Tag Archives: acceptance

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.






Accepting illness

When I first developed M.E. I had no idea I’d still be sick 24 years down the line.  It didn’t dawn on me that I had a ‘chronic illness’, the emphasis being on the word ‘chronic’.

The advice back in 1994 was that M.E. was a self-limiting illness and I would soon be better, so for the first couple of years I just waited for my health to return.  And I waited.  And I waited.

Not only did I not recover I actually got a hundred times worse, so during the next 4 years I scoured the globe for a cure.  I was on every internet group, forum and chat room invented and having read about other people who had recovered I was determined to find my own magic bullet (the fact that many of them probably didn’t have M.E. to start with and had been misdiagnosed passed me by!).  I was chanted over by a Tibetan Monk, did every diet known to man, tried every supplement, herb & drink on the market, sat in cold baths, was electrocuted, did acupuncture, reflexology, hands on healing, massage, osteopathy, chiropracty, listened to Neuro-linguistic programming tapes, meditated, did yoga breathing, tried to exercise, drank electrolytes & raw olive oil ……….you name it I did it, nearly bankrupting my parents in the process, and none of it worked.  In fact 80% of the treatments made me sicker than ever and some made me so ill I ended up in hospital.  This phase of chronic illness, where you dedicate your life to learning about your disease and are convinced you will be cured, is one shared by most of us I’m sure.

After 6 years it became obvious that I wasn’t going to get better any time soon and I’d read enough from other M.E. sufferers to know that once I’d been severely affected for that length of time full recovery was highly unlikely, so I finally accepted the ‘chronic’ part of my chronic illness diagnosis, throwing in the towel on my M.E. degree course.  There is no cure for M.E.  If there were none of us would be sick.

I seemed to skip some of the stages of the illness acceptance process.  I’ve never had the ‘why me?’ phase and I’ve never had the anger phase.  I think I was just so incredibly poorly that I didn’t have the energy for wasted emotions – when you ask ‘why me’ you also have to counter that with ‘why not me?’  I did do the bargaining phase, pleading with God to heal me in return for angelic behaviour, but I think God had his fingers in his ears.  To be fair He’s been a bit shit when it comes to helping me.

I didn’t lie down and wait to die, however.  I knew that even if full recovery wasn’t on the cards partial recovery might be possible so I worked towards that – you can read about my journey here.  I’ve always had a fighting spirit when it comes to my health and a determination to live my best life despite my limitations.  And, eventually, after a decade I did see improvement and am now classed as moderately affected rather than severe, which realistically means I am no longer bedridden even though I still have to spend large portions of the day in bed.

I think I’m lucky in that I accepted my disease fairly early on and feel so sad for people who, despite being ill for years and years, are still frantically searching the internet for a non-existent cure or some quick way of improving their situation.  There really isn’t one.

When I was 42 and received my Ehlers-Danlos diagnosis I felt nothing but relief.  I’d had health problems my entire life which had been dismissed by doctors and I’d been made to feel like I was either nuts, attention seeking or a hypochondriac.  I embraced my disease from day one and was actually thankful to finally have all the pieces of the jigsaw puzzle finally slot into place.

As with M.E., though, the first few years were a steep learning curve and I joined various forums to find out as much as I could.  I was still naive in that I thought a bit of physio and the odd brace or two would dramatically help my situation when nothing could be further from the truth.  I also thought I’d be helped by a team of knowledgeable doctors and specialists and of course that turned out to be a pipe dream too.  This time I was angry about that.  Here was a recognized genetic disease and no-one had a clue about it or how to help me.  It probably took about 3 years for me to realize that I was basically on my own and was going to have to manage the illness myself.  Having already had to do that in respect to my M.E. I was mightily pissed about the situation but looking back now 8 years down the line I recognise I was actually in the ‘cure me’ phase and hadn’t yet accepted that I had an incurable disease for which there is very little effective treatment bearing in mind I can’t exercise due to my M.E.

My reaction to having MCAD and HIT has been mixed.  When I initially received the diagnoses I was euphoric.  I was seriously ill and being told by local Doctors that I was either having a panic attack and needed some CBT or that I didn’t have cancer, wasn’t that great and sent packing.  Finally discovering that I was having anaphylaxis, was seriously ill and did actually have something wrong with my immune system was the best news ever.

