Clockwork no batteries

Got my Cardiology appointments through the post this morning:

Echocardiogram (Cardiac Ultrasound) at 9.20am Monday 14th November. Poss 30 minutes @ Cardiology Suite, Level A.


48-Hour Monitor (Holter tape) 10.00am Monday 14th November. Poss 30 minutes - technician to apply electrodes/wires.


Requested to return so recorder can be removed 48 hours later. 


That should be the morning of Wednesday 16th November. Which just happens to be the same day as a longer standing appointment for my yearly diabetic eye screening. That's scheduled for 2.30pm (eye tests) for 3pm (appointment with ophthalmologist).


Looks like a daunting amount of exhausting stuff in a two day period, with little chance for pacing along the way. At the same time, I'm looking at it as a saving of spoons on the Wednesday. It means only one bus journey there and back to hospital, if I can co-ordinate the third floor cardio visit to be just before the ground floor opthalmology. It also means my poor long-suffering mum will only have to be shuttling back and forth on various unreliable buses to support and accompany me on the two days instead of three or four that week! 

Maybe I can find somewhere to rest in between? Maybe not - it IS a hospital after all! Lights are sickeningly bright and recent "improvements" have reduced comfy seating in some waiting areas and presented us with "convenient" touch screens to book yourself in etc that mean even more stress, co-ordination and balancing than before. 

Not sure any of the specialists I'll be seeing that week understand M.E. really; they count me as a diabetic on these occasions, and you're only allowed to be looked at as one illness at a time, in my long experience! They do their best. So shall I!


Last few weeks have hardly slept until after 5am. Alternately shivery and soaked in perspiration. Chest and arms, neck and legs hurting so much and hands all pins and needles in mornings. When I do walk, its noticeably slower that ever, like when I was first up from completely bedbound.

 
 Blood sugar in double figures much of time this last week, as if fighting virus. Some sneezing, but not much. Neck glands sore, voice very weak and tiring/painful in chest muscles to speak. Making so many mistakes when writing longhand, forgetting things, words especially when speaking.

Last weekend saw second massive unannounced hypo of the month that took me completely out. Something is changing in my hypo patterns and awareness during the hypo itself, like being awake in a nightmare, losing whole segments of consciousness while not appearing comatose to others. Possibly now I've turned 50 the oestrogen isn't oiling the wheels any more. Or more likely my liver just has no more glucagon to "dump" when my BG plummets without as much as a "here we go!"

Updates to follow, but right now, please excuse me as I get properly horizontal again in a darkened room!

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.

There is a light and it never goes out!

Back from Cardiology this afternoon.


Good news - I have a heart!
Better news - it's still beating!
Best news - first ECG came up normal, as did my BP, (so it should, controlled by ACE inhibitors).


Consultant wouldn't leave it there, though. My heart's hammering above 100bpm on a regular basis and the frequent palpitations this past month are cause for further investigation.  Taking into account my 27 years on insulin with frequent sudden warning-free hypos, my family history of dad's stroke at 45, maternal Gran's death at 52 from atherosclerosis and heart failure plus plenty of valvular heart disease, angina etc thrown in for good measure, I suppose it's best checked out.


So now I'm waiting for appointments for


(a) Echocardiogram


(b) 24-hour Holter monitoring tape


and 

(c) another session with the cardio consultant before Christmas. 

In other news, we have this exciting development in M.E. research.
Time to put all the disappointment of XMRV behind us and learn to spell "rituximab". (Why does it look like something spelled backwards to my random thought processes?)

BREAKING NEWS: ‘Chronic fatigue syndrome eased by cancer drug’, New Scientist, 19 October 2011 

67% of patients in the trial saw symptoms improve.
Some later relapsed, but researchers are addressing this to see whether 'periodic doses of rituximab could permanently keep the symptoms of CFS at bay'. With an illness characterised by a relapsing-remitting pattern there's obviously going to be much more serious research needed, but it's an encouraging start. Hopefully this will open up yet more discoveries and eventually some reliable answers to free M.E. and/or CFS patients from so much suffering.


