Tag Archives: gratitude

It’s life, Jim, but not as we know it

I had brunch with my friend D recently.  He’s 75, widowed and severely disabled.  We were talking about porridge and how I sometimes just have a bowl of it for my tea in the evenings as I have my main cooked meal at lunchtime.
“What kind of porridge do you use?” D asks.
“Quaker Oats So Simple” I reply, “it takes 2 minutes in the microwave”.
He pulls a face.  “Eugh, I only like porridge done properly in a pan”.
I roll my eyes.

Does he not think that I’d prefer proper porridge made in a pan?  Pan porridge compared to microwave porridge is the difference between sirloin steak and cheap mince!  However, pan porridge takes 5 minutes during which time I actually have to stand up, then there’s a god-awful sticky pan to deal with afterwards, whereas I microwave my quick porridge in the bowl I eat it in and it’s ready in 120 seconds.  When you are sick and lacking energy choices have to be made.

We then talked about what else we eat in a day.  He tells me he goes out to a greasy spoon cafe most mornings and has a fry up, then eats nothing else for the rest of the day bar some toast or fruit in the evening.  He’s diabetic for heaven’s sake and has been found to be low in both iron and B12 which is probably one of the reasons he’s absolutely exhausted all the time.  So I arrange for a Wiltshire Farm Foods brochure to be delivered, which he doesn’t even bother looking at.  Someone else arranges a visit from the Meals on Wheels service.
“How did that go?” I ask.
” I discovered they’re made in a school kitchen!” he says, horrified.   Eugh!  I’m not having meals made in a school kitchen”.
Well eat nutritionally defunct food and feel like crap all the time then, I felt like saying.

We then get on to the subject of kitchens.   He’s recently moved house and needs a new kitchen installed.  I suggest a quality firm in town, who will send a rep to his house to measure up and I’ve already picked up all the brochures for him to choose the units, worktops, taps and tiles.
“Have you decided on the units?” I ask him.
“Yes, but I need to contact a company in Durham regarding the worktops.  We had these lovely granite ones with a copper streak in when we lived in Cheshire and I’d like those.  They have to make a template up in wood, then they carefully lay the worktop over that – they have to be soooo careful as it’s really delicate and can break while they’re fitting it.  I’m sure the rep will come over to advise and measure up.”
FFS.  His kitchen measures 8ft wide by 12ft long and he’s 75 fucking years old.  Why on earth would he make life hard for himself by getting some firm 90 odd miles away to come and do him a couple of bespoke counter-tops which will take months and cost a small fortune?!  The thing with him is, he still thinks he’s putting a Miele kitchen into a 30ft award winning barn conversion like at his old house.  But he’s not.  That life has gone now and he’s living alone in a small disabled-friendly bungalow.

I find this a lot with both old and sick people, my own parents included.  There is a stubborn refusal to adapt to changing circumstances, or any acceptance that our lives are no longer what they once were.  It’s particularly apparent at this time of year.  We see all the adverts for perfect Christmases on the telly and we want a part of it.  Before I got M.E. I used to make mince pies from scratch, invite all my friends over for dinner the week before Xmas, make a day of choosing a real tree, wrestling it into a bucket of water and decorating it from scratch (then spending an hour hoovering up rogue pine needles), buy everyone and his dog presents which I’d spend hours immaculately wrapping complete with matching ribbons, tags and bows, and send over 100 Christmas cards, not to mention making a couple of trips to the beauty salon to get my nails done and my hair coifed read to paint the town red.  Then I got sick and everything changed.  I can’t remember the last time I went to a beauty salon, I bought a fake pre-decorated pre-lit Xmas tree in the Boxing Day sales one year which I get out of the shed each December and simply plug in, I buy my mince pies from Booths, culled another 5 people off my Xmas card list this year which brings the numbers down now to 36, and not only do I invite no-one over for dinner I won’t have a single visitor to my home for the entire festive period.

