Save the one who’s quiet

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

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

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

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

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

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

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

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

Stevie Smith



That darned F word

Arrrrgghhhhhhh!!!!!  I’m glad I’ve got that out of my system because the current trend of confusing “chronic fatigue” with M.E. (I’m not using the term ME/CFS because I don’t have CFS) makes me want to scream.

A man wrote a post on the M.E. Association’s Facebook page this week saying that for the last month he’d been getting up at 7am, going to the gym to lift weights, having a steam session, then going back in the gym to lift more weights and do some cardio and was feeling much better.  There was understandably outrage in the comments section.  For a start most people with M.E. struggle to surface out of bed before 10am and any kind of extreme heat, like you’d find in a sauna, would floor them.  Our muscles do not function correctly and lifting my toothbrush can be beyond me some days – lifting weights on a regular basis would be absolutely and utterly out of the question.   Whoever diagnosed this person with M.E. needs to be sacked.

Ehlers-Danlos syndrome can cause significant fatigue, but that doesn’t mean you also have M.E.  That’s because M.E. has nothing to do with being tired, and lots to do with being ill, following trivial activity.  And by trivial I don’t mean a session at the physio (I wish).  I mean having a shower or getting dressed.

When you get the flu (the proper flu, not man-flu or a cold) you lie in bed with every muscle aching and feeling like cement.  Your brain pounds with cotton-wool fog, light and sounds are too bright and too loud, your throat is swollen and sore and walking 10 steps to the bathroom is like tackling the north face of Everest, after which you collapse back into bed feeling like you’ve been battered by a hammer-wielding maniac.  That is what M.E. feels like………..every second, of every day, of every week, of every month, of every year.  If you can call it ‘fatigue’ at all it’s an immune-induced ‘fatigue’ that is crushing and stops you doing the normal tasks of daily living every day.  It is not tiredness after activity, it’s feeling flu-like with associated all-emcompassing heavy exhaustion beyond most people’s understanding of ‘tired’.  And, more importantly, it is not relieved by rest.  So, after I’ve done something I shouldn’t – like a little bit of gardening – I wake the next day feeling poleaxed.  I spend the day resting in a foggy, poisoned stupor and wake the next day even more poisoned, exhausted, achy and foggy than I did the day before.  Each person with M.E. is different, but for me my symptoms peak 48 hours after the activity and finally abate after about 4 days (by which time I’ve done some other task of daily living and the cycle starts all over again).  And many forget that mental over-activity brings on the same symptoms.  If I’m on the computer for too long I start to get a sore throat, feel dizzy, nauseous and generally feel fluey and unwell.

The cardinal feature of M.E., I am sick of saying, is “post-exertional MALAISE”.  I’m not even sure ‘fatigue’ is mentioned in most of the diagnostic criteria.

The problem arose when M.E. was re-branded as Chronic Fatigue Syndrome.  This became confused with Chronic Fatigue which is a symptom suffered by millions of people with a hundred different diseases from insomnia to cancer, and the general population on a Friday afternoon!  IMHO, ‘hypermobility’, ‘hypermobility spectrum disorder’ and ‘Ehlers-Danlos Syndrome’ suffer in a similar way.  People with generalized hypermobility query whether they have HSD or EDS, people with HSD query whether they have EDS (some do, just like some people with CFS have M.E., but then equally some don’t) and EDS becomes a diagnosis that few qualify for even if they have it, just like true M.E.  It’s all such a bloody mess.

“Who cares?” I hear some of you say, “it doesn’t matter what you’re diagnosed with as long as you are diagnosed and get treatment”.  But actually, it matters a great deal and here is why:

  • If you are diagnosed with M.E. when your fatigue is down to another reason, such as Lyme or Lupus, you won’t receive the treatment you need for the actual disease you have.  There is no treatment for M.E., so other than being offered some CBT to adjust to living with a chronic illness you will be left to rot.  That is not good if you have fatigue which could be treated.
  • If, like me, you are unlucky enough to have both M.E and hEDS you sadly will not be able to tolerate the physiotherapy exercises needed to treat your hEDS.  If I hadn’t had my M.E. diagnosis I would have pushed myself to do the hydro and physio recommended for my hEDS and made myself sick as a dog – possibly even causing a permanent relapse from which I never recovered.  If, however, you have simple ‘chronic fatigue’ doing the recommended physio for hEDS might help – at the very least it wouldn’t lead to a deterioration in the condition.  Being correctly diagnosed is vitally important.
  • Any research carried out on an incorrectly diagnosed population is pointless.  If research on M.E. includes people who actually have simple ‘chronic fatigue’ and they get better by lifting weights, then all people with M.E. will be deemed to be ‘curable’ by lifting weights, when actually lifting weights would be hugely damaging.  Similarly with hEDS, if under the new criteria someone like me is classed as having HSD when I actually do have hEDS I will skew any research into HSD because I don’t in fact have it.  And research into hEDS will only include the most severely affected which skews research into hEDS too.  I didn’t start dislocating my joints until I was in my forties, so I wouldn’t have qualified for a hEDS diagnosis when I was younger despite having non-joint-related symptoms from childhood.

