The dreaded DWP phonecall - but all is calm, all is bright (for now!)

It seems a crazy and contradictory situation to be thankful for being told you are "unfit for work". Does that make someone a scrounger or a conscientious realist? I hope you can understand my gratitude that for now, while I am too ill to leave bed or house some days, this is the best outcome for me for the time being.

An older gentleman from the DWP rang me this morning at 9.48am. I thought he was about to tell me I was being called in for a Work Capability Assessment (the much-criticised and humiliating DWP medical) carried out by ATOS.

On the contrary, he was very gentle and full of reassurance. Nothing to worry about, it was a "courtesy call" to tell me the outcome of my filling in the ESA50 last month. Because this is just a couple of days before the post shuts down over Christmas, he wanted me to know the outcome, just in case the official letter doesn't reach me in the next few days. He hopes it will come tomorrow, but can't be sure with the Christmas rush.

He explained that my migration from Invalidity Benefit (IB) to the new equivalent Employment and Support Allowance (ESA) has been successful. He also stated that I should not be contacted again for WCA for 18 months. The change over should happen about January 17th, and the rate will remain the same. I asked whether this meant Support Group (SG) or Work Related Activity Group (WRAG) and he said the latter, which is right, and what I had hoped.

This usually entails 6 Work Focused Interviews (WFI) with a personal adviser. These cover matters like dealing with your illness, acquiring skills, voluntary work etc that may help prepare for a future return to work. Basically, tackling any barriers that need to be overcome in order to return to employment. The sort of things always uppermost in my plans and the focus of my efforts even on my very worst days. (Also a more structured equivalent of the work related interviews I had in 2008 with a personal adviser at the local JCP in the weeks after my original claim once SSP had run out).

I will need to be careful to try and be well enough to attend these WFIs when called, as this is part of the contract, even though at the moment (until and if the hotly contested 1-year time limit on contributions-based ESA comes in through the Welfare Reform Bill in April 2012) there is no sanction if you cannot find a job by the end of the 6 WFIs. That is tomorrow's worry, even if it remains today's fight on behalf of all those who have not been fortunate enough to have been placed in the correct group. Please don't think this post is smug or triumphalist. I feel for everyone who has fallen foul of the deeply flawed system through no fault of their own.

Figures I have seen claim that, of those who apply for ESA:
6% - Support Group
16% - Work Related Activity Group
 36% -claim withdrawn
3% -  claims in progress
39% - "fit for work"

Sorry if these aren't the latest statistics. I've seen various figures quoted and am now so brain-fogged, I can't sift them for the most recent! This info is taken from here

Point I'm trying to make is I feel very fortunate I have been put in the WRAG, at least, just from medical information without the full ATOS medical. Perhaps they looked back at the one I had in 2008 and saw from my records that my illnesses (Type 1 diabetes, no hypo symptoms & M.E.) have not improved, and have in some ways deteriorated.

I would be interested to see the ESA85 medical report from which such a decision was taken, but won't do this with any intention to appeal. The support group is limited to very specific cases, and if the time comes when I fit those criteria, it will no doubt be apparent to those putting me through the various work-related hoops!

More determined than ever to keep trying to raise awareness and fight for the many people in dire need who have been cut adrift. When I was fit to work in years past, I always tried to be compassionate to those who were hardest hit in society. I won't be stopping now. Though at the moment, I must leave the blazing ferocity of the laptop screen and rest in a darkened room! Certain nightmares have been put on hold, for now. If I was any more thankful and grateful, my heart might well explode!

Know when enough's enough!

I'm so sorry I'm not really up to blogging much on this today but I really want to share this excellent M.E. article from Margaret Williams which you can read here:

Margaret Williams's article "Professor Wessely over a Barrel?"

The article says it all, really.


Sorry I'm struggling to process info today. Last night I lost two hours of my life from my memory when I had the worst hypo I have had in 27 years of Type 1 Diabetes. Believe me, I've had many many hypos over the years, with little or no warning symptoms from the start.

