effect whatsoever.

2. Regular healthy eating. Which most of us, not least those of us with co-morbid conditions like Type 1 Diabetes, have followed with absolutely no effect on other complex M.E. symptoms.

Next thing we know, Steph is swimming. Slow but sure signs of recovery. They had to stick a bit of Graded Exercise Therapy (GET) in there, to placate the Psych school, didn't they? She's back at work, too, and Bob's your "fit for work" uncle! DWP kept happy (if deluded) too! Sorted! Simples!

-CFS caused by the above - cured. Tick.
-M.E. caused by faulty neuro-immune/endocrine damage - no dice. Cross.

Twitter was on fire. For genuine PWME, knowing we have each other's understanding is one of the few things that stop us despairing. Stop us going crazy under the added pressure of the media and government's refusal to show M.E. as it actually is. Not the way it would be convenient; that is, if it could morph seamlessly into Chronic Fatigue and then melt away with a bit of diet and lifestyle gobbledegook leaving patients glowing with health and grateful to every quack and charlatan.

WARNING: Don't watch the codswallop on the first link below if you actually have Myalgic Encephalomyelitis rather than a bit of mild "chronic fatigue" without
a) watching your blood pressure
b) having a pillow to punch and/or bite
c) being in a mood to laugh rather than cry
d) realising some of these buffoons will one day have to eat their words

The Food Hospital Series 1 Ep7 on Channel 4 First Broadcast 8-9pm 13th Dec 2011 Serious chronic neuro-immune disease or a bit tired and hungry? PWME watch at own risk! Opinions expressed on this blog are my own.

Dr Esther Crawley talks to John Humphreys on BBC Radio 4  (John Humphreys surprised it can be genetically inheritable, and happy to revive "Yuppie Flu" and "M.E. properly called Chronic Fatigue Syndrome" etc. Makes you realise what he was actually thinking when he was in the flat of a woman with M.E. in his benefit cheats programme.)

Dr Ian Gibson talks on BBC Radio Norfolk about who & what is really behind this refusal to accept M.E. as a neurological disease  Dr Gibson is honest about the real vested interests that insist M.E. is psychiatric. Namely the man who "runs the whole show." (*cough* Simon Wessely ??? *cough*). Surprise, surprise. So refreshing to hear someone with real expertise saying what so many have long suspected. We're not out of the woods. But somebody must be running scared by the truth!

Here we go round the mulberry bush...

Landline rang this morning just after ten.

Hate landline as I don't know who it is till I pick up. So can't get myself prepared with necessary info. On landline I often end up gabbling like an idiot and forgetting what I need to say through brainfog. Plus it's usually going to be some telesales pusher who's got past the Telephone Preference Service filter.

It was the secretary at the Diabetic Eye Screening desk. Same one I rang last month after I received a letter to say I'd had an earlier letter inviting me to make an appointment at the Diabetic Clinic for screening. I hadn't had any such letter. This letter I did get, said records showed I'd not had a screening with an approved optometrist. I had; the ophthalmologist at the same hospital which the Diabetic clinic had themselves referred me to after picking up some retinal bleeds about three years ago. I've been going to this same optometrist regularly several times a year since that referral.

So I had rung a few weeks ago to ask if I needed screening as well. This same receptionist had said then that this had arisen because they had had a letter from my GP to say I'd been discharged from the Ophthalmologist back into the screening system. The bleeds had gradually healed themselves but, as I'd pointed out, I had just got a new regular appointment through for this week in Ophthalmology. The GP obviously knew of some mythical discharge letter from Ophthalmology that even they didn't know about, since they'd just called me for another regular check-up.

On Wednesday, at said check-up, I'd deliberately asked the consultant whether his tests, looking at my retina, the Optical Coherence Tomography and other tests still counted as my "diabetic eye screening" (how could it not?). But he said I still needed to see the diabetic eye screening guys. OK.

So, I dutifully stood corrected and rang the receptionist back yesterday to say their letter was right after all, and please could I make an appointment with their screening programme at the diabetic clinic again? She said she'd need to talk to the ophthalmologist's secretary, as Ophthalmology now had my notes, and she'd send me an appointment for early December.

Follow?  Me neither. But, "Patient Fully Compliant", in the words the pharmacist once wrote on a form when doing the yearly review of all my medicines. (Or "Fully Complaint" as she actually put!).