Bit brainfoggled and bamboozled now after tiring day under hospital lights and on impossibly bumpy buses, so will get head round this properly another day. Thanks to all you lovely people who were thinking of me today. As Morrissey sang, in one of his more positive moments, "There is a light and it never goes out." XXX

My heart starts missing a beat...every time

In case you think the title sounds like a spot of hypochondria, it's OK, it's just a line from "Heart" by the Pet Shop Boys!


But it does. Start missing a beat, that is.


Tonight it keeps skipping, dropping, squelching, thumping, fluttering more than ever. Not more than a couple of beats at a time, but more often than normal. My heart's been doing this through the day but this evening it's doing overtime. It happens through the night and I keep waking up, when I get to sleep for half an hour, in a sweat.

My guess, for what very little it's worth, is this may just be one of those "ectopic" heartbeat thingummies that turns out to be benign. Hoping so. 

Maybe it's debility from the M.E.? I'm certainly at a low ebb there. Diabetically my blood sugar is in the normal range while this is happening. Not having any extra caffeine in any form (reducing it in fact, to make sure it isn't that) and keeping water intake up to try and make sure I'm not just dehydrated.


Still waiting for the referral appointment at Cardiology on Thursday. All will become clear there, I reckon. My swinging brick will be put through its paces and I can stop giving concerned friends a heart attack worrying about me!

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

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

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

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

Wait a minute, Mr Postman!

I got back yesterday from my 50th birthday weekend spent at my Mum's in a nearby village.


The two bus journeys back, even though simple and with almost no walking in between, have wiped me out. Much of the weekend itself was spent asleep or horizontal. My palpitations (after the recent massive diabetic hypo), nausea, pain and dizziness have been very much part of the celebratory weekend. 


Thankfully, I managed to rest up enough to do what I'd promised at Mum's local church on Sunday. It's a small congregation who have known me since I was a child. They're too kind to spot mistakes I know I made, or judge me for having to slump in the chair at times instead of standing in the pulpit non-stop. 

I had to lie down and sleep at a friend's before the lunch she'd invited us to share afterwards. Words didn't come so easily when I didn't have them painstakingly prepared and written down in front of me. Small talk can be such a big deal with M.E., can't it? I felt like I'd got both eyes in the same socket after a few hours. I still count my blessings at what I can manage, compared to me at my very worst with M.E. though. 

Coming back through my own front door yesterday, I found myself paddling through a mountain of mail. Much was the usual junk. Some was belated birthday cards. One was the dreaded brown window envelope so many of us have been waiting for so long. D.W.P.'s return address in Belfast was printed on the reverse, and these were the first words my eyes picked out in the whole untidy pile. I opened it before I even took my coat off. Better to know than yet another day wondering.

It was good old IBM01, all four "helpful" pages, telling me about the changeover from Incapacity Benefit/Severe Disablement Allowance/Income Support to Employment & Support Allowance. Explaining that as "customers" (don't you love that meaningless, patronising term in the circumstances?) "will be considered and assessed for Employment and Support Allowance between 2010 and 2014", "We are writing to you because you are affected now".

They check they have the right contact phone number and promise to phone some time in the two weeks following date of posting (8th October). It's almost exactly three years since my last DWP medical assessment which I passed. Although I face the same health problems most days as I did back then, plus some extras, I fully expect to be disallowed this time. We all know it's no longer about disability. It's a cost-cutting exercise in which nothing and nobody is treated with medical insight or even the wisdom of common sense.


So now the sickening wait for the first brown envelope to fall is over. Now I'm waiting for my mobile to ring so they can confirm my identity, and begin to find reasons they can brand me a workshy scrounger. I don't recall being that cynical the last time I was assessed. I had no reason to. 

After that, I'll be sent the chunky health questionnaire, "Limited Capability for Work", struggle my way through that, then wait to be called to the WCA (Work Capability Assessment) and then the sword of Damocles will fall. I don't know whether I would have the strength to grind myself down and waste my last few "spoons" in an appeal. Another visit from the church next week to see if, one way or another, there is something I can do with the little sporadic health I have. That will be a lifeline, not least if the little I have to live on is snatched away.


