Tag Archives: Ehlers-Danlos Syndrome

Normal test results

I’m the healthiest sick person you’ll ever meet.  Despite having Spinal Stenosis, MCAD and EDS from birth, M.E., Histamine Intolerance, Endometriosis and Adenomyosis 98% of all my test results have come back “normal”, at least according to my Doctors.  It will not surprise you that my response to that is “knickers!”.

When I was 11 I was climbing in some outbuildings and fell from the first floor onto the bonnet of a car, after which I developed back pain.  For the next 5 years I went backwards and forwards to the hospital who could find no reason for my symptoms.  X-ray results were “normal” and eventually I was told I was “attention seeking” and needed to see a shrink.  I refused and demanded a second opinion from an Orthopaed at a decent hospital 90 miles away (I was bolshy even at 16 😉 ).  Within 48 hours of being admitted they discovered I had been born with rare congenital spinal stenosis and urgently needed a laminectomy.  The fall wasn’t the cause of my back issue but had just aggravated a pre-existing condition.

This was my first experience that Doctors aren’t Gods and sometimes get it wrong and over the coming years I was to discover that they get it wrong more often than any of us would like.

It’s only in the past 5 years or so that NHS patients in the UK have been given access to their test results.  Historically, GPs would take loads of blood, not even tell you what you were being tested for and the results were sent back to the GP who only ever rang you if something abnormal was discovered.  But a GP’s idea of “normal” results and my idea of “normal” results seem to differ.

As I’ve discussed recently here on my blog, at the tail end of last year I started having symptoms of anaemia so asked my GP to check my iron levels.  They came back 1 point above the very bottom rung of “normal” (normal range 17-160 according to my lab sheet, and my result was 18), so my GP considered that fine.  Only of course it wasn’t fine because I was having symptoms.  I took it upon myself to start some supplements and within a week the pallor, exhaustion and daily dizziness I’d had for months vanished.  But if hadn’t gone to the surgery to request a print-out of my results and seen that my levels were low my GP would have just said everything was “normal”, I wouldn’t have tried the supplements and would have continued to feel like death warmed up.

When I saw Dr Seneviratne for my histamine/creatinine test it was high but within the “normal” range (normal is 34-177 and mine was 140).  However I’d been on a low histamine diet for 4 months at that stage, which one would hope would lower my histamine load and therefore skew the result, plus was symptomatic (at the time of testing my bum was covered in hives).  So thankfully Dr S still diagnosed me with “probable” MCAD because my history fairly conclusively suggested it.  But not all Doctors think like that – they see “normal” test results and rely on those, even when all the evidence is pointing towards there being a problem.

I’ve had severe gynae pain since the day I started my periods and over the years have had various tests and scans all of which were “normal”.  Well, apart from the fact my first ovarian scan showed a 2cm cyst which I was told was cyclical (they know this how?!) and 12 years later my second ovarian scan showed a 5cm cyst.  Turns out I have polysystic ovaries and due to my endo some were blood filled and when they burst caused excruciating pain and adhesions :-/  My first pelvic MRI at my local hospital showed absolutely nothing untoward, yet an MRI at a specialist endo centre six months later showed extensive endometriosis which even I could see on the scan!  So it turned out that the excruciating pain I’d lived with for the better part of 40 years wasn’t “normal” after all and I needed an urgent hysterectomy.

Anyone with Hypermobile Ehlers-Danlos Syndrome will tell you how painful and disabling the condition can be, yet nothing shows up on tests.  Genes and skin are normal, as are scans and x-rays.  Before I suspected hEDS I was told by medical staff that I was just “sensitive to pain” which made me feel like a total loser – little did they know I lived with pain most days that would have a healthy person reaching for the Vicodin and I did it without so much as a murmur, so far from being sensitive to pain the opposite was, in fact, true.

Here’s the thing I wish Doctors took more on board – if a person is having symptoms there is a problem, even if test results look “normal”.  I wish they’d listen more to what we’re telling them, take a full history and trust that we know our bodies better than they do.  What is “normal” for a 6ft 4″, 16 stone, male, thirtysomething rugby player might not be “normal” for a 5Ft, 7stone, teenage girl.