For all the years I was bedridden I, of course, didn’t have the energy to have a Xmas tree of any description, and being as though no-one offered to put one up for me I used to hang a couple of baubles from a little palm plant in my bedroom.  I really enjoy Christmas and if that was the only way I could take part then so be it.

We have 2 choices when we get sick.  We either deny ourselves any kind of pleasure because it’s not perfect or what we’re used to, or we can make the most of what we’ve got, even if it’s not perfect or what we’re used to.   Twenty six years down the line do I still yearn for my old Christmas back?  Of course I do, but it won’t stop me from sitting in my pink rocking chair by the fire on Christmas Eve, with my Xmas tree lights twinkling, reading a favourite book and being grateful for what I have.

No-one understands more than me how hard it is to let go of the life we’ve dreamed about, but torturing yourself over things you can’t change is utterly pointless and killing yourself trying to do things the way you always have is a recipe for disaster – instead of enjoying Christmas you’ll just be in a sick, exhausted heap on the kitchen floor at best, or bedridden at worst.  Not celebrating at all isn’t the answer either.  If, when I first became ill, I’d said to myself “Christmas isn’t the way I want it to be so I’ll just not bother” I would have had 26 years of no Christmas at all – how depressing is that?!

I spent 10 years without Christmas.  I was too ill to get dressed, put up a tree, had no way of buying gifts (no internet then!) and even if I had I didn’t have the energy to wrap them and writing my cards took me 2 months, so even though the holidays these days aren’t what they were when I was well I cherish them.  I won’t see anyone.  I won’t have a ‘proper’ Christmas dinner (I’m not well enough to cook one and my parents certainly aren’t).  I hardly get any presents.  I’ll spend Xmas morning, and Xmas evening, alone and in the middle I’ll be with my alcoholic Mother.  Due to my HIT I can no longer eat mince pies, drink mulled wine or stuff my face with chocolates.  But I’ll still cherish the holidays.  I am alive, I have family, I have my lovely home and my lovely dog.  I have the energy to get dressed and walk with Bertie in the freezing winter cold, to watch telly or read a book.  I have a sparkly Christmas tree 🙂 And for that I am thankful.






Sorrow & Appreciation

I am a different person to the me of my twenties.  Back then I had no clue I had hEDS or MCAS and absolutely no idea I was about to endure a decade of solitary confinement and lifelong imprisonment by M.E.  I worried about cellulite (!), putting on 3lbs and what the world thought of me.  I used to paint my toe nails, shave my armpits and nourish my skin with Astral moisturizer (still the best moisturizer around, even if you feel like you’re slathered in grease 😉 ).  I dreamt about who I would marry, if I’d have children or whether my career would take precedence.   Normal shit y’know?

I am now 51 and have been to hell and back.  Literally to hell and back.  With hindsight, I have no idea how I have endured some of the experiences I have lived through.  It has changed my soul.

When I was bedridden, I prayed to die.  Every day.  I wouldn’t let my dog suffer the way I suffered.  I don’t even have words to describe what having severe M.E. feels like.  It is pure bodily torture, every nano second of every day and on top of the physical suffering every single pleasure in life was denied me.  I couldn’t eat.  I absolutely couldn’t sleep.  I couldn’t watch TV.  I couldn’t stand sunshine.  I couldn’t chat with my friends.  I couldn’t read a book or listen to music.  I couldn’t sit upright.  I crawled to the loo and back.  I couldn’t shower and to this day have forgotten what moisturizer feels like.  I couldn’t clean my teeth – for 4 years.   I lost my boyfriend, my job, my car.  And when it all got too much and my body was wracked by grief at all I had lost I couldn’t even be held by my Mum because it was too physically painful.  I knew I’d never marry, or have children and the career I’d worked so hard for was gone forever.  I had nothing.  I was nothing.  I merely existing in a poisoned state of isolated suffering.

