Gardener's Whirled

Four facts led to me being crashed today
(Four facts that show why pacing is such a challenge!): 

1. This weekend was one of the sunniest of the summer so far.

2. Mum comes to stay at weekends when she's free, to take a bit of the strain by helping with things like shopping or odd jobs around the house and garden that I can manage with a bit of help on a good day.


3. My neighbour was away for the weekend. Meaning I could stumble around her garden grunting, groaning and intermittently slumping with pain and weakness without being overlooked or causing concern.

4. I was ambulant with mild to medium M.E. distress that day after a relatively rested-up week.


These four circumstances meant I felt I had to take advantage of the opportunity to tackle a job I didn't even manage at all the last couple of years. Cutting back the lilac tree with the extended loppers.

It's a job which, pre-M.E. collapse, or in a period of remission, I would attack with relish and pursue till the tree was clipped back to within an inch of its life!


This weekend, picture the sun shining, my tiny Mum holding the little step stool that gave me the extra inches height needed. Thus I could theoretically reach the upper branches, Mum cheering me on,  holding things when my arms and legs gave out, fetching and carrying to save me vital atoms of energy along the way.

As they often appear to, when strength is lacking, things contrived to hamper the process. An illusion, but no consolation when you're wheezing, trembling and dizzy with effort and your calf muscles are jerking like a weasel in a wind tunnel!

The long string with a toggle on the end like the toggle on a duffle coat from the 1970s, that runs the length of the extendable lopper  handle, managed at a crucial moment to hook itself high in a cleft branch. Of course it did! Things had been almost finished enough to allow me to lie down and try to recover!


What little strength and coordination I had left in me was rapidly frittered away in futile attempts to retrieve the rope from the upper twigs with various articles: my walking stick, the pole on which the clipper head is mounted, the Y-shaped stick used for hiking through the countryside that I bought at a country fayre when I still enjoyed the prospect of using it on rough roads!

Eventually with the last iota of ingenuity and brute force in my defiant, stubborn body, I half dragged, half willed away the recalcitrant twiglet holding the rope aloft, and the whole thing fell back towards earth to a place I could reach.


I finished the job. Or it finished me. It was a fine line dividing victor from vanquished.


Shattered, I was pathetically pleased with myself. The lopped limbs of the lilac were like battle spoils or captured chess pieces.

Lilac tree-  0. Me even with M.E.- 1! 

 


The coffee Mum made me when I was finally able to stagger, half blind with hypoglycaemia, nauseous and shivering with exhaustion to a more horizontal position, was sweet indeed, not with sugar but satisfaction.

I haven't recovered yet. Not anywhere near. To be honest, today I can hardly string a sentence together without mistaken words or forgotten threads. When I can sit to type, everything has to be checked and rechecked and squeezed out reluctantly from my crashed brain. I woke constantly in the night with twitching limbs on fire, rolling around on the familiar burning bundle of my own internal organs, as it seems. My ears are ringing, nausea stalks me, my eyes feel blow-torched. 

But this debilitating cocky disease will NEVER keep me down.


They Might Be Giants' new album 'Join Us' came out this week. I have had it on almost back-to-back continuous play since its release, when as a member of their first "Instant Fan Club" the band sent it to my inbox as an mp3 download last Monday. This and the grin-inducing privilege of seeing my my name among the other 1000 lucky fans in the digital artwork!

The opening track is the whimsical, mock-defiant "Can't Keep Johnny Down". I sang along with such relish that time, fresh from my wrestling match and ten rounds with the lilac. Singing like a madwoman, beaming and thankful even though my neck glands were already feeling swollen and stiff with pain from my efforts and my hands shook imperceptibly guiding the cup to my lips in between phrases.


M.E. often appears to submerge my best efforts, my rallies, my recoveries under a tide of payback as it temporarily sucks me under the quicksands of neurological meltdown.

Maybe I was extra blessed that my old neighbour was away as I sang with all the strength I could still muster:

And they can't can't keep Johnny down!
They haven't yet built the man that'll keep old Johnny down
And they don't don't know what I've seen
Thay can't know what's in here and they can't keep Johnny down! (c) TMBG

For me, M.E. keeps trying and periodically getting the upper hand. But it can't crush my spirit and it never, ever will!