There is an alarming trend in the M.E. world for researchers to be studying ‘fatigue’ and energy production when the fatigue of M.E. is a by-product of immune dysfunction, just like it is when you get the flu.  The fatigue experienced when you have flu is just a symptom of the disease, not the cause.  It all feels like a huge waste of time and resources and will lead to yet more blind alleys (remember I’ve been following research into M.E. for 20 years now).

The bottom line is we urgently and desperately need a test to distinguish M.E. from CFS and chronic fatigue, just as we urgently and desperately need a test to distinguish hEDs from HSD and generalized hypermobility.  I know clinicians have tried their best to differentiate these diseases using symptoms as a guide but it doesn’t work, particularly in hEDS where symptoms can appear or increase as you age.

And speaking of age, there has not been one single study to my knowledge on older people with M.E. or older people with hEDS.  Research always tends to focus on children and young adults for reasons I can’t work out.  We desperately need studies on the effects of long-term M.E. on the over 50s, and we absolutely need this age group studied in hEDS as it is not uncommon for symptoms to suddenly appear or increase when you hit forty particularly in women. Even a simple survey on the over 40s undertaken by the EDS charities would be better than nothing.

Whichever bright spark decided 20 years ago to rebrand M.E. as CFS has a lot to answer for and if I could get my hands on them I wouldn’t be responsible for my actions.  And in 20 years time I may feel the same way about the current clinicians who rebranded hEDS and HSD!

Fear & Worry

Over the last couple of decades of being sick I’ve ‘met’ (mostly online) hundreds, if not thousands, of people.  Many of them are beside themselves with worry and fear and I want to say to them “mate, take a chill pill” but that’s because I’m much further along the road than they are in dealing with chronic illness and have realized the futility of worry and fear.  I’m not trying to tell anyone how to feel, but just thought I’d share my journey with these emotions and how I managed to end up in a place of relative calm.

The first two years I had M.E. I was worried sick.  I couldn’t work, my finances were a mess, my relationship was falling apart and although my Doctor kept telling me I’d be better in two years because everyone with M.E. got better in two years (!), it wasn’t happening.  Then I got meningitis and all hell broke loose.  I thought I’d been sick before but it was nothing in comparison to the living death of severe M.E.  Now I worried every day that I might die, and nearly did.

After 4 years, I realized I couldn’t live with the worry about my relationship falling apart for another second.  So I dumped my boyfriend.  It was painful, but I needed to concentrate on my needs not live in fear every day that he would find someone else or dump me.  The worry was exhausting and I didn’t have the energy for it – I was too busy trying to find the energy just to breathe in and out.

After year 6 of being bedridden, and worrying every day I might die, I finally decided that dying would be a relief.  I was so tortured by my symptoms that I actually prayed to not wake up in a morning.  I stopped fighting, and stopped worrying, and that’s when I started to recover.  Weird huh?

My biggest fear M.E.-wise these days is that I’ll relapse and end up bedridden again.  I honestly don’t think I could live through that twice, so my internal dialogue tells me I don’t have to.  If it comes to that I’ll just kill myself and save myself the torture.  So now I don’t worry too much because I have an opt out.

My Ehlers-Danlos is currently the least of my worries.  Yes it’s painful and can make me miserable, but at the moment it’s liveable with.  If I were to think about my old age (which at nearly 50 isn’t that far off!), living in poverty, becoming increasing disabled and having no help or care I’d be worried stupid, so I simply don’t think about it.  I have enough on my plate getting through the day without panicking about a future which is at best uncertain – I could get run over by a bus tomorrow and all that worry about the future would have been for nothing.