I was reacting to everything I put in my mouth, even water, so afer I discovered what the problem was I embarked on yet another degree course this time on all things histamine.  Eating is vital for survival and I’d already dropped a tonne of weight so finding out about low histamine diets and trying to get my anaphylaxis under control was urgent and consumed my every waking minute for the first eighteen months.

I soon came to realize, however, that even less was known about HIT and MCAD than about hEDS and M.E. and most of what I read about low histamine diets was based on nothing but guesswork because hardly any research was being carried out into the histamine content of food.  I was sceptical about self-professed online ‘experts’ who were making money out of books and courses on lowering histamine because not only did they not have the other diseases from which I suffered, such as hEDS which is the cause of my mast cell problem, when you’re making a living out of something and depending on making a profit it’s hard to stay objective.  So after the initial euphoria I became hugely disillusioned and felt terribly alone and to some extent still do because I’m not under the care of a Consultant and my GP knows diddly squat about either disease.

By luck or by crook, however, I did manage to get my food reactions under control and it’s now rare for me to react to something I’ve eaten.  Four years later I’m more accepting of my MCAD and HIT but, unlike my M.E. and hEDS, I still feel some resentment that I have this extra burden on top of an already burdened life.  Food had been the one thing I could still enjoy and now that, too, has been taken away.  I suffer from daily pain, horrendous migraines and need surgery for my gynae issues but of course any form of treatment is out of the question due to my drug reactions.  That my body is denying me simple pain relief and the ability to eat what I like can make me massively depressed and there have been times over the last four years where I’ve honestly contemplated suicide because I feel so worn down by my health problems and the fact that life has been so hard for so long.  Thank God for my little dog who is often my only reason for living.

Having spent the first two years of my MCAD/HIT diagnosis obsessed by food and finally having my reactions under control I simply don’t want to have to think about it any more, which is why I’m not still writing about food here on my blog and barely ever mention diet.  I’m so over it I can’t even tell you.

Anyone who gets diagnosed with a chronic illness goes on a journey of emotions and that journey will be different for all of us.  The trick is to not get stuck at any point along the path and to end up at your final destination, which is acceptance of your situation so that you can get on with living the best life you can.



Avoiding The Pit

I am prone to clinical depression.  I had a chaotic childhood which predisposed me to mental health problems.  I have mast cell disease which definitely affects my moods and depression runs in my maternal family, in my Aunt’s case so severely she had electric shock therapy (which BTW doesn’t work).  My Mum has suffered from depression my whole life and I have three female cousins who turned 50 this year and all have suffered from depression for as long as I can remember, albeit at various levels.

I was clinically depressed during my teenage years and half-heartedly attempted to take an overdose.  I was definitely depressed when I got divorced, though it wasn’t clinical depression.  And I have had one serious depressive (actually more bipolar) episode since I became ill, though I think that was mast cell related because it was totally out of my control and felt more biochemical than emotional.  So when I talk about depression I do have some experience of the condition.

But I am not a victim of depression.  I bloody well refuse to be.  I have watched my Mum suffer from the disease my whole life and do absolutely nothing about it.  Being miserable seems to be a familiar comfort blanket and certainly not something she seems to want to change.  I simply don’t get that.  I only have one life and I’m damned if I’m spending it moping around and bringing everyone around me down.  I’m acutely aware I have a tendency towards depression and am as proactive about that as I am about my physical health.

So how do I go about avoiding the pit of depression?