Leukaemia Link?

The more-than-excellent NICE GUIDELINES BLOGSPOT which is always picking up information for those affected by M.E., today points us in the direction of a U.S. news item.


I haven't any spare energy to sit up typing to discuss this today, but needed to mention this.


Apparently in the U.S.A., a warning is being sent to the national blood banks advising against taking blood from those with "Chronic Fatigue" as it is still vaguely called over there.*

This is because a new study (so many unrelated studies with no joined-up thinking or focus, aaaaaaaargh!) has suggested a link between Chronic Fatigue and certain kinds of leukaemia.


My thinking's a bit woolly this morning. Before I go lie down in a spinning, burning vortex, though: What does this mean? Is it actually proven? Will we read next week that it isn't a valid study and it's all back to being in our heads? Will those with M.E. always be the last to be informed?

Rant over. Judge for yourself by clicking on the link above and taking a look at Dr Speedy's blog today, which includes a link to the US TV report.

Stay strong but also be gentle with yourself. 

*The terms 'chronic fatigue'/'chronic fatigue syndrome' etc are vague and unhelpful in defining this disease. They concentrate only on one of many symptoms, which is then frequently misunderstood as normal 'tiredness'.

It's like calling cancer 'liability to pain and not feeling A1 syndrome'. Nobody would allow that, and rightly so!

Research points very strongly to the fact that Myalgic Encephalomyelitis (M.E.) is a more accurate name for the disease, which is not just some collection or 'syndrome' of self-reported symptoms. The name M.E. refers to the disease's widespread inflammation and multisystemic neuropathology.

CFS is a dismissive, unhelpful umbrella term which discourages further research and encourages devastating misunderstanding of a disease which cripples thousands and has lead to death on more than one occasion through such ignorance. M.E., on the other hand, refers clearly and correctly to the proven underlying pathophysiology of the disease.

Playing doctors and nurses: M.E. outbreaks most common in hospitals

Royal Free Hospital, London, scene of the controversial 1955 outbreak

“Disease is very old and nothing about it has changed. It is we who change as we learn to
recognise what was formerly imperceptible.” J.M. Charcot

This quote introduces a new study by a doctor, E.D. Acheson from New York who says that out of 14 outbreaks of M.E. in one study:


7 = staff in hospitals
2 = in semi-rural communities
2 = in large cities
2 = in small towns
1 = in an army barracks


You can see the study summarised helpfully here:


The Nice Guidelines Blogspot

and the whole paper here: 


http://www.meresearch.org.uk/information/keypubs/Acheson_AmJMed.pdf


You may well have heard, like me, of the M.E. outbreaks at the Royal Free Hospital in 1955 and 1956. This is sometimes cited as related to the physical illness Myalgic Encephalomyelitis. The Wiki still mutters with vague waffling about "mass hysteria"!

M.E. has been associated with such documented outbreaks since long before the World Health Organisation finally classified it as a serious neurological, auto-immune, multi-systemic disease.

So how is it, given its prevelance among health workers, that doctors and nurses are often among those most resistant to recognising the illness?
Running scared?
Playing: "If I can't see you, you can't see me?" with the disease that stalks their corridors?

It smacks of the same perverse spirit as the assertion that M.E. sufferers must not give blood for our own protection!


If more of these affected medical professionals actually recovered enough to feed their own painful experience and first-hand understanding back into the health services, what a different perception there would be!

Individuals like Dr Charles Shepherd, an M.E. patient himself, are shining examples of those doctors affected who fight so hard to raise awareness of M.E, wherever they can. We owe them such a debt of gratitude. But it doesn't seem to be the norm for doctors and nurses to have insight into M.E. even in 2011.

So much more is needed.


If you are still confused what M.E. actually entails, M.E. Action UK has a page here http://www.meactionuk.org.uk/definition.html
which makes it plain. M.E. (CFIDS or that woolly, patronising umbrella term CFS) is not just feeling a bit tired and depressed! (We wish!)