So today, this phone call from the receptionist. She apologetically explained that she had indeed spoken to the Ophthalmologist's secretary, who said that as I had an appointment in another four months with him, I did not, in fact, need to be seen by the Diabetic Eye Screening as well. That would be just doubling up all the tests. As I'd thought from the start. There's a limit to how many duplicate photos of the back of my eyes they actually want!

Confused? I began to think maybe for a change I'm the only one who isn't.
Common sense told me from the off that the Ophthalmology was doing the lot now (remember it was the Diabetic Clinic during routine annual screening that referred me there originally!)

But common sense is no match for expensive computer systems that seem unable to pass a message from one hospital department to another in the same building. Common sense is a stranger when consultants say one thing while their secretaries struggle to follow what should really be happening.

Common sense isn't worth a bean in the tide of automatic mailings, wasted phone calls, paper and time. When the GP seems to be getting paperwork that bears no relation to what's happening up the road in the various hospital departments and clinics! We wonder why there's no money in the N.H.S.!

At least after hours of waiting, the consultant found no oedema in my retina after ultrasounding it in the O.C.T., in spite of some further deterioration in my vision this time.
It's crashed me M.E.-wise but retina-wise, not doing so bad for my three decades with diabetes!
Now just waiting to hear from Cardiology...

Have a heart! Yes, I do!

Well, I definitely DO have a heart. It's official!

Had my echocardiogram this morning at hospital, followed by being fitted with electrodes and the 48 hour ambulatory heart monitor (Holter tape).

With M.E., just making the bus journey at a fairly crowded, early time of day was more stressful than the whole hour long visit to the quiet, restful Cardiology suite! I was shivering cold on the journey in, sickened as usual by the motion, noise and light, my body struggling to regulate its temperature. But the journey is only ten minutes, so I'm very thankful for that! As usual, my mum stayed over to make the trip with me, helping by carrying bag, stick, coat and cardigan when needed! She really is such an angel in every awkward health situation. (Not to mention saving the taxpayer endless money in Carer's Allowance/DLA as she appears when most needed and asks nothing but love!)

On arrival at Cardio reception we were shown into the waiting area. Only two male patients waiting to be seen before me, so managed to spend the time resting and recovering with my eyes closed mostly.

Only about ten minutes after my appointment time, I was called in for the Echo. The lass operating the equipment got me to strip off above the waist while she got ready with another young woman at a computer screen outside the curtained-off couch and echo machine. Sporting my fetching hospital gown, (soon unlaced again to allow access to all areas!), I was to lie on my left side on the couch, right hand resting on my legs, left supporting my head.

By now, to be honest, my head was spinning a bit. The most difficult thing was probably maintaining that slightly uncomfortable positon without giving the impression my unsteady discomfort was in any way attributable to the very capable and efficient echocardiographer! I managed a few jokey comments along the way, but spent most of the time with my eyes half closed trying to put all my energy into maintaining my position and keeping still and quiet for the scan (i.e. without twitching or keeling over!)

This was the standard Transthoracic echocardiogram. It was a cold autumn day for icy gel to be applied, so a good connection would be made between the hand-held transducer and my hot little chest!  My muscles are so sore with the M.E. that the first contact with the business end of the transducer was rather painful. I was honest about it when the operator asked, but assured her it was me being tender, not her being heavy handed! The high frequency ultrasound waves pinged through my upper chest before the transducer was moved to underneath my left breast in several positions to view the heart from different angles. These sound waves bounced off the hidden corners of my heart. The glugs and roars audible from time to time convinced me it was still beating!

Then I hauled myself back over onto my back and the transducer moved to the top of my stomach/between my breasts and finally onto my neck with raised chin. These last few places are the ones where my current palpitations are most often felt. I must have had 3-4 heart "skips" during the whole process. No idea if these showed up or not till I see the consultant again.

Then this part was over and I cleaned up the copious amounts of jelly from my torso. Only need some custard to go with it, I joked feebly. I found the bit I'd missed near my throat when I put my jumper back on. I could see the missed gel seeping through then, as if I'd dropped my breakfast down me!

Back into the waiting area where my mum was sitting like a pack horse under a mound of my cast off belongings and outer clothes necessary for a cold draughty bus ride. She was talking to the wife of another patient, similarly burdened by her husband's outer garments while awaiting his return from the land of mysterious beeps.

 A few minutes and I was called into another side room for the fitting of the 48-hour heart monitor. You can see the equipment used, if you haven't had the joy of this procedure before, in the accompanying photos in this blogpost.