  • Acceptance.  We can’t change the past and, in my case, I can’t change the present either – I’m never going to be healthy again a day in my life and there is nothing I can do about that.  So I accept it just like I accept the weather outside my window and I live as full a life as I can despite it.  When I was bedridden and suffering the tortures of hell it was impossible to be “happy” but I learned to be accepting, which gave me peace.
  • Purpose.  We all need a purpose in life or there’s no reason to get out of bed in the morning, especially when that involves pain and illness.  My little rescue dog gives me that purpose.  Regardless how I’m feeling he’s awake at 6am and demanding to be fed.  He then wants a tummy rub, his morning walk (paid for by me), his feet wiped, his Dentastix for lunch, another walk, more feet wiping, his tea and a bedtime cuddle.  My reward for all that hard work (and, oh boy, is it hard work) is completely unconditional love and a furry bundle that makes me smile every day of my life.
  • Passion.  I honestly don’t know how I’d get through without my photography.  It gives me a goal, pleasure, forces me to get out in the world, mingle with other people and forget about my health for an hour or two.  The editing side of photography is something I can do in bed, picking it up and putting it down again when my health and energy wax and wane.  I simply love it.
  • Distraction.  Due to all the resting I have to do my mind has a lot of time to think and not all my thoughts are helpful, so I have to find ways of switching them off.  I watch far too much TV, even having it on in the background when I’m cooking or doing chores, so that my brain is distracted from dwelling on the negative.  I listen to loads of talking books which I download free from the Library.  I have them on when I’m out with Bertie, driving the car or lying in the bath – in fact any time I am relaxed, because I don’t want to give my mind too much space to think about stuff which only makes me sad, angry or frustrated.  I even listen to a talking book as I drop off to sleep or wake in the night, so that my brain has something to focus on other than how crap I feel.
  • Gratitude.  I know this is an Oprah cliché but for me if I start focusing on all the things I don’t have or can’t do my mood nosedives, so when I find that happening I make a conscious choice to be grateful instead.  I had my Christmas groceries delivered yesterday and as I was huffing and puffing and moaning to myself about having to put it all away (my back, neck and arm are still really painful) I stopped in my tracks, called myself an ungrateful cow and started thinking instead about how lucky I was to have all this beautiful food and a clean, safe home in which to eat it.  And then I spent a cosy hour on the couch stuffing my face with Pringles and watching Eastenders.  Bliss, although my waistline will never forgive me 😉
  • Setting myself up for success.  My whole life I’ve attracted people with issues who want to offload their crap on to me.  Which is fine – we all have problems now and again and need someone who can empathise, but I began to realize that these people’s problems were never resolved. They were emotional vampires, sucking the very life out of me in order to raise themselves up and they had to go.  Which is why I feel so trapped in the situation with my Mum because if she were anyone else in the world I would have dumped her ages ago.  I only want to be around people who make me feel joyful, happy, supported, encouraged and understood and the relationship has to be a two way street – gone are the days where my friends and  family do all the taking and none of the giving.

I also avoid negative information.  I catch the news headlines so that I know basically what’s happening in the world and then I switch channels.  There is nothing whatsoever that I can do about the situation in Syria, Brexit or the fact that 6 people were killed on the motorway this morning and hearing about it can make me feel emotional, so I don’t listen.  I don’t embark in heated discussions online because I find it stressful and you can guarantee someone will lose their cool and start being nasty which I don’t need.  I try my level best not to take on the weight of the world because my shoulders simply aren’t wide enough.

  • I put in the work.  I’m sure some people are born with a sunny disposition and nothing gets them down but I sure as hell wasn’t.  For me, happiness takes work and it’s something I aim for each and every day.  If you’re predisposed towards depression you have to make an effort to not be depressed.  And it is an effort, especially when you’re already feeling ill and exhausted.  But the good news is the more you practice happiness the easier it becomes, whatever life chucks your way.

Disease Denial

I’d guess that 100% of us are in some form of denial when we’re first diagnosed with a chronic illness.  Obviously we know we’re sick and for me personally all three of my diagnoses were a huge relief because finally I could put a name to my symptoms and stick my tongue out at all the doctors who’d told me there was nothing physically wrong, but there was still a massive amount of rejection of the fact that I would never get better and my life had changed forever.

When we’re first diagnosed we go online and read about all the success stories.  People who’ve had dry needling and physio and have gone from needing a body cast and a wheelchair to running the London Marathon and we think ‘yep, that’ll be me’.  Only it usually isn’t, especially for those of us who are diagnosed with hEDS in our middle or later years and who have already had decades of untreated trauma to our joints and ligaments.

In the case of M.E. the denial can be particularly strong.  The internet is full of people who have been ‘cured’ and we don’t twig that they never had M.E. in the first place because it’s a disease with no test and widespread symptoms which can be mistaken for scores of other illnesses.  Even my Doctors told me I’d soon be better because “most people make a full recovery within two years” which is probably the biggest fib I’ve ever been told.

I went online in the early years of M.E. and read about people recovering after ice baths, gluten-free diets, hyperbaric oxygen, bee propollis, lymphatic drainage, Ampligen and 2000 other treatments and thought “right, I’ll try every single one cos I’m 26 years old and I need my goddamn life back”.  So my parents spent in excess of £20,000 on everything from reflexology to experimental electrical stimulation and it made not one iota of difference.