I had just eaten part of a substantial amount of carbs in an Indian meal, with some poppadom, naan bread, onion bhaji and prawn korma with my mum who is with me as usual for the weekend. Normally, a meal like that would mean high blood sugars, without extra insulin. My sugar was 5.8 before tea. Perfect. I had the normal amount of Novorapid for the carbs I could count, but aware of the fat content which might alter the absorbtion rate, I was prepared to test my blood glucose shortly after tea to see if I needed to adjust anything to maintain good control. Usual stuff.

After tea, I felt exhausted. Singing a little meant I had to close my eyes to concentrate to remember the words and co-ordinate. My chest and throat soon made me stop. Usual M.E. frustrations. A little later, very unsteady and drained/pained, but putting it  down to M.E., I remember beginning to show my Mum a favourite music video on my laptop. I don't remember it ending.

I do recall the last thing I wanted to say, but couldn't quite manage without giggling (typical of me, hypo or not!) about something one of the band was wearing. I leaned against my mum several times, helpless with laughter, to say the joke in her ear. She ended up letting me lay down on the settee while she moved to a nearby chair. She left the room to go upstairs. I apparently had got up (I don't remember) meanwhile, and passed her crawling up the stairs on my way to lie on the bed. Not unusual with M.E. I'd need to rest after various little things achieved in the day anyway, and to digest even that modest meal.

Of the next two hours I have hardly any recall. This was about 8pm. I spoke to reassure my Mum apparently, but don't remember any of this. The next two hours were spent in locked agony for me. Sweating, in pain, disorientated. Everything like a weird waking dream. Things in the room unfamiliar and nightmarish.

My Mum let me rest (neither of us had any reason to suspect a hypo straight after a carb heavy meal like that which I've eaten before with rather the opposite effect of high blood sugars!) until 9pm. When she came to check on me, I was sitting awkwardly on the edge of the bed, with a nail file in my hand and my left contact lens on the end of my middle finger. How I took it out without losing it is one of the mysteries and things to be thankful for about this episode!

My Mum could get no sense out of me (no change there then, some would say!) but she could guess by then from my floppy incoherence that I must be hypo. As I was conscious, she attempted to get some nearby Jelly Babies (I always keep boxes of them close at hand wherever I am) into me. I apparently knocked the unfortunate Jelly Baby out of her hand and tried to punch her hand away.

Many diabetics will recognise this resistance to taking sugar when the brain is shutting down onto automatic pilot. Believe us, it's not a "silly" choice or stubbornness, just an inevitable side-effect of low blood sugar. We have no choice. I don't even remember. I kept lurching the contact lens at her, unable to form words, but groaning out quite aggressively. (One of the few times you'll see any fighting talk from me towards others, no doubt!) Lucky my Mum is so wise and understanding!

She scooped my legs back into bed, making me chew several of the soft, easily digested sweets that have so often rescued me. I became amenable enough though still remember nothing but my own inner nightmare vision of all this! She prized the file out of my hand (I have no idea why I needed it, at all!) and managed to get my lens safely into its case.

When she returned at ten, I was slowly coming back to reality. I had begun to make sense of the shapes in the bedroom, and the slow realisation that this was real, not a feverish dream. I pulled at my soaked hair and realised it was indeed attached to my head. But why was my Blood Glucose Tester upstairs when I had left it downstairs, surely? Why was my contact lens case on the bedside chair and why was I all but blind in one eye?

I had no idea what day it was, or what time.

When my mum came in, she explained, and helped me ascertain which lens was still in, so I could take it safely out and put my glasses on so I could see again. I tested my blood and it was still 2.0, after all the sugar, but I was coming back from the brink. I can register a blood sugar of 1.9 with no obvious symptoms at other times, contrary to all the official line on warning signs. I wonder if one day, what I once read about M.E. contributing to unexplained sudden hypoglycaemic attacks will finally make sense of all this?

I am crashed today, but my sugars are now at last down from double figures, where they soared due to much needed sugary compensation. You'll not question again why I choose not to drive!

My Mum has helped me to put back together my fragmentary, nightmarish memories of those lost two hours, and as usual, we can laugh about it now. But this one goes down in my diabetic history as a biggy. Still never bothered a paramedic, though. I hope I never will!

Every picture hides a story

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

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

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

I've a dustpan. Too flimsy and small. 

I've a spade, too heavy and flat.

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


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


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

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


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


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


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


Every picture tells a story.

Every picture hides a story too.