---

"30 Things About My Chronic Illness" Meme

National Chronic Illness Awareness Week (Sep 12-18th 2011) is a little way off, yet. But on their website:


Invisibleillnessweek.com "30 things meme"


they suggest a great idea for sharing what living with an invisible chronic illness really means.


My immediate reaction was Number One: I REFUSE TO BE DEFINED BY ILLNESS. WHO HAS EVER HEARD ME WHINE? I AM ME!


But it's important for all society to learn more about coping with invisible chronic illnesses. 

Important for those who are ill.

Important for their acquaintances who are luxuriously smug now that they'll never develop an invisible but very real illness themselves.


Important for their families.


Important for their loved ones.


Important for their employers and colleagues.


Important for their doctors and consultants.

Important for decision makers and politicians.

Important for everybody in this wonderful, challenging world.


So here's my contribution to the meme project this year.


This is what it's important to know if you care about me.
If not, please look away and enjoy your day!

The words in heavy type below are the 30 things suggested by the Invisible Illness site.
The italics are wholly my own.


Please feel free to comment or contact me, or even better, visit the Invisible Illness Week website here

Invisible Illness Awareness website link 

and spread the word, share your own story!
 

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Myalgic Encephalomyelitis complicated by Type 1 Diabetes with little warning of hypoglycaemia.

2. I was diagnosed with it in the year: M.E. (diagnosed 2006); Type 1 Diabetes (diagnosed 1984).

3. But I had symptoms since: M.E. - about 1992 when I was laid low with giardia and amoebic dysentery while working in Bolivia, South America. 3 bouts of shingles in my head (Easter 2000, 2004, 2008) are also thought to have had roots in the M.E. I collapsed on 24th October 2005 after my annual flu jab recommended for diabetics. It usually made me ill each year, though never so badly as 2005. I think my diabetes began about the time I began university in 1980, but the doctors (when I was driven to attend!) always vaguely put my thirst and weight loss etc down to "stress" and "my age" (early 20s????) until I walked into my GP's office in sheer desperation in July 1984 with a urine sample and a request to be tested for diabetes after the penny began to drop. I was hospitalised with BG in the 30s the same afternoon. *rolls eyes*
 
4. The biggest adjustment I’ve had to make is: going from being a busy, popular, in-demand member of society known for my sunny optimism, hard working, innovative, lively nature and compassion, to somehow ending up classed in the same boat as benefit scrounging scum and spoken of as if I wasn't still here inside. My beloved two mountains bikes rusting in the shed. No longer being able to pass everyone in the street as they laugh and say "Are you in a rush?" and having to pace myself when real life just doesn't work like that!
 
5. Most people assume: that it's all about some vague "tiredness" or "fatigue" we all get after effort, and not a bone-crushing, disabling multi-system sickness that knocks the legs from under you and affects every part of you, brain and body, digestion, thought and strength/co-ordination. They assume when they actually see you on a better day, because you might actually be out of bed/the house, you must therefore be 100% well!

 
6. The hardest part about mornings are: hearing the post drop on the mat and dreading what new bill or humiliating DWP form it may bring. Not having slept well at night means I  no longer wake at the crack of dawn raring to go. Well, I'm still raring to go, but my body says "no"!
 
7. My favorite medical TV show is: nothing that mentions M.E. as I dread the old myths and lies being peddled yet again. Probably "Embarrassing Bodies" on Channel 4.
 
8. A gadget I couldn’t live without is: My laptop, keeping me in touch with friends, colleagues, campaigning, shopping etc when my illness scuppers going out to maintain such links with my real life. Or my walking stick, when the ground appears to turn to rubber like the cake-walk from hell!

9. The hardest part about nights are: Every sleepless second spent lying on the invisible burning mat of feverish pain and muscle spasms.
 
10. Each day I take loads of pills & vitamins. For Diabetes: short acting and long acting insulins 5 times a day, metformin (trialled with type 2s but also useful in insulin resistance after years of type 1), statins for cholesterol (side effects possibly because their leeching effect on M.E.'s depleted source of Co Enzyme Q10 made me have to discontinue/change these recently), ACE inhibitors for high blood pressure. 
For M.E.? Having tried low-dose amytriptilene and melatonin (bought not prescribed!) in early days, now just painkillers/anti-inflammatories (ie aspirin, ibuprofen and paracetamol) which have little or no effect anyway!
 