People with M.E. can, and occasionally do, improve but from my years of experience of the disease I’ve never come across anyone yet who’s made a sustained improvement because of some weird or wacky pill or therapy.  Nope, it’s been the same thing in 99% of cases and a recent story on the ME Association’s facebook page proves the point.  For most people, any kind of recovery includes the following:

  • Rest
  • Good balanced diet, with plenty of antioxidents
  • Avoiding stress
  • Drugs to help with sleep and pain
  • Pacing
  • Gradually increasing activities over a number of years (sadly not days or months).

It’s that simple, yet so incredibly difficult hardly anyone achieves it and sometimes despite doing all the right things no improvement is seen.  I especially wonder if it’s even remotely possible to achieve improvement if you have kids because there’s no way on earth of having a stable routine every day, or getting the rest and sleep you need, when you have a family.  And it’s absolutely not do-able if you continue to work.  That’s hard to hear isn’t it?  And even harder to accept.

I know people with M.E. who have been ill for two decades yet are still in denial.  They’re stuck in the grief and pity stage and haven’t moved on to the acceptance stage.  They’re constantly online expressing amazement that their symptoms wax and wane or are worse after activity yet still won’t change their lifestyles to allow their symptoms to stabilize.  Asking their friends to pray for them or send them positive vibes, frantically still trying to find peace.  It makes me so sad.

I can tell my friends who’ve reached acceptance because they rarely mention their disease(s).  They talk about their pets, or books, or telly programmes, or how shit their Carers are, or the wildlife they see from their windows and there is nothing about their pain, physical or emotional.

I was listening to an Australian radio interview given by Jen Brea and her husband last week and she made a very potent point.  That it’s a fine line to tread between acceptance of your situation, living in the moment and finding joy and peace, yet never giving up hope that science will catch up and find a cure or effective treatments.  I think people who are in denial might feel that if they accept their situation it means giving in and giving up, when of course it means nothing of the kind.  I am completely at peace with my situation yet there is always, always hope that there will be a breakthrough, particularly in the case of M.E. and MCAD, and a treatment will emerge which will give me back at least a portion of my healthy life.  But in the meantime I have to live with my diseases and stop wasting my precious energy searching for the impossible.

When I come across people in denial, especially if they’ve been ill for several years, the blunt side of me wants to say “FFS.  Which part of the words chronic or incurable is it that you’re not understanding?!” which I know sounds harsh, but if there were an effective treatment out there none of us would be suffering.

Ironically, it’s only when I gave up hope of ever recovering and accepted that I was sick and I’d be sick forever that I actually started to improve.  For the first 6 years I’d used every ounce of emotional, mental and physical energy I had trying to research and try treatments.  But my poor brain wasn’t well enough to be on every forum known to mankind or to be spending hours each day reading other people’s stories.  My emotions weren’t well enough to cope with the continual excitement and hope of trying a new therapy and the inevitable grief and depression when it didn’t work, or more usually made me even sicker.  My body wasn’t well enough to cope with weekly trips to the therapist and the hours and days afterwards spent trying to recoup my energy.  In trying to get better I was actually making the whole situation worse.

However, it’s absolutely pointless telling people who are in denial that they are in denial because they’re not ready to let go of their old life and who can blame them?  All you can wish is that they finally find peace and acceptance, which might not make them physically better but will definitely make them happier.


Moving On

By the time we reach our 50th year we all have emotional baggage.  I have so much it would fill several airport trollies and need a small army of porters to tow it behind me, which would be both expensive and exhausting.  So at various times in my life I’ve made a choice to leave my suitcases behind.  I now travel along my life’s path with a large hold-all filled only with my most vital and treasured possessions.  It turns out all that baggage I thought I needed, and which made me me, was unnecessary.

As regular readers know, I did not have the best childhood in the world.  My parents lacked education, emotional intelligence and made some very poor decisions.  In my twenties I was really angry about that and the way their choices and behaviour had affected me.  But here’s what I learned: they did not know any better.  They had been taught poor coping mechanisms and interpersonal skills by their parents and were simply living what they’d learned.  By the time I was 30 I had to make a choice to forgive them or move away from them.  I chose forgiveness of my Mum and Step-Dad because I love them and they love me, and chose to let go of my biological Dad.

