Category Archives: Personal growth


We are the centre of our own Universe and, when we’re children and young adults, we think the world should revolve around us.  As we age, however, we recognize that everyone has struggles, stresses, worries, wants and needs and that actually we have to curb our sense of entitlement in order to make the world function.  At least, we should.  But I’m amazed at how many people get to middle age still with an immature sense that the Universe revolves around them and think they can act however they like regardless of how it affects other people.

There’s a lady at my Camera Club who currently has some family issues (of her own making it has to be said) and also has quite severe health problems.  She arrived at Club last night clearly stressed and exhausted (I know this because she stood up and told the entire club) and having had virtually no sleep.  At the end of the evening she came across to the group of people I was with and started talking about what an awful week she’d had.  So I said “awww, bless you” and rubbed her arm sympathetically and she turned to me and shouted angrily “Don’t you say that IT’S PATRONIZING!”.  Alrighty then.  The rest of the group stood there with their mouths open at the attack – all apart from the man I’d been speaking to who slunk off (coward 😉 )  My response was to say “you’re obviously stressed and in a difficult position” but what I actually wanted to say was “well pardon me for fucking caring – I won’t bother in future”.  And I won’t.  In fact, I’ll avoid her like the plague from now til the day either she or I leaves.

We all have the odd bad day, but this woman makes it known week in and week out how difficult her life is, so it’s hard to stay sympathetic especially when her current situation is of her own making.  And the thing is, there are several people at my Club who have tough lives and health problems, but we don’t all go around taking our stress out on other people, especially when those other people have hard lives of their own.

You come across this a lot in the ‘sick world’.  People who, every time you speak to them online or meet them in town, moan on about how tough their life is and, honestly, I don’t want to know.  I have enough goddamn problems and stresses of my own.  It’s absolutely exhausting having to walk on eggshells around someone or to constantly have to take their shit on board, especially when you’re knee deep in your own excrement.

I think this is partly the reason I struggle to be sympathetic with my Mum’s drinking, which is clearly down to mental health issues.  I hate to have to say this but people with long standing mental health problems can be absolutely and utterly exhausting to be around.  They can be incredibly selfish and entitled and the universe absolutely has to revolve around them or everyone suffers.  And the thing which makes it so hard for me is that, compared to me, my Mum’s life has been pretty much OK.  And yet she is self-indulgently demanding and difficult and makes everyone around her stressed and exhausted when she should be thankful for her lovely home, money and hugely supportive family.  OK so her life didn’t turn out exactly how she’d hoped – get the fuck over it and be happy, because you’re a very long time dead.

It’s not generally in my nature to be nasty back when someone is nasty to me (although over the years there have been a few noteable exceptions!).  Instead I simply have nothing to do with the person ever again.  It’s when times are tough that you get to see someone’s true character and I don’t want anything to do with people whose character is to make other people feel shit simply because they feel shit.  Or to bring other people down because they feel down.  Or to shout at someone and upset them because they are angry and upset.

I really don’t understand all the anger many people seem to carry round with them.  Whatever has happened in your life you have two choices:  if you can change it or fix it then get on and do it, and if it’s not fixable or changeable (like chronic ill health) accept it and live with joy despite it.  Living the rest of your life in anger and misery, and spreading that to everyone around you like a virus, simply isn’t an option.


Strong Women

As some of my readers know, I was really struggling with the situation regarding my alcoholic Mother last Christmas so paid to see a therapist.  I come from a working class background (both parents worked in a factory and don’t have a qualification between them) and live in a farming community – if you have a sensitive disposition you’d sink where I live because swearing is the order of the day and men dominate.  And I do mean dominate.  Everything from their wives to the Chamber of Trade which as far as I know doesn’t contain a single female.   In my local newspaper 80% of the editorial is written by men – the only page dedicated to women is the ‘Women’s Institute’ – jam and craft making.  Yay.

One of the things the therapist said to me which really struck home was that I am a strong, intelligent woman and it appears that my whole life there has no been no place for that in my family.  How right she is.  Men can be as dominating and rude and dismissive as they like, but if women speak up they are classed as “opinionated”, “troublemakers” or just plain gobby.  I have been accused of all three on several occasions.  I rail against the differences in how the genders are perceived because it makes me furious.

To live an entire life so torn between conforming to the expected norm yet feeling the exact opposite has been confusing to say the least and has left me with huge inner conflict.  Take what happened at our Club dinner on Friday night for example.  I hated the seating plan.  To be told who I could speak to at a social event like I was 5 years old irritated the fuck out of me, so I told the organizer I wasn’t happy.  That’s all I said “I’m not happy” and all hell broke loose.  I then felt so guilty for upsetting the organizer that I was tearful on the way home, yet I had a valid opinion which I should be able to vocalize.