I recently read a shocking story that these forms are first opened by postal staff! I can't even decide whether to mention this to the person who rings me. Or will that cross me off from credibility right away? Que sera sera. I just pray I have the strength to stay positive and gracious now this terrifying ordeal is beginning at last. It can never be quite as trying, draining and humiliating as living with chronic illnesses is, now, can it? Or can it?

I have to stay strong, so in future I can still be some use or encouragement to others faced with this disease. We can do this, but not alone!


In other news: tomorrow I see my GP for the first time in a while, about the recent hypo leaving me further weakened by palpitations, just to check my heart is behaving itself.


In the best news of all: my 50th birthday fundraiser for Invest in M.E. has already made over £800 for the charity, smashing my £500 target with an amazing 161% of total! Further donations are still being promised, and my page is still open for donations till 31st October at the end of the month! 


Joyce's 50th Birthday Gift For Invest in M.E. 

A HUGE thank you to everybody who has given whatever they can to make my birthday wish come true! You are potentially helping all those with M.E. to have the chance of a brighter future! Bless you! Please know what a difference we can make together. We need each other more than ever in these difficult times XXX

Countdown to the big "L" - Invest in M.E. with me to celebrate!

L = 50 in roman numerals.


Today's my last day of being in my "life begins at 40"s.

Looking forward to enjoying some of my favourite "L" things:

Love!

Laughter!

Luvverly people!

Loopiness!

Lingering autumnal smells!

Lustrous autumn colours!

Life-enhancing memories! 

Lockhouses, lighthouses and lots more family history!

Looking through binoculars at my beloved wild birds!

Re-Laxing! (Well, that one was close! Cut me some s-Lack!)

Listening to TMBG, REM, Sparks & other of my favourite music! (John Linnell counts towards the "L" pleasures, too)!

Learning how SWFC have done in the footie! (Maybe not!)

Lying down to recover from frantically enjoying all the above!

Lots of other stuff that doesn't begin with an "L" but I love it anyway!

In spite of M.E. trying its hardest to chip away the will to live for the last couple of decades, it still hasn't managed that, and never will!


Here's to tomorrow! (No big parties or outings this year - just a couple of understanding, loving friends around for a while and then to my Mum's for the weekend & some more fellowshipping - and fellow-ess-shipping!). Here's to the next half century!

Thanks a million to everybody who has already sent me love for my birthday tomorrow, and a special hug to all who have already donated to my charity choice,  Invest in M.E.


If you'd like to celebrate my big half century birthday with me by donating towards the future of all M.E. patients, to fund research, real effective treatments and the hope of a cure, please visit my page:


Joyce's 50th Birthday Gift for M.E.


Even if you can't donate, please just take a look and maybe encourage others to learn a little more about M.E. Together we can bust those myths, push forward the boundaries, lay the trail into a brighter future for everybody!


Love and blessings XXXXX

Angel in Disguise?

Not the best of days, health-wise, but who's counting?


Still very weak, feverish, sick, sore and with added palpitations since the massive hypoglycemic episode I reported  a few weeks ago, plus my immune system going  ape after the flu jab. Bad news everywhere, politicians carving up our lives, press gloomily gloating, crises and uncertainties in research have got the worldwide M.E. community punch-drunk this week.


Angels have the habit of slipping in when you're looking the other way, though, don't they? Had a visit, very rare and very welcome, from my Methodist superintendent minister, my colleague when I was still able to work full time. Since my collapse six years ago, I've been a junior supernumerary minister, an uncomfortable anomaly for those not yet retirement age, too ill to work as a full-time itinerant minister working 24/7, or to work reliably at all.
He had come with no agenda. Just a pastoral visit to a colleague as he is now beginning his time as head of the circuit ministerial team. I had no expectations but a chat with an old friend. He listened and learned about M.E. like very few do. We laughed together, as always. He was patient with my brain fog and spoke clearly and slowly enough for my addled M.E. brain to take in. Almost - some names and proper nouns still elude me!