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

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

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


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

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

Giardiasis link to ME/CFS? My Bolivian souvenir

Giardia Lamblia - the little protozoa who took up residence in my gut c1991

 In 1991 I relocated to Bolivia, South America. I lived and worked there for the next two years without returning to the UK until my first furlough in late 1992, after which I did not go back.


During my time there, I contracted giardiasis, and was treated in the Methodist Hospital in La Paz. American missionary doctors prescribed the standard drug to treat Giardia Lamblia, Metronidazole. 

After the short, sharp earlier stage of this intestinal disease, I found it all but impossible to return to normal functioning. I lost weight. I lost energy. I became weak. I lost my appetite. My limbs and muscles became sore and painful. I had severe headaches. I had trouble sleeping. I had a constant feeling of deep, draining fatigue. The sensation I call "walking uphill through treacle". My ears sang. My eyes found it hard to bear the light.

 This went on and on. I stayed for a prolonged period recuperating with another missionary couple in La Paz, in a spare room, away from the bustle of city life. I did not improve much, or quickly.

 In time, faced with an ultimatum from the church headquarters back home that unless I could return to my post in Sucre, a plane ride away, they would have no alternative for the sake of my own health (considering my diabetes, too, as I was unable to eat healthily by this point) but to bring me back to England, I made the excruciating journey back to Sucre.

Sucre, "La Ciudad Blanca", "The White City", where I was director of the Internado Metodista

I was little better there. Fortunately (or not!), several of the students in the Internado Metodista where I was director for the church, were studying medicine or nursing at the University of Chuquisaca in the city. There were no shortage of girls willing to try out their medical skills on this captive, weakened gringo!

I have photos of me lying in my bed at the Internado, wired up to a saline drip which was taped precariously to the wall while the med student inmates tried to help me recover and keep me hydrated. I felt like I was running a temperature much of the time, even though the climate in Sucre is pleasantly temperate, free from the extremes of La Paz and at a lower altitude.

La Paz, highest capital in the world, on the Andean Altiplano overlooked by Mount Illimani

 I did complete my time there, but my health has never fully returned. All the symptoms from that time, from the IBS-like swings into diarrhoea and constipation, to the worst ravages of profound disabling fatigue, muscle and nerve pain, cognitive dysfunction, sleep disruption, new sensitivities to pollen, alcohol and strawberries etc have dogged me on and off, by boom and bust ever since.

I don't recall the giardia protozoa having such a friendly face!

 I recovered for periods enough to count myself well, and I rejoice to remember those times when I was strong enough to travel around talking about my time in Bolivia, to train as a minister in the Methodist Church and work with churches in Southampton and latterly, Rotherham.


But things were never quite right. Three bouts of shingles in my head that left me unable to work for weeks that ran into months. Then the gradual worsening of symptoms each autumn when, on diabetic advice, I would obediently undergo the annual flu jab, meant to save me from rogue virus attack! Every time worse. Then that final collapse after the flu jab in 2005 that brought me to where I am now. Always the mystifying panoply of disabling symptoms that nobody could explain or alleviate.

I had read before in articles discussing M.E./CFS that giardia is one of the conditions implicated as a trigger.


Here today, we have this thorough study from Norway, that shows nearly half of Giardia patients report IBS and chronic fatigue symptoms three years later. Some even after 8 years.

Giardia - not my favourite parasite. Could it have triggered my M.E.?

I had to have a stool sample analysed on my return from South America in the early 90s to establish that the giardia lamblia was not nesting smugly in some coil of my ravaged colon, and I was eventually given the all clear. I was glad to hear those voracious troublesome little protozoa had taken leave of my gut.


I wonder if one day, I'll find the bunting and party-poppers actually came out too soon on that score?

Giardia - the guilty party?

 But if giardia is to blame, then I have hope that further studies may unlock a cure for me, and set me free at last.
  
Norwegian Study into Giardiasis link to IBS & Chronic Fatigue

Fair Warning: Coping With Unexpected Visitors

I really appreciate all my lovely friends and followers online, who make every day brighter with communication that can be paced as needed, since most of us really understand M.E. and are in a similar boat.

Real friends love us for who we really are

I really appreciate other IRL (In Real Life) friends and people, too. The closest of these usually understand that ideally I need fair warning of visits, calls, etc so I can save up some "spoonie" energy to make the most of them, if at all possible.