11. Regarding alternative treatments I: have tried quite a few for myself over the years and have resisted the patronising and impractical suggestions of psychological "therapies" read about in newspapers by well-meaning friends of friends, because those same articles they read are still in the dark ages about M.E. as a physical, neurological, multi-systemic illness and not some form of idleness and/or depression. Why do they not remember how unlikely it is I'm depressed?

 
12. If I had to choose between an invisible illness or visible I would choose: visible. Any day of any week.
 
13. Regarding working and career: I have gone from virtually being on call 24/7 to being forced into early retirement from my beloved ministry. Voluntarily preaching for an hour a month now often leaves me crashed and unable to function  properly for days or weeks afterwards. I long for the day my health may be reliable enough to resume work in some form, but at my age and with my history, the flexibility needed to enable this still seems a distant prospect.
 
14. People would be surprised to know: I'm still exactly the same person they used to know, just sicker, and I despise the way they see me now.
 
15. The hardest thing to accept about my new reality has been: the way the media, medics and society in general treats me just because I have been stupid and awkward enough to have developed M.E. on top of my diabetes. Greedy cow! What was I thinking?
 
16. Something I never thought I could do with my illness that I did was: Become bolshy enough not to apologise for it, and channel that controlled  frustration and rage into helping others raise awareness.
 
17. The commercials about my illness: What commercials?
 
18. Something I really miss doing since I was diagnosed is: Cycling. Walking for miles and miles. Playing (ie lifting) my accordion and singing without huge payback.
 
19. It was really hard to have to give up: Independence.
 
20. A new hobby I have taken up since my diagnosis is: digiscoping (birds in the back garden with a camera through a spotting scope).
 
21. If I could have one day of feeling normal again I would:  thank God and go on raising awareness to help others not so blessed. Run to the edge of a cliff in Flamborough and stand laughing into the wind blowing in from the ocean.
 
22. My illness has taught me: what a difference a day makes. Laughter definitely IS the best medicine.
 
23. Want to know a secret? One thing people say that gets under my skin is: "Glad to see you looking so well!" (though better than looking like a miserable whining git, I reckon!)

24. But I love it when people: Genuinely want to educate themselves about invisible illness and show sensitivity and compassion. Like them, I never thought it would happen to me.
 
 
 25. My favorite motto, scripture, quote that gets me through tough times is: Lyric:"There's only one thing that I know how to do well
And I've often been told that you only can do
What you know how to do well
And that's be you,
Be what you're like,
Be like yourself,
And so I'm having a wonderful time
But I'd rather be whistling in the dark" (They Might Be Giants, "Whistling in the Dark" from 'Flood'). 

Scripture:1 Peter 3:15: "But in your hearts set apart Christ as Lord. Always be prepared to give an answer to everyone who asks the reason for the hope that you have. But do this with gentleness and respect."

Invisible illness related: "No, I don't look sick. You don't look stupid, either." 
 
26. When someone is diagnosed I’d like to tell them: You're not alone. Be gentle with yourself. Don't let anybody or anything crush your joy. Sense of humour and love is the greatest gift you could be given.

 
27. Something that has surprised me about living with an illness is: The depth of people's wilful ignorance and casual cruelty.
 
28. The nicest thing someone did for me when I wasn’t feeling well was: Fetched a prescription for my mother out of normal hours, knowing without needing me to ask that I couldn't fetch it myself.
 
29. I’m involved with Invisible Illness Week because: I want to change the world for others struggling with misunderstanding and ignorance, to make a better life for everyone in this position, as I would have wanted to do before I was affected myself, and would want to still when I am well again.
 
30. The fact that you read this list makes me feel: Blessed. Blessed you bothered to stop by and try to understand. Please don't waste the opportunity to grow and learn from this. Thank you!

         

Chronic Fatigue Link to Diabetes?

US study identifies fatigue as one of main challenges faced daily by diabetics


It doesn't account for all the muscle, nerve, balance and numerous other multi-systemic symptoms M.E. patients live with. But this study is of interest to those of us who also live with Diabetes.