I’m still stressed about it nearly a week later and as stress badly affects my health I’ve barely slept or eaten all week.  I now face having to attend a committee meeting and put my views to the organizer who is a formidable, quite frankly rude and dominating personality.  Part of me wants to simply not do it while the other half knows I have a sodding right to my opinion.  However, when you’ve been told your whole life that having an opinion makes you a troublemaker the desire to just roll over and bow to other people’s wishes is overwhelming.

My best mate said to me once that for someone who hates conflict I seem to be involved in it a lot and she’s right.  I hate conflict – it genuinely makes me ill – but despite that I refuse to act like I don’t exist.  My needs, views and desires are as important as anyone elses.  So despite what it takes out of me I stand up for myself, and in doing so for women who don’t feel able to stand up for their selves.  But it makes for a stressful life.

When I first joined my Camera Club I realized that 98% of the judges were male and that while photos  of steam trains did really well in competitions more feminine pictures of flowers for example did badly, which disadvantaged women photographers.  So I challenged the status quo, which let me tell you didn’t go down well.  One of the male camera club members said openly to me that “I prefer women like x, who just quietly get on with their photography without making a fuss”.  Yes, I’m sure you do.  However, it’s a good job not all women go about their business not making a fuss otherwise we would never have been emancipated and we’d all still be tied to the kitchen sink, the property of our husbands, without the right to vote, be educated, hold down a job or attend a Camera Club for that matter.  I’m still convinced some men mourn the old days where they had absolute power and women had none.  Four years later I’m still teased at the Club for “throwing my toys out of the pram” because some judges didn’t like my pictures.  How to not get the fucking point about gender equality and be patronizing to boot.

Because of the domination of men the only way women have their voice heard is to be LOUD which is then seen as aggressive.   Men of course can be loud and it’s just seen as normal!  Will we ever reach a time where women can gently and quietly have their viewpoint heard without having to shout?  I hope so.  And I hope I can one day put forward my opinion without feeling guilty for even having one.

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.

Being Gifted

I turned up early at my parents’ house last night to find my Mum sat in the lounge drinking a glass of wine.  My regular readers will know the background to this, but suffice to say she’s an alcoholic who is in heart and kidney failure and has recently contracted Guillen Barre Syndrome.  To say she shouldn’t be drinking is the understatement of the century.   I’m too emotionally raw to talk about the situation today so will do a post about it when I’ve had a chance to mull it over.

However, feeling…………I dunno…………kind’ve traumatized and at sea I spent the morning Googling books on “adult children of alcoholics” and “adults from dysfunctional families” (again, for those new to my blog my childhood was a bit of a train wreck) but none of them resonated with me.  I’m not lacking in self esteem, I don’t have an addictive personality and couldn’t really relate to what I see as the “woe is me” attitude of many of the self help books out there particularly if accommpanied by references to God (it doesn’t help they are mostly American and the culture here in the UK is soooo different, especially here in the north).

What I did come across, however, was an article on the adult problems faced by ‘gifted children’ of which I am one.  That led me to Google more about the subject, which was fairly revelatory.

I was born into a working class family, in a working class neighbourhood, in the 60s.  The women spent their days (and nights) chained to the kitchen sink and the men spent their evenings down the pub and watching footie.  It’s just how it was and I didn’t fit in from the get go.

I could read a newspaper and play chess by the age of 4, and was sent to school a whole year early because at least my Mum recognized that I needed academic stimulation.  There were no special programmes for gifted kids in those days, but I was given reading lessons with the headmistress and stretched as far as was possible for an inner city school.

While my intelligence was at least recognized as a very young child, what wasn’t known about in those days was that gifted children have other aspects to their personalities and psyches that differ from other kids.  Here’s a sample:

It is NORMAL for Gifted People to:

  • Have complex and deep thoughts.
  • Feel intense emotions.
  • Ask lots of questions.
  • Be highly sensitive.
  • Set high standards for themselves.
  • Have strong moral convictions.
  • Feel different & out-of-sync.
  • Be curious.
  • Have a vivid imagination.
  • Question rules or authority.
  • Thrive on challenge.
  • Feel passion and compassion.
  • Have a great deal of energy.
  • Have an unusual sense of humour.
  • Feel outrage at injustice.
  • Look for meaning in life.
  • Feel sad about the state of the world.
  • Feel a spiritual connection to life.