Back pain at the age of 11 is not “normal”.  Gynae pain so severe you’re curled up in the foetal position every month is not “normal”.  Fainting is not “normal”.  Widespread pain is not “normal”.  Seizures are not “normal”.  Fatigue which puts you in bed by 4pm every day is not “normal”.  Collapsing after every meal is not “normal”.  Flushing is not “normal”.  Daily nausea is not “normal”.   I don’t care that all my tests indicated nothing was  wrong, because something clearly was and it wasn’t something trivial to cause that much havoc.

My cynicism towards the medical profession is now legendary – that’s what comes of being fobbed off or 40 years that all is well.  In the end, I had to guess what my diseases were and inform my Doctors, who then did the relevant tests which, surprise!, came back not normal in any way 😉  I trusted my instincts, even though when I was younger I didn’t have enough confidence to challenge my Doctors.  I know there are some people who are hyper-vigilant and obsessive and who think they have some dreaded disease from every little ache, pain and niggle (I’ve met some of them online!) but I know my personality and know that I’m not a drama queen or someone who focuses abnormally on my body (again, the opposite is true and I actually ignore symptoms when I really shouldn’t!).

These days I’ve gained a fair bit of knowledge about my body and I know what’s normal for me and what’s not.  If I’m not happy with a consultation I’ll research the best doctor to see and request a referral even if it’s hundreds of miles away (which is my legal right).  I request a copy of my test results and will push for treatment or further testing if I think it’s needed.  After all, I’m the one who has to live in my body and suffer my symptoms, not my Doctor.

 

Weekly roundup

This week was the first of my stay-cation but I’ve been so busy I think I’m going to need another holiday to get over my holiday 😉  Back pain aside, however, it’s been a fabulous few days and I’ve enjoyed every second.

On Monday a friend and I went to photograph wild Red Squirrels.   They are native to Britain but in the late 1800s North American Grey Squirrels were let loose in the UK (for reasons unknown) and over the years they have decimated the native Red Squirrel population, not least because greys carry squirrel pox to which they are immune but the reds are not.  We have one of the few remaining red populations here in Cumbria but they are very timid and shy animals and very difficult to capture on film.  But I managed it and had an enchanting hour sat by a tiny waterfall in woodland watching 3 reds foraging for food:

Thursday I had a lovely day with my best mate, having lunch out to celebrate her birthday.  I had taken a shot of a local stone circle and, having seen that on my Facebook page, my friend had asked for it to be printed off for her birthday.  I’m a shit landscape photographer so was extremely flattered that she’d liked it enough to put it on her wall.  I went the extra mile and had a custom frame made and even I admit it turned out nice.

Thursday night didn’t quite go to plan as I discussed in my last blog post, however I still made it out on Friday night to my Camera Club’s annual awards dinner.  Food was fab, company was great and I walked off with 3 trophies for winning the Summer Challenge, the Intermediate Print League and the Intermediate Digital Image League – there was much ribbing about me needing a wheelbarrow to take my haul home and an extension built on my house to put them in 😉  As a bit of fun we had to produce an image we’d taken with a caption and I also won the caption competition:

Saturday I had booked to go on a short Portrait photography workshop.  It was a stupid thing to do considering I’d been out the night before and knew I’d be absolutely knackered but there was a reason to the madness – I needed a distraction from the fact that 300 miles away 6 judges were looking at a panel of 10 of my photographs and assessing me for my first photographic distinction!  So off I toddled to the workshop along with 5 other people from my camera club.  I have to admit it wasn’t that great and made worse by being so tired and still having awful back pain, but having said all that it was interesting to be in a proper photography studio with expensive lights and stuff.  I managed to get a nice image of the model too, though it still needs some work:

After the workshop finished I tentatively checked my phone and saw I’d received a text from someone I know who was at the Distinction Panel – I held my breath as I opened it.  Hurrahhh I had passed and can now put the letters CPAGB after my name! 🙂

So, as weeks go this has been one of my best in a long time.  I’ve way over-done it and will suffer the consequences over the coming days but I don’t care!  I’ve spent time with fabulous people doing the things I love and life doesn’t get much better than that.

Expect the unexpected

Life with Ehlers-Danlos Syndrome is a daily game of Russian Roulette and you never know the day a bullet will be fired from the gun which is your body.

I’ve been chugging along for months with no major hEDS-related issues.  My ankles are stiff first thing in a morning and I walk to the bathroom like a constipated duck, my elbows give me gyp, my feet (and consequently knees and hips) are still playing me up but it’s nothing that hasn’t been there for some years now and is just my ‘normal’.