My Mast Cell Disease, on the other hand, is a different kettle of fish.  I live every single day in fear of anaphylaxis and ultimately death.  I have to take H2 antihistamines for my GERD, without which I am suicidal with pain, yet after every single tablet I hold my breath for an hour waiting to have a reaction.  I’ve taken H2s before and tolerated them fine for 18 months before my body rejected them, so it’s not an unreasonable fear to have.   Each time I take a pill my internal dialogue goes something like this:

What if I have a reaction?  What if I can no longer tolerate them and have to live with horrendous acid reflux?
Well Jak, what if you do?
But I can’t live with horrendous acid reflux!
You might have to.
But I CAN’T.   It’s too painful!
You haven’t tried PPIs before, maybe you can tolerate those instead.
Yes, you’re right, maybe I can.
So if you do become allergic to the H2s again, there’s always the option of the PPIs.
Yes, I’m comforted by that.

By which time at least half and hour has gone by, and I realize I’m not having a reaction and I breathe a huge sigh of relief and get on with my day.  It is tiring though, living with that level of fear and having to be strong and give myself a stern talking to every day of my life.

The thing about worry and fear is that, for the most part, they are absolutely futile.  Worrying about having a relapse won’t stop me having a relapse.  Worrying about having anaphylaxis won’t stop me having anaphylaxis (in fact mast cells love stress, so it actually increases my chances!).  When I first got sick I worried about money, but here I am two decades on and I’ve managed.  I worried when I dumped my boyfriend that I’d be lonely, and I am at times, but at others I’m glad I’m single and can do my own thing – I honestly don’t think I would have made the recovery from M.E. I have if I were still in a relationship because other people’s needs take too much energy.  I worried when I was diagnosed with hEDS that the illness would progress and I’d end up in a wheelchair, and the illness has progressed and while I’m not in a wheelchair yet I am a mobility scooter user and I cope.  I worried when I was ill-health retired from work that my life was over, yet here I am still meeting new people and doing new things and if I’d been working full-time I would have been far too busy to take up photography, without which my life would lack passion.

It’s natural to worry but you can’t let it take over your life.  None of us, healthy or sick, knows what the future holds.  I bet the day PC Keith Palmer went to work he didn’t expect to be stabbed to death by a terrorist.   Living each day as it comes is all we can realistically do.  If it’s a good day we cherish it, if it’s a bad day we do our best to get through it, knowing that tomorrow might be better.  After a decade of being bedridden I never thought I’d be driving, walking, owning a dog, writing a blog, have moved house, be winning awards for photography……..or be happy.  In the bleak, dark, wee hours of my worst nights I never imagined for a second that I’d be living a rich, fulfilling, joyful life……….yet here I am.  Anything is possible.

Weekly roundup

I really must make more lists.  As I’m going about my week I think to myself “I’ll tell my readers this on Sunday” but when Sunday comes I can barely remember what I did an hour ago let alone on Tuesday 😉

I do know that I spent the whole of Monday in bed with a migraine due to my attendance at the Photography Salon last weekend.  It was to be expected but still sucked.

The good news is I am feeling so much better since starting the Spatone iron water for my low ferritin and making a concerted effort to include iron-rich veggie foods at every meal and snack.  When I first tried the Spatone it gave me awful nausea, stomach pains and a bit of a runny bum (iron supplements are notorious for giving people gippy stomachs), so I took a break then restarted it a little bit at a time, working up to a full sachet.  I now have no side effects and the daily dizziness I’ve had for months has totally gone 🙂

After 16 days my cold is still lingering.  I’m not alone – a friend at Camera Club also has the bug and has been coughing and sniffling even longer than me.  I woke this morning and my runny nose finally seems to have dried up, only to be replaced by the raging sore throat which started the whole debacle.  WTF?!  I take Sambucol daily (which contains both Vitamin C and concentrated elderberries which are high in mast cell stabilizing quercetin), with added vitamin C in my Spatone, yet the bioflavanoid doesn’t seem to be helping my immune system fight the good fight.  On the plus side my hive outbreak, brought on by my mast cells having a virus-induced hissy fit, has finally cleared up though I did have to use steroid cream on my butt for a week.  For anyone who wants to know the technical ways in which mast cells react to viruses see Lisa’s article here.