© The Gifted Resource Center and Lesley Sword, Ph.D

I tick every single box and it explains a lot.  I often don’t understand other people’s lack of umpf (for want of a better word).  When I’ve written posts on the inequality, abuse and subjugation of women I have always been staggered at the lack of response, because the issue makes me literally want to SCREAM.  I experience emotions so intensely there are times I feel like my skin will burst, but I’ve come to recognize that most other people don’t seem to have the depth of feelings that I do and I’ve never understood why.  At my Camera Club I’ve been told to tone down my excitability on more than one occasion (it doesn’t help that the Club is full of middle-class professional men who wouldn’t know an emotion if one bit them in the arse) and many people struggle to cope with my exuberance for life.  Which makes me sad for them if I’m honest, though I appreciate they’re less knackered as a result of having more subdued personalities.

I loved my parents and I know they loved me, but I often felt intensely alone.  I knew from an early age I had more emotional intelligence, and was more clever, than they were and it was frightening and isolating as a child to realize I had no-one to guide me.   You can imagine the role I fell into, with a permanently depressed Mother and a step-Father who was probably somewhere on the autistic spectrum (or at the very least had learning difficulties), particularly when I came home from school with report cards that read “Jak is very mature for her age”.  No shit Sherlock.  Looking back I probably took on a partially adult role in our household at about the age of 14 and here I am at the age of 50 firmly entrenched in parenting my parents.

In fairness, it can’t have been easy for them either.  I must have felt like an alien child and one with whom they had absolutely nothing in common.  Add to that my child-hood emotional volatility, introspection, creativity and constant need for stimulation and they must have felt well out of their depth.

I suppose the big surprise is that we all came out of our respective lives still loving one another, a situation which has been sorely tested in recent years.  And if I’m honest I’m proud I’ve turned out as balanced and happy as I have, considering research has shown that gifted children are more prone to depression and suicidal thoughts, coupled with the fact that mast cell disease is implicated in depression, the biggest killer of ME patients is suicide and of course child-hood emotional abuse has a negative impact on mental health.  Put like that I’m amazed I’m not sat in the corner a gibbering wreck 😉

It’s been weird to have a light bulb moment today in respect of my “gifted-ness” (is that even a word?) and how, actually, it does make me different to most people and I haven’t simply imagined that my entire life.  Just like it was weird to find out that, actually, it wasn’t normal that my hands hurt when I wrote or that I wanted to be carried everywhere as a kid because my legs tired so easily and that it was down to having EDS.  And that, actually, it’s not normal for your lips to swell when it rains or for you to itch your skin off when you get out of the bath and that was down to having MCAD.  It’s validated a few things for me and made me realize that my feelings and experience of the world is normal for me, even if it’s different to the majority of other people’s.

Anyways, I’m now completely brain dead after the emotional turmoil with my Mother last night and my neighbour’s funeral this afternoon, so I’ll shut the fuck up.  Oh, another interesting fact – highly intelligent people swear more research has shown.  Yup, this being gifted shit explains a lot 😀 .

Life at Fifty

Fifty.  It’s a bit of a milestone really and it’s weird to get my head around the fact that I probably have less life ahead of me than I have behind me.

So much has happened to me in my life that I feel like a totally different person at 50 to the me I was at 20.  At 20 I was still suffering from depression caused by my chaotic childhood and years of bullying.  My self-esteem was at an all-time low.  I had no trust in my own thoughts and feelings.  My emotions were raw and volatile and I used anger to express them as that’s what I’d been taught.  My relationships weren’t healthy.  I felt uncomfortable in my own skin.  I didn’t know who I was or what I wanted from life.  Looking back now I’m just really grateful I didn’t make any long-term, life altering decisions when I was 20 like having a baby or getting a tattoo, turning to drugs to relieve the pain or ending up on the dole.  And I think the reason for that is that buried deep inside, despite everything, was always a glimmer of self-belief.  A belief that I deserved to be happy.  That I deserved kindness.  That if my life ended up a car crash it damned well wasn’t going to be because I hit Self Destruct.  So I got some therapy, I kicked my abusive husband to the kerb, rented out my house, packed in my job and took off to see the world, working on a cruise liner for a year.

It turned out to be bitter-sweet, because that Ship is where I got the virus which lead to me developing M.E., but I’m still glad I went because it made me more appreciative of what I had at home.  My friends from childhood.  My parents.  My lovely house.  And a new-found joy in the beautiful area where I live which I think is one of the loveliest on earth.  I also met a new person who was to be my best friend for the next 20 years though we’re sadly no longer in touch.