Yesterday I had a lovely afternoon out to celebrate my best friend’s birthday (more on that in my Weekly Roundup post at the weekend).  I felt totally fine (for me at any rate) and went to bed early because this evening I’m going out and I wanted to be well rested.  It’s my Camera Club’s annual awards ceremony and it is the only day of the entire year I go out for dinner.  I’ve even treated myself to a new outfit more, it has to be said, because I’ve recently gained 7lbs and my existing clothes no longer fasten on me than because I fancied a change, and I’ve even done my once yearly finger nail paint specially for the occasion.  I was hugely looking forward to my one and only night out.

I went straight to sleep and fully expected not to wake ’til 6am, but my body had other ideas.  At 1am I was pulled groggily from deep slumber and knew instinctively something was up.  I checked Bertie was OK, who blinked at me sleepily from his bed before sighing and going back to sleep, then realized my back was killing me.  WTH?!

Three or four times in the past couple of years one of my bottom ribs has subluxed (ie partially dislocated) in my sleep and I thought that had happened again, but as I sat up I realized the pain was lower down somewhere in my lumbar spine and that is was bilateral (the rib pain usually being much worse on one side).  I have no clue what I’ve done to my back and can’t believe I can go to bed without so much as a twinge and wake up 3 hours later in agony.

I’ve barely slept a wink.  I can no longer lie on my back or front due to existing back pain, and no matter which side I tried to sleep on the new pain was too much.  I tried my TENS machine, which made my head buzz making sleep impossible, so resorted to Ibuleve gel and a hot water bottle which did little to relieve my suffering (I’m allergic to most drugs, including pain killers, so medication is out of the question).

I can’t sodding believe my back chose this one day out of the year to conk on me.  What are the fucking chances of that happening?!  I’m so mad at it if it weren’t already sore I’d give a good ass whipping.  So I am now sitting in bed typing this with 4 large TENS pads on and trying to ignore the fact that it’s not even touching the sides of my pain.

The health care system here in the UK is nothing like in America.  I can’t just have an emergency physio or doctor’s appointment (it takes at least 2 weeks to see any old GP where I live and 6-8 weeks to get to see your regular GP), physio is only available by referral from your GP (there is a 2 month waiting list) and you can’t just request an x-ray or scan (again this is only done via your GP so could take 6 months, by which time one would hope one’s back would be better!).  So self-management and wondering what the hell has happened is the order of the day.

I am still going to my dinner this evening, even though I am in agony and hugely sleep deprived.  My outfit won’t look quite as nice with my TENS machine hidden underneath it and I won’t look quite so elegant on my crutches but I’m collecting my trophies come hell or high water – I can feel sorry for myself tomorrow!

Bitterness

Being chronically ill isn’t how it’s portrayed on the telly.  On the tv people get sick, lie on the couch looking fabulous (if a bit pale and wan) while their friends and family rally round bringing blankets and chicken soup, enabling them to make a complete recovery usually with the help of some miraculous new medical intervention.  There is no unwashed hair, food stained pyjamas, stench of Deep Heat, denial of their symptoms by the medical profession and their nearest and dearest don’t bugger off into the sunset to carry on their lives without them.

For me, and many of my severe and long-term ill friends, life can be a lonely, isolated, frustrating and boring existence.  Friends who kept in touch in the first couple of years have long since drifted away.  The tension of still being reliant on parents when you’re in your thirties or even forties, or having a spouse turn into a caregiver, tests even the most rock-solid of relationships.  Children grow up with a basically absentee parent.  Careers we fought so hard for vanish forever.  Finances are tight.  Holidays by the beach are a long forgotten memory as we live our lives imprisoned by the four walls of our home, each day stretching before us in pain-filled, monotonous solitude.

There is much grief in living with chronic illness.  The mourning of a life we thought would be ours.  The letting go of cherished hopes and dreams.  The realization that this is now our future and all hope of normality is gone.

I’d already had a tough child-hood.  I’d already survived years of bullying, an abusive husband and being ostracized by my paternal family.  I had just started to gain my emotional equilibrium and find happiness when M.E. hit.  It felt desperately unfair.

I clung on to the hope that I’d be better in a year or two, but as I reached the 5 year mark, then the 10 year mark, hope left the building.  15 years down the line I’d gained my EDS diagnosis.  20 years down the line and MCAD, Endometriosis, Adenomyosis and an Essential Tremor had been added to the mix.