The lovely nurse who called me through fitted the electrodes while another younger nurse helped to explain and do the paperwork. They were very helpful indeed. Although the department normally asks for the monitor to be disconnected and returned to Cardio Reception between 8.30am-9.30am on the third day, because I have a diabetic ophthalmology appointment on Wednesday afternoon, they were more than happy to let me drop the monitor off later when I'm in the hospital for that. This was such a blessing and relief, as it means two sickening, exhausting bus journeys saved in the same day which would have probably knocked me out for the rest of the week.

I've got a spare set of electrodes in case the originals get wet or detached. I've an A4 sheet ruled as a diary to record date/time/activity/symptoms. Whenever I feel the palpitations, or any breathlessness, dizziness/faintness or chest discomfort, I simply record the time and symptom in the diary, also pressing either the yellow or green buttons on the monitor to make it easier for those analysing the tape to spot the relevant moments recorded. All simple. Even the electrodes are colour coded in order of placement on the body - like traffic lights. Red on the left lower chest side, yellow on the upper right chest and green on the right side of lower chest. Even having trouble with telling your right from your left, the diagrams should keep you ticking over!

The actual monitor itself is as light and small as a mobile phone and clips easily onto the waistband of trousers, skirt etc. The wires tuck away discreetly and the electrodes itch from time to time but are hardly noticeable.

I'm completely frazzled now. Hardly surprising! All this and a phone call on my return, from a good friend not seen since I was working full time as a minister on the South Coast has left me struggling to put one finger and thought in front of the other. There'll not be many "activities" on my diary page for the rest of the day, I reckon!

I'll keep you posted! They'll book me a follow-up session with the cardiologist after the monitor's returned on Wednesday. Hope this'll help reassure anybody going through similar.

Shhhh! Do you want to know a secret? We all do!

The Official Secrets Act: strange bedfellow for M.E./CFS?

This disease has robbed me of my prime of life: why do you want to keep me in the dark? 

So much for the Hippocratic Oath. So much for integrity! 

The lunatics have taken over the asylum!

The disgusting corporate secrecy about M.E.

I've just reread this information from Invest in M.E. after quite a while trying to save spoons by not reminding myself of the depth of the baffling injustice here. There's still a dent in the wall from last time I read it! Nothing's changed.

Tweeting with a friend about it today, I realise I am no nearer to having an explanation.  Why this sickening, perverse secrecy about the physical illness that has robbed us all of chunks of our lives and left us prey to every sling and arrow from the disability haters and arrogant welfare reformers who believe their arbitrary time limits can spirit away "chronic conditions" that medical science has yet to cure?

Why oh why do the Medical Research Council even have "secret" files on M.E./CFS? How can they possibly justify sitting on them, invoking the Official Secrets Act, till the 2070s? It's like something out of James Bond, only without the glamour and blockbuster theme music! I am still shaken, and very much stirred.

This article points out that the secrecy seemed to begin when the discredited psychiatric lobby came to prominence with their touting of CBT/GET to torture us and convince the world we are malingering fugitives from bedlam and the workplace.


One alas-not-so-secret document quoted, the 2007 NICE Clinical Guideline, trots out the old CBT advice: " “The first duty of the doctor is to support as much useful function as possible and avoid the legitimisation of symptoms and reinforcement of disability”.




You don't need to "legitimise" what was never illegitimate in the first place! Life-crushing disability descended willy-nilly without any need for reinforcement!

 I can only conclude that, as the psychiatric lobby realised with rising panic and horror that bio-medical science was about to reveal the organic multi-systemic autoimmune mechanisms in M.E., so consigning their frankly flawed analysis to the dustbin of historical dead ends, they marshaled all their weapons to keep the "truth" in their pockets.

☞ Hence Simon Wessely's flirtation with with stardom as darling of the press this summer. 

☞ Hence the mockery and disbelief that seems still to be sanctioned about the illness.

☞ Hence the postcode-lottery-think-of-a-number-and-double-it Russian Roulette we face of getting health professionals who even understand, let alone help and treat us in an enlightened way

☞ Hence the obscene clampdown on these unseen M.E. documents until most of us are conveniently dead and beyond redress.

Disclosure would not suit the egregious oafs who refuse to back down, apologise or admit they were wrong or minimise all the damage they have caused to so many for so long.