Before I developed Type 1 in my early 20s, I heard of the friend of a friend who could struggle through the week with his diabetes, but was then invariably forced to sleep for a day solid to catch up.


Fatigue has always been a bit of an issue for me, even before I was officially diagnosed in my mid 40s with M.E. after two decades of diabetes.


We know that fatigue and sleep deprivation can quickly lead to other more complex physical symptoms involving muscles, cognitive function etc.


So, will medical research one day uncover a more tangible link between these two conditions? Even with the tightest control, ideal weight, perfect HbA1c results etc, I still have all the M.E. symptoms to a disabling degree after activity. This new study's assertion that:


People with poorly controlled diabetes are often dehydrated and vitamin B depleted. These can be significant factors causing fatigue

certainly doesn't apply to me, these days.

This weekend, for example, after an hour's engagement in leading a church service, even after sleep and rest, then another session of helping a friend with her PC problems, I am all but wiped out today. Pains everywhere, so unsteady I'm having to lie down as the ground 'liquefies' under my feet, sleeping, muscles so weak they're jerking and with my body temp and BGs all over the place. My sugars have been lower than low for no obvious reason followed by two days of double figures. Not through carrying extra weight or eating unwisely.


So it's not simple to solve it. But maybe diabetes research may feed back into M.E. research in time. I've blogged here before about the link I read about between M.E. and hypoglycaemia. Food for thought, at least.

HbA1c you later! Diabetes and M.E. in combo

Here's the promised update on the diabetic clinic yesterday afternoon.

Nearly an hour's wait. Not too bad, then! A nurse came specifically to tell me I would be next in to see the principle diabetic and endocrinology consultant Dr M.

I was the most compliant and least disgruntled patient in the impatient waiting area. As usual. Others were getting sarcastic and restive. As usual. So why she bothered  to come to me to do any special pleading I have no idea. Perhaps she was disarmed by my wry smile of understanding I flashed at her as she beetled in and out of the blood pressure office laden with files and test results.  I wasn't even next one in, either, as it turned out.

I could see from the boards that the other two registrars, Dr V and Dr H, the female doc I'd seen the last two times, were also seeing patients. I had seen the male registrar pop his head out the door while I was in the "weeing and weighing" curtained-off area while I was being checked in, standing on the scales with my sample bottle held in one hand.

I managed to balance without my walking stick for the duration of the short session behind the curtain. I leaned on the wall in between the weighing and measuring shenanigans. Not during, or I might have appeared to have taken off several stone in weight, or, possibly, to have smuggled in stones in my pockets. It has happened in the past, I'm sure, considering the hard time diabetics are often given, whether under or over the prescribed BMI. I'm fortunate since carb counting began to be well within the limits, even erring on too thin if I don't watch it. "You haven't got a bum at all, have you?" Unquote.

Blood pressure was a bit up, but not alarmingly. White coat syndrome, or just the strain of negotiating a draining walk and bus-ride to the hospital, already using up most of my precious M.E. energy "spoons" for the day. The overhead lights in the Outpatients Clinic are like lasers beaming mercilessly down into your eyeballs. Speaking as an ME patient. I wished I'd worn my shades. The floor was already feeling like a cakewalk by the time I was finally summoned in to Dr M's office.

He acted delighted to see me. Apparently I haven't actually seen the head honcho since 2004. He remembered me fondly. And vice versa. He's a cheerful, professional doc you can trust and also have a laugh with. He remembers me pre-M.E. diagnosis in 2006, but unlike his colleague, Dr V, he knows my GP and knows from my history that I have M.E. now complicating my Type 1 so didn't ask "Why do you use a stick?" or wonder if it was diabetic neuropathy-related.


Yesterday, for once, there was no pricking-your-feet-to-make-sure-you-can-still-feel-them or inspecting the bruised and atrophied lumpy injection sites. No stripping at all, yesterday.


It was almost a full pat-on-the-head, the lass done good day, this time, to my immense relief.


Last September, last check-up, my HbA1c result (the "lie detector" actual three month snapshot of average blood glucose control) was a perfect 6.9%.


