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!) :)

Who's sorry now? Norway first to apologise to M.E. patients

 Keep your words soft and tender because tomorrow you may have to eat them.  ~Author Unknown

Norway's Directorate of Health Apologises for Treatment of ME Patients


News item so moving it got me choked up with thankfulness! Me and all M.E. patients alike, I guess.

Thank God  for the Norwegian Directorate of Health's compassion, wisdom, humility and determination to change, clearly coming through in this unprecedented statement:


"I think that we have not cared for people with ME to a great enough extent. I think it is correct to say that we have not established proper health care services for these people, and I regret that." -Bjørn Guldvog, Deputy Director General of the Norwegian Directorate of Health

Here in the UK, we've grown accustomed to government ministers who seem to have their faces set against ever saying sorry. Many seem to see apology as a sign of weakness. 

Today this is surely a welcome sign of true strength. The grace to listen to solid research, learn from new insights and the wisdom to embrace these and move forward, is overdue and so welcome now.

I so hope that every Health Authority and government across the world can listen, learn and follow suit.

Now there is no longer any excuse to lock up our fellow M.E. patients in mental institutions, or detain them on psychiatric wards for imaginary conditions that, as we ourselves always knew, they never had. Some are still there, and this must urgently be addressed across the world.

Thank you, the Norwegian scientists behind the Rituximab study that shows M.E. to be an illness involving an immune response.

Thank you to the Norwegian Health authorities who have embraced this, taking the path less travelled, to bring justice and hope to one of the most denied, mocked, misunderstood and devastating diseases of modern times.

‘Cancer drug may also treat Chronic Fatigue Syndrome’, WebMD Health News, 19 October 2011
 
When the news first broke, as it came so hot on the heels of the XMRV disappointments, we wondered what to think. 


I read the research the first day news broke, summarised on the M.E. Association's link above. I joked on Twitter that I hoped the ignorant cynics in the media would not read "somatic" as "psychosomatic"! Even though "autoimmune"/"immune system" are clearly spelled out in the next sentence, we've all experienced hack journalism only too eager to call black white when talking down M.E. and tugging its forelock to the popular psychological school of naysayers.

The two doctors say the results indicate that CFS is in fact a somatic decease. "We think that CFS is an autoimmune decease. The immune system has a central role in this," they say to TV 2 News.  
(sic. 'decease' in the article - should be 'disease' of course.)


With today's news of apologies to M.E. patients and the turning of the tide a little further towards full recognition, care and treatment for our illness, I'm hopeful that those who snicker about it being "all in the mind" will quickly go the way of the Tyrannosaurus, or better still, to be seen as the mythical dragons they really are. Monsters we don't need to be afraid of any more.

Please stop by and help give M.E. sufferers the chance of a future

You're busy? You don't have a lot of energy "spoons" to spare? 
This only takes a few moments.


Please sign this petition if you feel you can.


It calls for funding into bio-medical research into M.E.  
Not wasting funds on the psychological lobby or big pharmaceutical conglomerates with their own agendas.

The definition of M.E. as a neurological illness as classified by the World Health Organisation is widely acknowledged. However, why is the funding in the UK given to the psychiatric lobby and NOT into clinical or bio-medical research? Is it because this area is monopolised by those with particular vested interests?


Here is the petition: it will take a couple of minutes at most to sign. You can do this from the site itself, or simply log in from Facebook or Twitter.


38 Degrees Petition calling for Bio-Medical Research into M.E.

Here is what I wrote as my comment as I signed:

'M.E. is physically crushing to the lives of children, young people with all their lives in front of them, and hardworking men and women who suddenly have the carpet of health, life and livelihoods pulled out from under them in the misdst of their active plans, joys and dreams. Please don't crush us further by the outrage of calling this merely psychological. Bio-medical research is the only way to unlock this prison so please let this be the path taken in future.'

Please do what you're able and bless you for taking the time. 

 

Running out of spoons! Welcome to the energy juggling circus!

How 's it going today, flower? You DO look well!

Had a better night last night and slept through most of it. Which was nice. And refreshing!


Woke early with the Song thrush (I nearly just wrote "thrush" but that would have been a different problem altogether!) and the sunshine. No statins again last night. Supposed to be collecting a repeat prescription for more statins (along with loads of other meds) this afternoon, but not planning on actually taking any more Simvastatin any time soon.


Head felt clearer today, compared to often. Very clear, for me, which is delightful! That could be no more than a "good" day, I suppose, but it's always a great feeling, and I survive on balanced optimism!

Aches and pains at a minimum, which isn't that often the case. Took my 15mg Enada NADH with water about half an hour before breakfast. Blood sugars a bit up this morning 13.2 mm/ol, nothing unusual, but nowhere near perfect. Somogyi Effect or Dawn Phenomenon? Whatever! That's not my concern in this study.


Took 50mg CoQ10 with brekkie. Had a small spoonful of olive oil to swig it down with. Yes - it sounds disgusting but my breakfast was only fruit so didn't contain the right accompanying fats today, and I don't have the capsules that come with Vitamin E (an oil). Something to think about if I can afford to buy another lot after this.