I have no idea why some people hold on to the pain of poor parental relationships.  Why anyone would spend their whole lives blaming their parents for how their own lives have turned out.  Yes our childhoods are determined by our parents, but our adult lives are not.  We can choose to let go, forgive (or not) and to move on.  We can talk through our issues with a trained therapist.  We can learn better ways of showing anger and hurt.  We can read books on how to improve our communication and interpersonal skills.  We can learn to do things differently to the generations who have come before us.  By the time we’re 50 we surely have to take responsibility for our own lives and not keep blaming someone else for how we’ve turned out.

“Do the best you can until you know better. Then when you know better, do better.” – Maya Angelou

I fell out with two of my closest friends in recent years and both were holding on to past pain, which I found frustrating.  One had had an eating disorder since her early teens.  She was adopted and had let this dominate her entire adult life.  She never sought help and when her body started packing up from years of malnutrition to be honest I found it hard to have much sympathy.  Her food issues set a bad example for her three children and I couldn’t understand why she hadn’t even tried to sort her shit out.  She herself adopted a child and it’s plain for everyone to see that she never really bonded with him.  She’s a good parent in that he’s looked after very well, but she keeps her emotional distance and is repeating the distant relationship she had with her adoptive Mum.  The other friend also had a strained relationship with her Mum, poor body image, couldn’t come to terms with her chronic illness and the effect this had had on her life, and basically wallowed in the whole thing.  Her constant ‘poor me’ attitude was really grating especially as, compared to me, she’d had a pretty good life!  Why would you not seek counselling and at least make a stab at sorting your issues out?  Why do some people get to their 40s and keep walking on the same old treadmill of pain and misery, focusing on everything they’ve lost and not on all the things they still have?  I can’t image waking up every day and hating myself or my body – how on earth would I face the days?

It seems to me that people who are still wallowing in past pain by the time they’re middle aged are getting something out of it.  You wouldn’t do it otherwise.  We are animals and we don’t embark on behaviour that isn’t rewarding, even if the reward is negative.  I pointed this out in an email I sent to the second friend mentioned above which she made public on Facebook and I was branded an evil witch and sent to Coventry by half my so-called ‘friends’, but I stand by every single word.  We all have baggage.  We all have relationships which have damaged us in some way.  I’ve had my entire adult life taken away through chronic illness as have many of you, yet I am happy.  I have my emotional shit together.  I do not blame my Dad for being crap, or my Mum for her lack of coping skills.  I realized I’d made a mistake in chosing my abusive Husband so I left the creep – I didn’t stay in the marriage torturing myself like my parents have done for the better part of 40 years.  I do not blame my body for letting me down – bless it, it’s doing the best it can to keep me alive despite everything.  I do not have the life I’d planned, but I do have a life and I have no intention of living it in misery.

Happiness is a choice.  No matter what’s gone on before we can wake each day and choose to not let our past define our future.  We can forgive ourselves, and others, for our mistakes and for not being perfect.  I am not one of these happy clappy people who embraces my disability – who the fuck would embrace a broken body?!  But I accept my broken-ness and try to live the best life I can despite it.  If I focused on everything my illnesses have taken from me (career, partner, kids, money, holidays, hobbies) I’d probably top myself, so I don’t focus on it!  It’s not rocket science.


Cure me!

I’ve written variations on this post over the past couple of years, but it’s always worth repeating for new visitors to my blog.

None of us want to be sick.  I’ve lost virtually my entire adult life to illness and it’s not a path I would ever have chosen.  I was bedridden from 26-36 at a time when my healthy friends were marrying, having children and developing careers.  I’m now 48 and I still spend 17 hours of every day in bed.  I still have no career, no partner of any description let alone a husband, live in increasing poverty and the simple tasks of every day living are a constant struggle.  It’s not much fun.

But in many ways I’m one of the lucky ones.  I developed ME in 1996 and it only took me 6 years to realize that:

  • There is no cure for ME and
  • I would be sick, to varying degrees, forever.

So when I was diagnosed with both EDS and MCAD, neither of which are curable or particularly well treatable either, it wasn’t that much of a big deal.