My M.E. really took hold after I contracted Meningitis while on holiday in Africa when I was 26 and it’s changed my life in every way possible.  I’m a bubbly person, full of energy and had always been on the go, and now I was forced to lie in bed 23 hours a day for years on end feeling so ill death would have been welcomed.   It gave me a LOT of time to think.  And grow.  And changed my perspective forever.

I’m not grateful I got M.E. – it’s the worst thing to ever happen to me, but I’ll take from it what I can.  My self-belief got even stronger – it had to, because just about everyone else believed I wasn’t physically sick at all and that M.E. was some kind of depression.  My resourcefulness was tested as I lived alone, was almost totally bedridden yet was offered no help or care.  My determination was strengthened as I was denied welfare benefits, my health insurance tried not to pay out and I had to take in lodgers for years to make ends meet.  I had to find a way of dealing with my anger at being left without health-care and at my friends and family just leaving me to get on with it (parents aside).  I had to find peace in my solitude and loneliness or I would have gone off-the-wall-nuts.  I had to find joy in little things.  I had to set new, vastly reduced, goals and challenges.  I grieved for my old life.  I discovered a new life, which wasn’t the life I wanted but in which I had to find happiness or I might as well be dead.

But most of all I had to learn to love myself.  And I know that’s a term which is bandied about by happy clappy hippy arseholes these days, but I truly mean it.  I had to learn to look after myself.  To care about what I ate.  To find motivation to do my pacing schedule.  To seek out new friends, even if at the time that was only online.  To find new hobbies I could manage.  I had to find ways of dealing with my grief, anger, loneliness and isolation because if I hadn’t the illness would have won.  And the fucker wasn’t going to beat me.  Hell to-the-no!  It became obvious early on that other people weren’t going to take care of me, so I had to like myself enough for me to take care of me.

“Treat yourself as your own beloved child”  Pema Chodron

It’s funny isn’t it?  Here I am at 50, single, childless, career-less and fairly skint.  My hair has fallen out, I’ve already lost a tooth, I have a spare tire, cellulite, ‘laughter lines’, failing eyesight and an ever expanding waist-line.  Yet I am happier, more thankful, more peaceful and more joyful than I was at 20 when I was a skinny model, was head-hunted at work, had a professional footballer boyfriend and all the outward trappings of a ‘successful’ life.

If I could tell my 20 year old self what I have learned it would be:

  • Live life with intention.  Stop going through the motions and hoping life will be better tomorrow – you will never get today back.
  • Only you can make you happy and only you can make you unhappy.  Other people can help, but ultimately happiness comes from within.
  • No-one is perfect.  Mistakes are how we grow and our bad points just make us rounded human beings.  However, knowing this is not an excuse to inflict our bad points on other people.
  • The world does not revolve around you.
  • Be aware of the effects your deeds, and more importantly words, have on others.
  • Live each day to its fullest and with appreciation, even if that means lying in bed ill but appreciating that you’re not homeless on the kerbside in India.
  • Don’t stay in unfulfilling relationships.  Trust me, I have never been more lonely than when I was in an unhappy marriage.  Yes leaving was tough, frightening, stressful and ultimately I ended up broke but none of that was worse than spending another day with my ex.
  • How you look is irrelevant.  Confidence and happiness, not physical appearance, makes someone attractive.  God, I wish I’d realized this when I was younger!  Angelina Jolie is supposedly one of the most beautiful women on the planet, yet she is such a miserable cow I wouldn’t want to have a coffee with her let alone marry her.  Tubby, little Dawn French on the other hand is someone I’d love to go on holiday with…..for a month 😉
  • Say “no” more.  People won’t like you more for saying yes all the time, they’ll just take advantage and you’ll just end up exhausted and resentful.
  • Don’t hold on to anger.  It’s like swallowing poison and expecting the other person to die.  I’m not huge on forgiveness and once someone has hurt me we’re basically done forever, but I don’t hold a grudge.  Grudges hurt you, not the other person.  Being angry about your illness or your situation only makes you miserable and being sick is crap enough without that.
  • Behaviour is a choice and you can change your behavior any time you choose.  Your past is not an excuse to be a dick or a doormat.
  • Find something which brings you joy.  There will be days when you’re so poorly this is impossible, but the rest of the time I try to do something every day that I enjoy even if it’s just having a bath by candlelight.
  • Be kind, both to yourself and others.  I appreciate kindness more than any other quality in a human being and when someone is kind to me it makes me feel good.
  • Don’t put up with other people’s bullshit. I’m not prepared to make myself feel small or stupid so that other people can feel superior.
  • There will always be people who know more, are prettier, more altruistic, cleverer, richer etc. than you.  This does not make them better, just different.  We are all equal and unique.
  • Try not to be so judgemental.  You hate it when others judge you.
  • If you don’t have something nice to say, say nothing.
  • You are too serious.  Fuck the washing up and the laundry and have more fun for crying out loud! 😀