And then the sun came out.  Little glimpses at first.   Shafts of light through a heavy canopy of leaves.  But eventually I stumbled out of the dark woods and into the daylight.  Can you even begin to imagine what standing in a sunlit flower meadow, surrounded by butterflies and buzzing insects, feels like after 14  years of solitary confinement in a dark room?   Heaven isn’t some place in the sky.  It’s here, it’s now.  We’re surrounded by it and don’t even see it.


One of the things people say when they meet me for the first time is that I seem happy, despite my health problems.  That’s because I am.  I see the world differently to them.  I went to bed last night with yet another migraine, feeling sick to my stomach and with killer back and hip pain.  I woke this morning and my migraine has gone and, for now at least, my back and hips at least aren’t screaming at me.  And within the first 30 seconds of opening my eyes I was grateful.  Hugely, joyously, grateful.  Then Bertie got on the bed, with his still-young eyes and cute Schnauzer mouth, and as I cuddled his warm, furry body and he licked my sweaty armpit I laughed out loud.  He makes me laugh every day of his life.  I had a brew and it tasted fabulous.  I put the telly on and revelled in the company it gave me.

I don’t ever dwell on everything illness has taken from me.  The grief of that would be my undoing and the pain too much to bare.  Just writing that sentence brought tears to my eyes as long-repressed emotions surfaced.  I have to swallow them back down.  I have to choose, instead, to focus on all I have.  Every nano second of every day is still a struggle but at least now I have a life and it is beyond precious.

This post was inspried by severe M.E. sufferer Naomi Wittington.  We don’t personally know each other, but we have friends in common and one such friend this morning posted on Facebook a blog post Naomi had written.  She writes with such eloquence and truth I wanted to share her world with you.  If nothing else I hope it makes you appreciate what you have just that little bit more.  And if you’re in the darkness I hope it makes you feel heard and less alone.

Bucket List

Bucket Lists, ie a list of stuff you want to do before you die, are popular at the moment.  I look at them and wonder when people list “swim with dolphins” or “jump out of a plane” exactly what kind of hole jumping 10,000 feet into thin air is going to fill in their lives.   How empty can a life be that swimming with fish is the pinnacle of achievement?

I seem to think very differently to the majority of people.  I don’t understand sport for example.  The current obsession with the Olympics baffles me.  That someone would spend their lives training to the point of exhaustion to chuck a metal ball on a bit of string to see how far it will go.  Or spend their lives running round and round and round a track in circles or chasing a ball of air up and down a pitch.  It’s all just so……..pointless.

Someone posted a different kind of bucket list on Facebook recently, which at least has a bit more thought behind it but his bucket list seems like really hard work to me.  It feels like a shed load of pressure to be perfect, instead of accepting our flaws and loving ourselves with all our imperfections.

I thought long and hard about what I would put on my bucket list and I couldn’t think of anything.  That’s because I already do the things which bring me the greatest joy every day.  I gaze into my adoring dog’s eyes and feel love so profound it makes me tearful.  I get lost in nature with my camera, watching with fascination the soaring life of birds and the hard-working toil of insects.  I marvel over the cycle of birth, life and death and watch with awe the changing faces of the seasons.  I am appreciative of the food I eat and the warm bed I sleep in at night.  I set myself challenges and goals every day, whether it’s to take a better photo, or write a paragraph of my book or to do something to help my parents, even when I don’t feel like doing any of it.  I appreciate my friends and I try to be kind.

We in the developed world are so spoiled.  We constantly seek out new thrills, new stuff to be bought, new horizons, new adventures…….and forget we already have everything that truly means anything.

If you wake up every morning with a passion for the day ahead, with gratitude at what you have not regret at what you don’t, and joy that you get to spend another day on this wonderful planet of ours then I’m not sure what else there is to a well lived life.  My bucket is already full.

“Go placidly amid the noise and the haste, and remember what peace there may be in silence.”  Max Ehrmann, Desiderata.