Not everyone does make allowances, of course.  It's so difficult for the energy-rich to get their heads round the idea of "pacing". Heaven knows, it's hard enough for us to get our heads round, isn't it? Newly diagnosed or old soldiers in the field of M.E. or other challenging illnesses alike, we can find this "pacing" lark a stumbling block when faced with chaotic old "real life". (My spellchecking just discovered that I'd originally typed "fiend of M.E." instead of "field" there - a Freudian slip, eh, guys?)

Eaten by the monster of M.E.?

I can't blame friends who want to do things with me "on spec". I don't blame them. How could I? I love them and would never want to snub or hurt them! They make life worth living, even at the toughest times when I can't see them at all.

Friends - something to celebrate and treasure! But that does mean energy outlay!

When they see me, it's because I'm strong enough to see them. I guess it's harder for them to picture me after they've gone, or I'm back indoors etc, exhausted and nigh-on catatonic with post-exertional malaise and sickening pain and nausea.

They're off again, by then, getting on with their own busy lives, unaware what it's cost me to spend some time being "my old normal self" for a bit! I would rather it was this way round than them never coming or contacting or doing something off the cuff for fear of making me ill! That wouldn't be living at all, like times when I'm housebound altogether through illness. 

Real life doesn't always support "pacing". It's full of spontaneity and serendipity. Just like me at my best!

A mate of my Mum's gave a sticker to all the lasses in their little prayer and fellowship group that I'm sometimes physically a part of, when I'm well enough to make the two bus journeys that lie between our villages. It's one of those yellow stickers sponsored by the South Yorkshire Police (and no doubt other forces round the country) that warns door-knockers:

"DOORSTOPPERS: SAY NO TO DOORSTEP CALLERS.
We will NOT buy at this doorstep from doorstep callers...
...if you don't have an appointment THEN DON'T BOTHER KNOCKING"

I'd had it stuck on the door less than a day when two separate doorstep hawkers knocked as usual. Nobody reads it. I still struggle to the door if I can (usually if I ignore it it'll turn out to be a colleague or friend, by sod's law, a bit like phone calls!)


Being an accommodating sunny soul, I usually find myself having the conversation about unwanted double glazing or the unwelcome switch of utility company anyway, when I'm well enough to stand and talk at the same time. The only time I respectfully pointed out the yellow notice, the young guy outside in the rain looked so crushed, it was me who felt bad for hours after! 

It's afterwards, frazzled and slumped that I'll passive-aggressively remember why many would just have grumpily gesticulated at the notice and slammed the door. (If you knew me in real life, you'd realise that is just NEVER going to happen!). So I end up looking like this instead:

The only folks who seem to read the warning are visiting friends or colleagues from church who laugh and say, as I let them in:


"Hahaha - should I go away again? I haven't got an appointment!"


I guess the hint's never taken by the people who actually DO rob and bankrupt energy like a vacuum sucking up crumbs! This notice says nothing about illness on it, of course. Maybe there are so many stickers about from "Beware of the Dog" to "Wet Paint" that door-to-door workers simply filter them all out?

OK. Maybe not...

I'd rather NOT put anything about my illness on the outside of my house, apart from 'M.E. Awareness' posters that don't identify me as an M.E. sufferer. Believe me, that's not because I'm ashamed. Simply because I don't want to make myself more vulnerable to opportunists. 

Well, this morning's energy is already accounted for in blogging (and all the checking, rechecking, blurred vision, rests, false starts, rechecking, rechecking, correcting, losing it all by accident etc that entails!). I had to save a thimbleful of energy "spoons" today, as it's Thursday, to put out the recycling bin. Then the box. Then the bag for newspapers. Not all at once! Mercifully I don't have much in any of them this week. But summer's going fast, and I can't afford not to have the green bin emptied, ready for any moment between raindrops when my Mum can help with the mowing and I happen to have the strength to dead-head a rose!

Somebody else with the same idea!

So that's me spent for now. People think my doorbell is disconnected as a joke. As if! We need to keep our energy recycled too!


Fair warning. Can't say fairer than that?

 Please can I recycle my energy and cells while we're at it?

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!

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.

"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!