I have friends who, 20 years on, still can’t come to terms with the fact they are chronically ill with a disease (or diseases) for which there is no cure or really effective treatment.  I can’t image how stressful that must be.  To search for decades for something which doesn’t exist.  To not be able to find peace with your situation.  To constantly be longing for a non-existent future and, by the very nature of that, not living in the present.

That’s not to say you should give up trying things which might help.  One of my friends was bedridden with ME for 15 years before discovering that low dose Naltrexone helped her enormously and she now lives on her own with the help of Carers.  But I look at posts on the ME Association’s Facebook page from newly diagnosed people asking if L-glutamine will stop their pain, or if Lymphatic drainage will cure them and I want to scream “OF COURSE IT WON’T YOU NUMPTY.  IF IT DID NONE OF THE REST OF US WOULD BE SICK!”.  I don’t though, cos they need to come to terms with the fact there is no cure or effective treatment in their own time and in their own way.  It’s really tempting though!

In America in particular, where money buys you anything, my sick friends are often taking 2 dozen pills and potions a day and trying really weird and wacky treatments like hyperbaric oxygen and I just watch the crazyness with an aching heart.  I have friends who tried all that shit 20 years ago and, spoiler alert, they’re still sick and financially destitute to boot.  That would be because ME isn’t a curable disease, particularly if it’s complicated by other diseases as it so often seems to be.

I’m now going to get comments from people who know people who were really ill and are now ‘cured’.  This is why an accurate diagnosis is crucial.  There is no diagnostic test for ME and because of that people get diagnosed with it when they actually have a variety of other diseases.  They then try a gluten-free diet and, voila!, they’re all better.  The fact they obviously didn’t have ME in the first place never crosses their mind – they have the cure for ME and are determined to preach it to the world.  They annoy the shit out of me.  And don’t get me started on people who are cured by eating medjool dates or wheelbarrow loads of kale because they annoy me even more.  Complex neuro-immune diseases are not cured by eating an anti-inflammatory diet any more than they would be cured by 3 pints of a lager and a packet of crisps.  The very idea that diet cures disease is so bonkers I have no clue why the myth still perpetuates.  Actually I do know.  It’s born through desperation and I can understand that, if not embrace it.

I know some people with EDS who have been helped tremendously by physiotherapy or prolotherapy and I’m delighted for them.  I’ll be interested to see how that pans out when they’re 50 and menopausal though – I didn’t sublux a joint til I was 45 and my hormones did a runner.

In respect to Mast Call Activation Disorder the one thing reading Dr Afrin’s book showed me is that none of his patients were ‘cured’.  He helped some and didn’t help others no matter how many drugs he threw at them.  When you don’t know what causes a disease it stands to reason you really don’t know how to treat it, let alone beat it.

Nothing I say, however, will stop some people from chasing the dream of a cure.  In their hearts they know it’s futile but it’s become their reason for being.  Every last ounce of their precious energy each and every day will be spent on 2 dozen forums excitedly chatting to other people trying the same wacky, and pointless, treatments as them ignoring the fact there are no ‘cured’ people on the forum, or anywhere else come to that.  Chasing the cure gives them a goal, a purpose for the day when they have lost their sense of identity and reason for existing in the world.  I get it.  Truly I do.

None of us wanted this life.  But it is what it is and it’s still possible to find purpose, meaning and……dare I say it……joy in amongst the chaos and uncertainty.  For me that’s found in nature, my dog, my photography, helping my Church and my community as a volunteer from my bed, looking in on my 86 yr old next door neighbour who’s just lost her husband, blogging and hopefully helping you all wherever in the world you might be.  Focusing too much on our limitations, our pain, our suffering is unhealthy and we’re already sick enough.

We have to find a new way in this world we didn’t want or choose.  Does that mean I spend my days in a happy-clappy-zen-filled haze?  Don’t be stupid.  I get fed up, depressed, angry, frustrated, tearful, resentful, suicidal and spend a large part of every day bored out of my skull.  But then I did all that in my healthy life too – I had heartache, depression, grief, friendships which disintegrated, cheating boyfriends, money worries, time pressures and trust me when I say that doing the filing hardly filled me with job satisfaction.  It wasn’t all rose-tinted and fabulous, no-one’s life is.

“With all its sham, drudgery and broken dreams, it is still a beautiful world.  Be cheerful. Strive to be happy.”
Max Ehrmann, ‘Desiderata’