Yesterday it was an even more delightful 6.1%, a drop of .8, which had us both beaming. I'd felt that I'm probably not quite so exact now with all the carb measuring and lo-carbing as I was then, so I certainly must be getting it. 


"You certainly HAVE cracked it," smiled Doc M.

From other things he confided, I guess I'm in a minority of those who take carb counting principles seriously on board and make them work for their diabetes. It has so transformed my diabetic control, I'm quite evangelical about it still. I know others don't find it so helpful, and the take-up for the carb counting courses and D.A.F.N.E. training, by the way Dr M spoke, seems to be very low still. Sadly. I wonder how long the Diabetic Education and Resource Centre will last in the current economic cuts?


He wants to check me in another 6 months for liver function, as this can be damaged over time by the Ibuprofen I am regularly forced to take to combat nerve and muscle pain from the M.E. Not that they really help, and not that I have ever once taken any tablet more than I feel is absolutely vital.

I confessed I had even discontinued the lunchtime Metformin dose as I'm hypo so often. Taking less insulin, while keeping it enough to cover my needs, when my sugars suddenly take on a life of their own when I'm ME crashed or sick, is always a challenge.

The frequent hypos they have tried every which way to tackle, remain. The hypo warning symptoms they struggled for over a year of experimenting to give me back, are still stubbornly absent, until I fall as low as 1.9!  Most folk, as Dr M admitted, would have been comatose before they got to that figure, or rushed off to A&E under a blanket with a glucose drip in their arm.

My retinal screening improvements delighted Dr M. If it wasn't now for the M.E., I'm a model Type 1 in many ways. A success story for the department, as they are for me, after so many idiotic diabetic clinics over the 27 years since my pancreas turned up its toes. The M.E., however, can still demolish my best efforts at good diabetic control in a second. For hours. Or days. Or months at a time.

The only cloud on the horizon, albeit a predictable one, is my cholesterol. It had been perfect all the years I was taking Simvastatin. But the same drug, as for so many others, particularly M.E. patients, seemed a suspect in so many of my side effects that, on the advice of a nurse and Dr H, I tried to go without it. It's a few months now that I've not been taking my statins. No surprise, then, that my cholesterol had climbed unchecked above the acceptable 4 into the 6 range again.


Dr M empathises, and isn't sure how it'll work, but is now trying me on the lowest dose (10mg) of Atorvastatin (Lipitor). We'll see how it goes. If that doesn't work, we'll need to think again whether the cholesterol is such an issue, balanced against the M.E. side-effects. As ever, I'm totally willing to try anything. What doesn't kill you, makes you stronger, if only in depth of experience!

Blood-y marvellous!

Just read an interesting post on another excellent blog here:


niceguidelines.blog


There is a new article which claims that 4.5% of those diagnosed with M.E./CFS have developed the disease after receiving a blood transfusion.


This adds to the debate surrounding the blood ban imposed on us in the past year in the UK.
Those of us officially diagnosed with M.E. can no longer give blood. Now this new study indicates that whatever organism/virus causes or triggers M.E. symptoms, may have its origins in the blood.


This doesn't take us much further down the route to a cure or treatment, sadly. 4.5% hardly sounds like a significant proportion.


I was one of those who have had many potential "trigger" events along the way i.e. shingles (herpes zoster virus), giardiasis, as well as several years of being severely crashed after the annual flu jab recommended for me as a Type 1 diabetic. The truth is out there. Somewhere. Medical science will one day hold the answers.


A little crashed at the mo after cutting a couple of twigs in the garden. The bushes have infinitely more energy than my immuno-compromised little body. Even with all my stubborn fightback impulses that refuse to be infinitely kept under by this darned disease!


Tomorrow is diabetic clinic. The moment of truth when I discover if I'm going to be taken to task for discontinuing my statins. Will my cholesterol be raised beyond reason without them? One diabetes specialist nurse and even the last diabetes consultant I saw 6 months ago suggested I try to come off them to see whether my M.E. muscle/nerve agonies and weakness improved without the statins notorious influence. Let's see which way the old swings and roundabouts go this time. Watch this shaky space!