I’m not sure whether time makes it easier, or harder, to fight off bitterness.  There are many days I wake with joy in my heart and gratitude for my life, but still those days I wake feeling angry and hard done by.  Having been given all these issues to deal with couldn’t the Universe have provided me with a little compensation?  A loving husband, my dream home, or a lottery win maybe?  Something, anything, to make up for all I’ve lost?

There are days I struggle to fight my anger. My experience has given me hard edges and made me emotionally difficult to reach.  Yes it’s provided me with other attributes – empathy and a kind heart I hope – but it’s taken far more than it’s given.

I try not to be hard on myself on those days bitterness engulfs me.  I tell myself it’s normal to feel that way now and again, just so long as it’s not all I feel.  There are no Manuals to tell us how to live a joyful and fulfilled life when so much has been taken away.  I remind myself there are people far worse off than me in the world.  That I do, in fact, have much to be thankful for.  Some days that helps.  And other days it doesn’t.

I don’t want this post to sound maudlin or depressing – I’m just being honest about the reality of living a restricted life.  We’re not Saints, we’re just human beings doing the best we can under exceptional circumstances.  It’s normal to feel frustrated, angry and bitter – the hard part is to not let that consume us.

Brain Fog

I find the problems I have with memory, thinking and cognition are the hardest to explain to healthy people.  ‘Brain fog’ is a common term used by M.E. and EDS sufferers, but to me it trivializes a very serious problem and doesn’t go anywhere near to describing my speech, language, thought and processing difficulties.

I have woken this morning with quite bad ‘brain fog’.  I feel like my body has woken up, but my head still thinks it’s 3am and is still sleeping.  It’s that muddled kind’ve a feeling when you’re in deep slumber and something suddenly wakes you – you try to focus and be alert but most of your thought processes are still in the land of nod.  It feels like you’re drugged, like someone has slipped you a couple of Valium and then asked you to do quadratic equations and is pressuring you for the answers.

My ‘brain fog’ is a physical thing culminating in a numb patch right between my eyes.  If I press there on my browbone it’s actually tender.  When I was severely affected with M.E. it also used to throb – a banging, pulsating, rhythmic pressure right between my eyes which made thought impossible.

I woke this morning and turned on the TV to watch the news.  The images hurt my eyes.  Each flash of moving picture made me motion-sick and felt like an explosion in my brain, a bit like being drunk at a disco with flashing lights.  I have to look away and wait for the ‘still’ images of the presenters to come back on.  I’m really nauseous.

I feel dizzy and disoriented.  Lights are too bright, sounds are too loud.  My brain feels hung over, but with none of the fun of the night before.

My ‘dyslexia’ (for want of a better diagnosis) is off the charts.  I’f (I’m leaving that as I’ve just typed it so you can see what I mean!) I’d left this blog post as I’d written it you woudn’t (another mis-spelling) be able to raed (and another) it.  Honest (that should be honestly) it takes me an hour to type each of my blog posts and most of that is reading and re-reading them back to correct errors (thank God for spell-checker!).

My memory is scarily bad.  If I’d taken out shares in post-it notes I’d be rich by now.  I can’t trust my brain to remember anything, so have to write everything down.  I have a personal organizer in which I write all my appointments, but then I forget to look at it – it just ceases to exist in my mind.  So every Sunday night I sit and write little cards of what I need to do each day that week, and put each day’s note on top of my mobile phone so that when I turn my phone on in a morning I see the note.  I find my memory issues cause huge frustration in other people, especially those that don’t know me well.  I’ve lost count of the times at Camera Club that someone has said “I’ve already told you that, twice!” or who look at me strangely when I ask a question and I realize I’m supposed to already know the answer but don’t.  Last year I asked one of the members “do you live in town?” and he looked at me like I’d grown two heads because I’d actually been to his house the week before to pick him up!  I do tell people I have a brain injury but because I’m not elderly and because I “look fine” they don’t seem to grasp the fact that my brain is damaged and doesn’t function normally 😦

Learning new things is tortuous.  The current trend of technology manufacturers to keep making ‘new’ and ‘improved’ versions of phones, computers and the like drives me insane.  It took me over 6 months to learn the basics of my new smart-phone and 6 months later my provider wanted me to upgrade.  No way Pedro! (apologies for the UK humour there which no-one but us Brits will get 😉 )

My sense of humour has done a bunk.  In order to be witty (and I did used to be witty) your brain has to be sharp and on the ball not drunk and disorderly and stoned on imaginary benzos.   I miss being funny – it used to be a large part of my identity and I feel boring without it.