Then he talked about the new more flexible working patterns and new emphases in ministry that the church is being challenged to embrace. Much has changed in the years I have been forced out of the calling I so love. He talked of how many missed my ministry.

He spoke of lakes and rivers. Deep still places and streams that flow faster between them, sharing the same water, functioning differently, yet as one. He gave me hope that, even so limited as my strength, energy and cognitive function is, there may in future be a place for me to offer more than the occasional service. 

He knows all my limitations. He knows I will never be fit to drive with my lack of hypo awareness and frequent blood glucose dips. He knows I can't do things to a deadline any more. He knows he may possibly lose me from the working sphere for days, weeks or months at a stretch. He knows work needs to be something I can do at my own pace and completed when I am well enough.

 He talked of things that could be done over the internet, using all my skills. Things that could happen from home, or within a very short distance in supportive surroundings. He talked of one to one jobs where I could sit or lie, not needing more than a whisper, just using the pastoral, people and teaching skills I was born with and trained for. 

 He helped me glimpse places my ministry could slot in again within new and established outreaches and communities. He saw me as I really am, who I need to be. Ministry isn't a job or a 9-5 profession. It's open ended and often all-consuming. It's a calling and a longing and your whole identity that can't be put on a shelf somewhere when your body gets in the way. With all these frustrations, limitations and agonies of M.E., he could still see where I could be me, with much to offer.


It won't be easy. It might not happen quickly. There are no guarantees. God never called me to being sure, only to being faithful and open. There are still many obstacles to overcome. Things to think through, pray through. People who also need to be brought into the circle of understanding so we can all support each other with our own unique strengths. This may be the beginning of a journey with precious few signposts or maps.

I can't tell you how good this feels. After so long in the nightmare wilderness, in the church's vision I glimpsed a possible model for how other jobs and businesses could try to make this support, adaptation and flexibility work for all those with severe life-limiting illnesses and very special challenges to tackle.

What I've gone through healthwise all my adult life, and even before that in my father's stroke at 45, places me in a uniquly blessed position to be part of the solution for others, or at least compassionate to hear what they are saying, or not able easily to express.

Only time will tell, but that my "company" is beginning  to even contemplate what it means to enable its broken children to ease into making their unique contribution again, while remaining less than wholly able, is a miracle almost too amazing and beautiful to take in.


Half way through his visit, my toilet cistern outlet exploded noisily, drowning our conversation, pouring a flood of water onto the tiles. It had been overflowing in drips for some weeks, but today it came to a head. And he fixed it! Right place, right time, or the whisper of a loving provision?

My colleague knows he can't "fix" me. But he is open to finding the round hole instead of the square one, into which this round peg can somehow, day by fluctuating day, gradually fit herself again.


Till then, my body is sick, my head is throbbing, but my heart and my spirit is singing!

Hope is the Thing with Feathers

 News is breaking here from Dr Jamie Deckoff-Jones MD, that the Nevada based WPI (Whittemore Peterson Institute) research program has been closed by the institute's CEO, and the facility is now locked down. It's former principle investigator, Dr. Judy Mikovits, is in discussions concerning other institutions to which she may move to continue her grant-funded research.

The whole worldwide community of M.E. patients and carers is at a loss what to think. Where does this leave us? What should we believe? Where should we put our efforts now?


Much of hope, spoons and support has been invested by so many.

Emily Dickinson's poem springs to mind:

Hope

Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the words,
And never stops at all,

And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.

I've heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.

Hope feels fragile at trying times. It can get very buffeted about when devastating, disorientating news like this breaks on which much is pinned. But the wordless tune has to carry us through towards a future where the truth will certainly finally be known.

As with other diseases, MS, AIDS/HIV, TB, the path to understanding and treatment doesn't always go smoothly or quickly. But I'm hanging in there with gratitude for all who have done their bit towards pushing forward that cutting edge of research and advocacy. You are all heroes and flame-fanners to me!