Of course, my 20 year old self wouldn’t have listened.  For most of us it takes years to grow into ourselves, to find out what makes us happy, to gain self-confidence and self-belief and to ultimately feel happy in our own skin.  And when we get there to recognize that we’ve got there and be grateful.  I wonder what my 100 year old self will say to my 50 year old self?  Probably that you have a lot to learn 😉



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.


I just want to be liked

I know myself well enough by now to have a grasp on my good personality traits and my bad, and one of my worst flaws is being a people pleaser.  My Dad always preferred my brother to me, I think fundamentally because he was a misogynist who thought women were a waste of space, and he criticised me constantly.  It didn’t matter that my brother only managed one O level and I got ten, plus three A levels and post grad in Business law, because my brother was a professional footballer and in my Dad’s eyes that was all important.  It didn’t matter that my brother possessed no other skills while I had 1000, because I was a girl and as far as he was concerned I could never pass muster.  For years I tried and tried to get my Dad to praise me, to tell me I was worthy and that he was proud of me, and failed miserably.

You can imagine the implications this message had on me as a child and the impact it had on my relationships with men in the future.  I chose partners whose words and deeds re-enforced that I wasn’t good enough and I believed them.  Add to this years of being bullied by older girls at school and my self esteem was in tatters.

I didn’t meet my now best friend until I was in my mid thirties and she can’t believe I was ever lacking in self belief or self confidence.  I’ve worked really hard at undoing the harm inflicted on my psyche by the bullies, my Dad and my Exs and for the most part I’ve done a good job.  But one trait has been left behind and it’s my tendency to need to defend myself when criticised.  And it drives me bonkers.

Example:  before I started wearing wigs, I’d washed my hair one day, not bothered blow drying it, and gone out in my garden.  My (bald!) next door neighbour, who’s a gobby little shit, pipes up “what the bloody hell have you done to your hair?!”  Now, what I should have said is “well at least I’ve got some hair!” but instead my reply was “I’ve just washed it, why?”  to which he replied “well it’s a right fucking mess”.  Cheers for that.

I’ve found that I try to defend myself on my blog all the time.  When someone starts a comment with “I disagree……” I’m never sure what my reply should be.  What I want to say is “if you have a differing opinion write your own blog and express it there, because this is my blog and I can say whatever the hell I like without having to justify or explain myself to you” but I don’t cos I don’t want to upset people.

We all have a need to be liked but if the price tag is that we don’t feel we have the space to simply be ourselves, or that we have to accept abuse or be denied affection then the cost is too high.

As I grow into my mature self I am getting better at just telling people to piss off, even if they don’t like me as a result, but it doesn’t come easily.  I made it perfectly clear, in a polite way, to my neighbour who told me I looked old and disease riddled that her comment was unacceptable and she needed to apologise, yet she has not and now she isn’t speaking to me, like I’m the one who’s done something wrong.  And that’s OK.  It makes it awkward to live right next to her when we don’t speak, but being nasty then not apologising is her choice and I have no influence over that.  And in future, if someone leaves a comment on my blog that is irritating or frustrating I simply won’t reply to it.  I have to stop justifying myself to others or worrying about what other people feel, and worry more about how *I* feel.  Which feels selfish but I think is necessary.

I’ve never really been a girlie girl.  I’m not pink and fluffy and am quite blokey in my approach to life, which I know some women find abrasive “(get over it” my new self would comment 😉 ), while others feel the need to challenge me and make it obvious they don’t like me (not sure what the intention is there – maybe they think I’ll buy a new personality on Ebay, a nice pink fluffy one they find less irritating).  All of which washes totally over my head because I’m finally at the stage where I quite like myself, warts and all.  I’m fact, if I could just stop trying to justify myself to other people I’d actually be fucking awesome in a ranty, hormonal, lacking in table manners and personal hygiene kind’ve way 😉  Actually, when I think about it, if I didn’t know me I’m not sure I’d want to know me, but I’m stuck with myself so maybe my next step in personal growth is to learn to bathe more.