So basically I can’t spell or do math, I can’t remember what I did 2 hours ago let alone last week, I can’t watch a film without feeling car-sick, my speech is drunk, I can’t follow conversations well, my wit has done a runner and every thought I have has to wade through a muddy swamp in order to make it to the outside world and when it finally reaches daylight it’s disoriented and a bit dishevelled.

Yet I “look fine”.  And deep inside my brain I’m still the same old me.  Still as sharp and witty and with-it as ever but I’m somehow trapped inside my skull and only a shadow of myself can escape and make a bid for freedom.  My biggest wish is that healthy people would cut me some slack.  Would realize the difficulties I face every hour of every day.  I know it’s frustrating for them but I want to shout “if it’s frustrating for you imagine what it’s like for me!”  I wish they’d stop expecting me to be ‘normal’ and stop pressuring me to be healthy because I’m not.  If I were elderly there would be a lot more understanding of my limitations but because I’m in my forties I’m made to feel like I’m just being ditzy.

People ask about my body.  When a joint is braced they ask what happened.  When I’m wearing my TENS machine they empathise with my back pain.  When I’m wearing my finger splints they ask why.  But when I talk about my brain injury there is an embarrassed silence and then it’s never mentioned again.  I’m somehow made to feel like if only I were more organized, more together, or tried harder my brain would be miraculously cured.  If only.

 

Weekly roundup

I do not have pretty legs.  Along with the ‘elephant knuckles’ on my hands I seem to have ‘elephant knees’, and in addition I’m bow legged due to my flat feet and consequently rolling ankles.  It’s my Camera Club’s annual dinner and awards presentation this Friday and one thing’s for sure, I won’t be wearing a skirt which is a shame because, although I’m not the most girlie girl in the world, I am female and it would be nice now and again to wear something pretty.  The situation has not been helped by all the bruises I managed to acquire while helping my neighbour last week.  I’ve no clue how I got them, they just appeared, but they sure aint ladylike!  Is it just me who thinks the bruises on my right knee have made a face?  And the ‘face’ on my left knee looks like it’s winking LOL!

For about 5 days this week I had bags of energy.  At the time I had no idea why but was grateful and made the most of it 🙂  I got all sorts done, then woke up Tuesday morning to discover my period had arrived.  I was only on day 19 so it was completely unexpected, bearing in mind my cycle last month was 32 days.  Due to my endometriosis I usually have plenty of warning when my period is on the way in the form of back and stomach pain, but this month nada.  I can’t believe some women go through their whole lives like that, just having periods and it’s no big deal.  I’ve never had a pain-less period in my entire life and it was wonderful but weird!  I’m now putting my preceding energy spurt down to hugely surging hormones.

The few days since my period has ended have not been as great.  I appear to be having post-period tension and am like a weepy bear with a sore head.  My dwindling hormones also give rise to spotting for days on end and my back and reflux are rubbish.  My proprioception is also way off and I’ve spent three days banging into the furniture, dropping every item I pick up and spilling everything from my morning cuppa to the liquid which goes in my washing machine draw.  It’s driving me nuts!

To add insult to injury my cold-induced cough is still lingering.  Three weeks of hacking up phlegm when you’re already ill is pants and I just wish it would do one.

Wednesday was my last Camera Club of the season and we won’t meet again until September.  I’ll really miss it.  It’s the only time I ever get to see people and I enjoy being sociable as much as I enjoy the photography.  However, at the same time I do find the 2 hours I spend there exhausting.  Thursdays are always a right-off and I’m still suffering the consequences on Friday.  Bertie will be happy though.  He’s usually fed at 4.30pm then sleeps til 6am the next morning – having to go out in the cold at 6pm to be dropped off at his Nannie and Granda’s and not getting back home til 10pm makes him tired and grumpy 😉

I started a 2 week stay-cation on Friday.  As regular readers will know, I decided that I deserve holidays just like everyone else and although I can’t afford, and am not well enough, to go away that doesn’t mean I can’t abandon my parents and my home for a fortnight three times a year.  I’ve made sure my Mum and Dad don’t need anything doing, I’ve cooked and frozen enough meals to see me through and caught up with my laundry.  Apart from still having to take Bertie out, I’m spending my days doing what I want and not thinking about anyone else for a change.  Bliss 🙂