Decided after breakfast chores, feeding the birds, catching up with emails etc, walking slowly round the sunny garden to take a few photos for my blog, that I'd better test this energy out properly.

As ever, it's all I can do to keep on top of jobs around the house and garden, even on the better days, so my first stop was cleaning the downstairs and upstairs loos which I managed perfectly well. (Oooh! Doesn't she look WELL? Yes, dear. *rolls eyes*).

Then I decided I'd take the dustpan and brush to clean up any obvious major fluff etc ready for a proper hoover through later or, if need be, another day. I started with great enthusiasm (as always!) downstairs and then it was time for the stairs, landing and bathroom. I managed all and felt pleased as I was finishing the bathroom carpet. So far so good.

 I went downstairs. This is a good day indeed, I thought. Then I began to make a drink. For the energy-bankrupt among us, drinks don't make themselves. There's reaching for a mug, walking across to the sink, cupboard, bin, drawers, pushing plugs, filling kettle, lifting said kettle, spoon, mug, balancing, pouring, stirring, turning, negotiating worktop edges. 

Sounds crazy, I know, but no wonder we're sometimes too tired to drink or eat what we prepare. 
And that's just for one!

 If there's a mate or mates with you, that involves talking, listening, understanding, showing caring by processing what you are hearing, co-ordinating jokes or replies if you actually want to show the real you inside this awkward mess, through the crash of cups and hiss of steam as your wrists buckle and you try not to misjudge the distance to your mouth or forget your train of thought!

All this costs units of energy for each part of a task. We start with a limited number of "spoons" as one clever lass explained it to her friend (bless you, Christine Miserandino at butyoudontlooksick.com!) Go look at her wonderful explanation of what it's really like to live with illnesses where you have limited energy for seemingly trivial tasks that others take for granted, here:

The Spoon Theory by Christine Miserandino 

It's such a great explanation of diseases like Lupus, M.E., CFS, M.S., Parkinson's Disease, Huntington's Disease, Hashimoto's Thyroiditis, Fibromyalgia, Gulf War Syndrome and so many other "invisible illnesses" which mean energy can't be taken for granted any more. Out of sight "invisible" doesn't ever mean out of mind, for those who live with them (even less out OF our minds!) Well, not more crazy than we were before, anyway!

As I picked up the coffee mug, I could feel the world slowly (not very slowly!) collapsing into painful slo-mo round me. No. Not hypoglycaemic. Just M.E.'s "post-exertion malaise", that hits like a sledgehammer at any time after exercise. That's why graded exercise is often counterproductive when administered to people with ME/CFS by therapists with no imagination or real experience of such conditions. The after effects of exercise are just that. After. Not when you see us "well" (haha!) doing it. Any time from a few minutes, to a couple of hours or quite often, the next day. Even when the "exercise" seems minimal. I wasn't exactly dancing as I brushed!


My hands, knees and back felt, if it doesn't sound too ludicrous, nauseous. So did I. My ears were ringing like an express train was going through a station inside my head. My temperature began to rise (no, I don't mean a bit of a hot flush!) and I was starting to get unsteady. My vision was starting to be blurred. My head was banging and my muscles felt as if they were turning to water. Water and fire and fog. My stomach felt so raw from the weak core muscles in my torso. My throat was getting sore and dry and my neck glands tender. Painfully tender.


I lay down for a minute or two (I wish it was that short!) to recoup my energy to begin again. But for the rest of the day I've not been able to. I managed to boil a kettle for soup, but wasn't even up to cooking, let alone eating much for lunch. Certainly nothing involving a series of complex "spoon" wasting processes!

Still, taken as a glass half full, that's a big achievement for me. I always think "what if somebody visits today without giving me a day or two to prepare?" I love visitors, even if my M.E. raddled body sometimes pays after they've left, unbeknown to them. I wouldn't want to be a recluse completely,  just to save the energy it takes to love your friends and be loved by them. (That's usually a very small and self-selecting group of true friends, as anyone who hasn't been able to have the common decency to be 100% fit again within the fortnight will know only too well!)

Folks are very kind in "not noticing" a layer of dust or a stray pair of knickers down the back of the radiator, but I know. I'd sooner be prepared so I can at least keep what energy I've got to help my guest have a laugh and to enjoy each other's company, not be secretly whittling whether I've had the energy/warning to check the milk's not gone off!



Not out of the woods with the M.E., yet, then, but I'm still thinking that stopping the statins may well maximise my chances of keeping a clear head, a more normalised sleep pattern and hopefully no extra muscle pain from the CoQ10 deficiency. If so, and the statins are hindering not helping, triggering even worse troubles, how can the medical establishment justify not warning people with diagnosed diseases of the central nervous system that they should either

(a) avoid statins or

(b) take hefty CoQ10 suppplements to redress the loss?


I certainly shall be!  I'm determined to be  fighting in the future to help make others more aware of these matters so we can all make informed choices about our own body's particular needs, and support one another with humour and hope.


I hope as my body starts to get statin-free and my CoQ10 built up a bit more, my cells will be increasingly able to make a better shot at sparking their own energy, as they have in the past after periods of severe illness.

Sooner rather than later, preferably!

Sleeping Beauty. Well, sleeping, anyway!