Or am I wrong? Have you a different explanation? Have you a fresh insight on this? I'd so value hearing from anybody else who perhaps can throw any further light on this, or just needs to express what they feel about it.

"The law is a ass - a idiot!" says Dickens' Mr Bumble in Oliver Twist.

The law is erring on the asinine side here, I suggest. But what do I know?


But time's not on my side. And, perhaps mercifully, I won't get a chance to "only live twice!"

Don't need the cardiology to have a change of heart

Got to believe the doctor girl
He told me yesterday (yes he did)
Said you don't need the pharmacology
Cos I want you baby - I do want you baby
Don't need the cardiology

                                To have a change of heart.  - Scritti Politti 'Philosophy Now' from the album 'Provision'.   Quote from one of my favourite musicians, Mr Green 'Scritti Politti' Gartside, which sprang into my head as a slightly skewed summary of what just happened this morning. 

Well, for a start, my doctor isn't a 'he', she's a she, and she saw me today as arranged about a fortnight ago, not yesterday. But the rest is appropriate!
I'd reluctantly gone to see my GP to put friends and relatives minds at rest over the palpitations and tachycardia I've been having since my massive 'lost two hours of my life' hypo late last month. The one where my Mum found me slumped on the edge of the bed wielding one of my contact lenses and a nail file grunting "Grrrr - I DUNNO!!!!!" and smashing the proffered jelly babies out of her hands to fly across the room. Yes, that one.  My doc listened to my heart through the stethoscope and found it was pounding over 100bpm (white coat syndrome, though with her I feel quite relaxed?) though apparently regular. I had one palpitation late into 20 minute appointment. Flutter - swing. In the middle of my chest very slightly to the right.  She immediately made an appointment with the cardiology department of the local hospital in town, for a week today in the afternoon. Quicker than I managed to get an appointment with her, anyway!  I have been off Amitriptylene (NOT for depression, rather to help pain killers to work more effectively and to aid sleep with M.E.) for three years, and we were considering giving this another try to help the debilitating pains in chest, neck, arms, wrists etc. However, as  Amitriptylene can cause the heart to speed up, we decided it wasn't the right time to prescribe it until the heart problems are sorted one way or the other. She also advised me to run my blood sugars on the high side of normal till then so as not to put any more strain on my heart through hypo-induced heart-racing.   So I "don't need the pharmacology", well, no more than all the stuff I'm taking already and hopefully next week's trip to "cardiology" will also show I won't need "to have a change of heart" either! Long family history of valvular heart disease, strokes, atherosclerosis, cardiovascular early deaths notwithstanding! Is this maybe P.O.T.S. (Postural Orthostatic Tachycardia Syndrome) as part of the M.E.? Not always when I stand up, but also when I'm sitting? Will know soon enough.  Completely bushed now. No change there then! I'll keep you posted.

M.E. in England; are you in a hot spot?

East Yorkshire where the incidence of M.E./CFS is reported to be lowest

Study shows prevalence of M.E./CFS in 3 areas of England

Interesting article. Having pulled green wheelie bin round side of house today am unable to engage brain now. Figures here keep defeating me this morning!

The study focuses on three areas, (though I could only see two tbh) of England comparing the numbers of M.E./CFS patients diagnosed under the various criteria, by electronic search for CFS records, and from reports by GPs. Some distinction is at least made here between M.E./CFS and cases which involve "chronic fatigue" but which do not meet such guides to diagnosis as the Canadian criteria.


The crux of this seems to be


a) London has highest number of cases


b) East Yorkshire has the lowest.


My case down the road in South Yorkshire is defeating me today. I'm struggling to find or hit the right keys and just spent almost ten of your earth minutes locating "close brackets" on my keyboard!

Let's cut to the chase:

Conclusions: ME/CFS is not uncommon in England and represents a significant burden to patients and society.

The number of people with chronic fatigue who do not meet specific criteria for ME/CFS is higher still. Both groups have high levels of need for service provision, including health and social care.


Unquote. Yes; and yes. Didn't that go without saying?

If this is further step towards diagnosing and supporting those with the disease, as well as looking to define sub-groups and moving towards suitable treatments, all to the good.


The article is enough without my searing brain-fogged analysis!

Sorry! Catch you later! (Maybe when I've had a full neuro-immune system transplant!). Spellchecker rocks.

Several spoons saved! One-stop pharmacy comes to town

A bridge too phar - macy? Not this time!