Today is Easter Sunday.  Like most heathens the religious significance passes me by, but I am going out with my parents for lunch which I’m both looking forward to (getting out of the house and not having to cook) and dreading (Dad being scatty and Mum being drunk).  Whatever you’re all up to I hope you have a lovely day 🙂

Save the one who’s quiet

In a previous job many moons ago I was the designated fire officer.  As such I was trained to pull a body from a smoke filled building and to give first aid.   On my course I was told that when you come across the scene of an accident you ignore the people who are shouting because they are clearly still alive and find the people who are quiet because they are the ones most likely to be seriously hurt, unconscious or to have stopped breathing.

During my time in the ‘chronic illness world’, particularly online, I have met two groups of people: those who constantly ask for help, advice, love and support and those that don’t.  And it’s those who ask for support that often need it the least.  The friend I fell out with a couple of years ago had parents who had been together for 50 years, a loving, caring, supportive husband of over 20 years, private health care, a beautiful home overlooking the sea, lots of online friends………..yet virtually every post was asking for love, prayers and positive thoughts because she was having yet another crisis or hard time.  On the other side of the coin I have a friend who has been single her whole life, is horrendously ill, can barely leave her bed let alone the house, can’t have pets or friends to visit as she is too poorly to cope with them, must be soul-destroyingly lonely, frustrated and unfulfilled……..yet never complains.  She comes across as cheerful, positive, caring, kind and thoughtful but I worry about her far more than I worried about my other friend.  Yet it was the other friend who got all the support on Facebook, cards and flowers sent through the post, thoughtful gifts on her birthday and Christmas and my very sick, isolated friend is just left to get on with it.

When you meet me, I come across as bubbly, energetic, enthusiastic and hopefully kind and helpful.  I have a strong work ethic and will tackle jobs which actually make me sick or cause me huge pain because I refuse to give in to my diseases.  I will do things to help others, even if it means I end up in bed or braces (which they don’t see because I don’t tell them – I don’t want them to feel bad that helping them has made me worse).  I have been accused of exaggerating my illnesses because I can ‘do stuff’ or because I don’t dwell on the consequences of ‘doing stuff’ so no-one knows how ‘doing stuff’ affects me.  I sometimes wonder if I’d’ve received more help, understanding and support if I’d been more verbal about my limitations.  If I’d constantly gone online saying how lonely I was, or how isolated.  If I’d shown the world how depressed I’ve been at times over the last twenty years.  How I mourn not having a husband to share my life with.  How I’d love to go on holiday to somewhere sunny.  How I worry about finances and how I struggle to afford joint supports, orthotics, supplements and special clothing.  How I’ve sat in a heap on the kitchen floor crying due to the exhaustion and pain of cooking my dinner.  And the 1001 other issues I’ve faced.   But it’s not in my nature to whine.  I’m not comfortable asking for help and on the odd occasion I have asked for help it’s been less than unconditional so I haven’t asked again.  I’ve been around people who are negative and constantly ask for reassurance, help, guidance, advice, love, prayers and support and it’s bloody exhausting…….I don’t want to be a huge black hole of need, sucking the life out of others just so I can feel better.

But it is often those who don’t ask for help who need it most.  It’s not the person shouting “I’m going to top myself” who actually commits suicide, it’s those that pretend everything is fine and paint a smile on who ultimately take their own lives, then everyone is shocked because “they always seemed fine”.

So I make a concerted effort to ask my friends who seem like they have it together if they’re OK and I don’t take the first “yes, I’m fine” answer as the truth.  I dig a bit, and often when I dig a bit they admit that maybe things aren’t so fine after all.  It’s hard to ignore the friends who shout because, well, they’re SHOUTING and it’s easy to not contact the quiet ones for 6 months because they’re just getting on with it but it’s the people who don’t ask for help that often need it the most.

“Nobody heard him, the dead man,
But still he lay moaning:
I was much further out than you thought
And not waving but drowning.

Poor chap, he always loved larking
And now he’s dead
It must have been too cold for him his heart gave way,
They said.

Oh, no no no, it was too cold always
(Still the dead one lay moaning)
I was much too far out all my life
And not waving but drowning.”

Stevie Smith