In a week when I am asking friends, relations and well-wishers to donate to Invest in ME for my 50th birthday here: Joyce's 50th birthday gift for M.E. (already over half way to target, and only a couple of unhelpful psych nay-sayers coming out the woodwork so far!) Invest in M.E has made clear it is independent of the meltdown that seems to be engulfing its US counterpart. Its statement is here and makes its own position clear. I also hope all research may quickly get back on course following whatever derails it. Lives depend on it.

Please let's never give up hope. Let's gently pull together and keep each other hoping and laughing through the gloom and disappointments. We'll always have each other and good people with integrity fighting on our side. I truly believe tomorrow is in safe hands, in spite of every setback.


No word yet on the main Whittemore Peterson Institute website.

No word yet where Dr Judy Mikovits will be continuing her funded research into the retroviruses that are so heavily implicated in the etiology of M.E.

No word at all in the media, as of 3pm, Monday October 3rd 2011 in the UK.

Nothing but disconsolate tweets on Twitter and the social media.

But that "thing with feathers" will one day have a joyful tweet to twitter about the truth, causes and cure of these diseases that are our constant companions today.
Hanging onto that hope with both hands through this "chillest land" and "strangest sea" till tomorrow dawns!

...............................................................................................
First official news I have seen at 8.30 pm UK time: not adding much to what was understood earlier in the day:
Wall Street Journal Health Blog 3rd October 2011

Finally, at 10pm UK time, a statement from the WPI itself.

Jabsolutey not fabulous!

Still struggling with fluttery heart and attendant nausea, dizzy spells etc on top of all usual stuff after lengthy hypo week last Saturday.


Could only walk very short distances, very very slowly at weekend. Mum actually said she'd not known me so slow for as long as she could remember. She has just gone to make appointment with my GP to check out that all OK in cardiac department as she puts my prescription in.

Had flu jab on Saturday morning. One of the male GPs at practice, giving the jab, listened empathetically to my usual "Diabetic - yes, M.E.- possibly no" dilemma. He obviously saw the possible past problems with the flu jab in my case as signs of a weakened immune system. He took M.E seriously, even if he had no answers. He seemed interested in my 50th birthday invitation to raise funds for bio-medical research so we'll one day have the answers. Had the jab anyway, but he was supportive and understanding, which I always take as a sign of progress and hope.

Absolutely flattened now. Heart thumps and flutters seem worse in evening and when rising from sitting/lying, but other times too, more regularly than in recent past. Not anxious, so no reason this symptom should have suddenly become pronounced. Palpitations can be harmless or a signal of something else. It's not pain, rather a feeling of a change of beat or butterfly breath (if butterflies had breath!) just to the right centre of my chest. Sometimes 7-8 times in an hour, maybe, other times less frequently and hours when not noticed at all. That's when I'm actually asleep, I guess!

 No doubt it won't show up on a stethoscope during a five minute appointment. At least I will have checked, for well-wishers' and loved ones' sakes, if nothing else.


Everything feels swollen. Sore throat. Can't think of words. Can't remember stuff that's obvious. Blood sugars through roof much of time since jab. Burning hot patches in limbs, organs, torso. Left eyelid swollen and eye sore. Shivery. Diarrhoea intermittently, then gone. Scalp and neck sore. Dizzy. Nauseous. No real appetite. Balance way off. (Using stick in house today). Exhausted just breathing. Feeling compulsion to lie down on floor wherever I am. Too jerky and hot to sleep through night.


Just a normal M.E. day (not) at the office, I suppose.

 Quite a few good folks and friends wanting to call by this week to mark my 50th on Friday. Then I've promised a service in the village where I was born on Sunday. I have to be well enough for that hour, plus lunch a dear old friend has offered afterwards. Need to see another friend who is terribly sick over the weekend too while I'm over there. Looks overwhelming from here at the moment, but nil desperandum!


So I'll leave it there for now and get properly horizontal again.
Look on the bright side - when you're flat you can't fall any further!