Category Archives: Personal growth

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.

Changing perspectives

Being chronically ill has fundamentally changed me as a person in so many ways it’s impossible to write about.  At the age of 26 I was already on a journey of growth and discovery but spending 10 years stuck in bed feeling every day like I was dying didn’t half speed the process up.

I had a chaotic childhood where conflict was settled by blazing rows and chucking stuff.  So that’s what I learned.  This only happened inside my home, though, not outside – God forbid anyone on the outside should know my family were dysfunctional.   To the outside world we showed politeness, courtesy and respectability, but the second the front door was shut all hell broke loose. It made me quite mixed up as a teenager as I’m sure you can imagine.

I remember the day I stopped rowing with my boyfriends.  I was 23 and in the middle of yet another argument over something ridiculous.  And I remember thinking to myself “what the fuck are you doing?  This is exhausting.  You love this person and you need to stop.”  So that’s exactly what I did.  I said in the middle of the row “I love you, can we just stop this please?” and with relief he agreed.  We then calmly sat down and discussed the issue properly.  I can probably count on one hand the amount of arguments I’ve had since.

The boyfriend I was with when I got sick with M.E. in 1994 was ambitious.  He was money driven, wanted a big house, expensive car, holidays abroad, designer clothes……..and I tagged along, even though I didn’t really care about any of it.  I didn’t have the confidence to say I wanted a quiet, unassuming life and that I thought all the trappings which came with wealth were pointless.  Spending 10 years unable to get dressed or leave the house let alone go abroad on holiday only served to re-enforce to me that stuff is just stuff and has no meaning.  A cuddle, or someone cooking me a meal, means more to me than any designer handbag.  Needless to say we parted ways and he ended up in London as Editor at Sky news with the life he wanted, and I ended up in a little cottage in the country with the life I wanted.  His job and lifestyle became so stressful it gave him a stroke at the age of 39, but that’s a story for another day.

In my early twenties I was very image conscious.  I worried if I gained 3lbs, spent hours at the gym getting my stomach flat and my butt curvy and never left the house without my slap on.  The stress I put on myself was ridiculous and none of it was for me.  I was happiest slopping about in my pjs or joggers and being sick enabled me to do just that.  And I haven’t stopped 😉  I only buy clothes when it’s critical and by critical I mean that my jeans have a hole in the arse.  I bloody hate clothes shopping and spend my life in leggins (in which I both sleep and go out, often the same pair for days on end), wellies (rain boots) or walking boots (even in summer) and either a t-shirt or a jumper quite often with my lunch spilled down the front.  I think I’ve worn makeup twice so far this year and had my nails painted once (and even that was too much effort).  It’s so incredibly freeing to not care what the world thinks of me and, while I know that kind of body confidence only really comes with age, I wish it were something we taught our young girls.

I have a friend who is 24 and overweight.  I photographed her a couple of years ago and she was mortified I put the images on facebook.  She agreed to be photographed but I think she thought I’d somehow airbrush them to make her look 2 stones lighter.  I have no intention because she is beautiful as she is and that’s all I see – her beauty.  I want to shout at her for not recognizing that and for wasting her life hating herself.  Here are her choices:  lose weight or embrace her weight.  The only other option is spending a lifetime hating her body – the body that is keeping her alive, enabling her to walk, to laugh, to love her fiance, to do up her first home and to have fun with her friends.  Why would someone choose that?  I’m nearly a stone (14lbs) overweight which when you’re 5ft nothing is quite a bit, but it just is what it is.  I can’t diet with my hormones the way they are, and I certainly can’t exercise it off, so I just accept it and buy bigger leggins 😉

I don’t watch a huge amount of telly these days.  I find it all bizarre.  The adverts selling me shit I don’t want or need.  The news which makes me want to hang myself.  The reality TV with people shagging and swearing and getting pissed every night of the week.   It’s all so LOUD it hurts my brain and is absolutely irrelevant to my existence.  I don’t do Twitter or Instagram or What’s App – what a fucking waste of my precious time and energy.  I am on Facebook but I have less than 100 ‘friends’ and only follow half a dozen of those, mainly my family who now live in Australia,  friends in other countries or very poorly friends who aren’t up to visitors in real life.  That’s because I actually see and speak to everyone else and don’t need to be talking to them on the sodding computer!

The biggest thing I wish someone had taught me as a young girl would have been to listen to my gut.  My gut tells me a lot of things which I, to my cost, ignore.  It told me I was in the wrong job and the wrong relationship.  It told me I was living in the wrong place surrounded by the wrong people.  I was baffled as to why buying stuff didn’t fulfil me and why I woke up every day fundamentally miserable.  My gut got physically sick when people treated me badly, were rude, dismissive, mean or discouraging yet I allowed them to remain in my life.  It took getting really ill to give me the courage to explore who I am, to stand up for my happiness and to live authentically, which was a bit extreme but I wasn’t taking note of the small clues so God chucked a brick at my head instead and that did the trick 😉