Forgive me if I was a bit sceptical.


When a new 24-hour 7-days-a-week chemist opened up within my local GP practice last month on the outskirts of Rotherham, I wasn't immediately dancing with enthusiasm (supposing dancing is ever on the agenda since M.E. struck!)

My village has several pharmacies: my usual one is the Co-operative chain chemist at the far end of the main parade of shops. Then there's another attached to a clinic near the roundabout at the other side of the dual carriageway. As well as a small herbalist who dispenses aromatherapy oils and blank looks if you ask for something in particular.

Enough pharmacies to go round, methought.

As an M.E. patient, I have several problems with the new arrangement. The counter of the new pharmacy faces back into the GP waiting room opposite where the windows are for the doctors' receptionists.

More noise.

Less quiet places to sit.

Less time to brace myself against the glare and hubbub. The voices of the pharmacy staff and the receptionists, not to mention the waiting patients has upped the volume, muddle and cross-babble in my sensitive eyes and ears. On a bad day for me, or when the surgery is busy. Insurmountable and inevitable, of course, in most public places!


You have to come in further off the street to stick your prescription in a box now. The other was a slot not far from the automatic outer door. After all these years this apparently constituted a security risk. This coincided with the opening of the new pharmacy, of course, but nobody could be just honest enough to say that caused the relocation!

For me it means a few extra energy 'spoons' spent in and out, a more awkward juggle with prescription, lid of box, walking stick and whatever else I'm trying to carry if it's a day when I have nobody with me to help in any way.

This sounds so nit-picking. Honestly, if you knew me IRL you'd know I'm not thinking this in a whiny voice but with tongue often in cheek and usual clown's hat on. I'm blogging it here because I know those who visit my blog will understand these things. And maybe find relief that somebody else understands the daily challenges they face too! 


Returning from Diabetic Clinic late one afternoon (when is Diabetic Clinic not late, plus draining, agonising bus journeys there and back?) I had a new prescription from the hospital pharmacy as I went on the way home to collect a repeat prescription for some of my usual drugs from the GP surgery. The new one was for Atorvastatin, a low dose the Diabetic consultant wanted to try because the old Simvastatin was playing havoc with my M.E. and because stopping taking it had rocketed up my cholesterol again!

When I was too brain-addled and eager to get home to protest, one of the pharmacists who filled my other regular order asked if I'd like to fill in a form. To make things 'easier' and 'smoother'. Oh yes. Why not? I'm so full of energy, clarity and co-ordination, here, aren't I? But I smiled my usual smile, listened to his spiel and dutifully filled it in/out. It was simple:  just name, address and signature on a note to my own GP authorising the dispensing of the drugs on a regular basis.

Only when I came this week to need a repeat of some other stuff did the questions start to intrude. Would they need my diabetic medical exemption card flashing round in public like the Co-op does as they bawl your particulars around to the crowded shop?

No stress, in fact. While I had been filling the form that evening, the pharmacist had made a note of my exemption card's details for future reference.

Previous scenario: need to get the prescription from the GP reception, fill in my details, exemption etc after finding somewhere quiet to sit, a pen, recall the current date, locate a surface to write etc (the chemist itself was always too chaotic for me to attempt this on their premises) then trail round to the far end of the mall, queue, find out they can't fill the prescription for twenty minutes or an hour. So kill time slumped in an impossible armless chair contemplating the incontinence aids and remaindered Girls Aloud false eyelashes.

Next find out, when your name is hollered out and you manage to remember your address in front of the deadpan staring shoppers, that at least one item is inevitably unavailable and you have to make the whole return at an unspecified hour the next day when stocks would or would not be delivered. 

If all this joy was denied and no physical prescription was given into my hands, how would I fill in the next drug list, from the old prescription, ticking the boxes by each of the drugs that stretch to a couple of sheets? Fear not, O ye of little faith! This afternoon all was explained.

My exemption card kindly waved away, all the medicines dispensed correctly in one go with no backchat, bawling, or public humiliations, I found my prescription drug list discreetly enclosed in the package. Plus an ad for the upcoming flu jab for we vulnerables (???) at the surgery in October!


All this and, miracle of all miracles, the new statin had seamlessly replaced the old on my medicine list. Unlike in the past, when the list was never updated and I often had to write on my own drugs' names and dosages in Biro and draw myself a little box at the side to tick.


We are in the 21st century guys! I've grinned so much now I really need a lie down!