I was given a garden centre voucher as a “thank you” when I left my volunteer job as compositor for our Church newsletter recently, so on Tuesday my bezzie and I had lunch out and a potter round a Nursery.  I bought 11 plants which, with my voucher, only cost me £8 🙂  I now have to find the energy from somewhere to actually put them in my garden!  I love gardening but plants are now so expensive I can hardly ever afford to buy any and actually doing any gardening cripples me :-/

I finally exploded over the situation with my 90 year old next door neighbour this week.  She fractured her hip last year and now has great difficulty walking let alone doing anything else.  She has two children who are about as much use as a chocolate fireguard.  My neighbour agreed to home care, but they were terrible – often turning up an hour late and sending someone different every week so that no-one ever knew what needed doing.  It rightly drove my neighbour nuts so she cancelled them.  Her house isn’t just filthy, it’s squalid.  She only has a bath 4 or 5 times a year.  She has a skin condition, which means she has weeping, pussy, bleeding blisters constantly.  She wears blood soiled clothes and sleeps in a blood soiled bed which again only gets changed 4 or 5 times a year.  Her kitchen is so dirty you can hear your feet sticking to the floor when you walk in there.  No-one seems to be helping her and it makes me furious.  It’s now so bad I feel physically sick when I visit as her house is so disgusting.  So on Wednesday, when I was paying my cleaner £10 an hour to clean my house, I went over to my neighbours and cleaned her oven. Four hours and a lot of elbow grease later it’s still only 50% clean but at least it’s something. Her hob is now spotless, but sitting on it is the most disgusting pan and casserole dish you’ve ever seen.  They’re beyond cleaning, so I’m buying her some new ones this week even though I can barely afford it.  She can no longer reach her wall units, so there is food and crockery all over the counter tops which makes cleaning those impossible.  Why aren’t her children sorting all this out?!!  She also has a huge apple tree in her garden, and all the apples have fallen off onto the lawn where they have lain rotting for months.  So for the past two days I’ve been picking up apples and have so far filled 5 dustbin bags which I’ll have to take to the tip.  Her only crime is being old and sick and unable to care for herself.  The District Nurses know about her, Social Services know about her yet she is still left in filth – it’s inhumane.

Yesterday I aged 5 years. I was helping the neighbour mentioned above walk to a seat in her back garden, looked round and Bertie (who had been right next to me) was nowhere to be found.  He has a tendency to wander up the village, so I thought he’d be on the verge at the front of the house. Nope. I called him. Nothing. I then spent 20 minutes running up and down the village like a loony toons shouting his name and couldn’t find him.  I always fear that, being a cute Pedigree, if he’s loose in the village someone going past in a car will snatch him. I was crying and terrified.  I was too exhausted to walk another step, so decided to get my neighbour back into her house so that I could get on my scooter and search further afield. I opened the back door, and there was the Bertster in her kitchen – he had pulled over the waste bin and was busily trying to eat the rubbish. I didn’t know whether to kill him or cuddle him! I have no idea how he got in the house as the back door was shut and why did the stupid git not bark when I was shouting for him if he couldn’t get back out?!

I’m now off to spray my throat with Ultrachloraseptic and am wondering if it’s OK to eat ice cream for breakfast!


I am not my disease(es)

I have occasionally been accused by some people who read my blog that I don’t know my stuff.  That I don’t research enough, or read enough, or belong to enough online groups or keep up to date with the latest goings on.  And to a point they’re right.

I have a life y’see.  Outside of my diseases.  I actually like to talk to people in the ‘real world’.  I love being outdoors, watching the local wildlife through my long camera lens.  I spend time in the bath reading Photography magazines.  I waste hours tinkering in my miniscule garden.  There is nothing nicer on a warm day than walking Bertie down by the river and trying to sneak up on the Heron to capture him on film (I haven’t managed it in 3 years but I’m always hopeful 😉 ).  My guilty pleasure is watching Teen Mom on the telly and I’m currently addicted to Broadchurch.  Sometimes I simply lie in my bed and do absolutely bugger all but listen to the birds singing outside and the sound of my dog snoring contentedly beside me………. and it’s heavenly.

I don’t belong to Twitter or Instagram, Snapchat or WhatsApp and I only have 80 Facebook friends (I consider a ‘friend’ to be someone I actually know, not some random stranger I met online last week).  I’m not on any groups or forums.  I don’t have time.  I’m too busy having fun and trying to remain a fully rounded human being despite my physical and mental limitations.  I’m too engrossed smelling the early spring flowers, watching the clouds drift by in the sky and cherishing the sound of the returning Swifts and Lapwings.  In other words, belonging to the real world.

I know I’m lucky to be well enough to enjoy life outside the house, but even during the 10 years I was bedridden I didn’t spend every waking second in cyber space.  I was too busy then trying to get better – resting, meditating, soaking in epsom salt baths and juicing home-sprouted pea shoots.  And it worked (thank you God), at least to a point.

Yes there are people online much more informed than me, who are surgically connected to their computers and available 24/7 (when do these people sleep?!).  They know everything about everything yet are, amazingly, still sick, just like me.  But less happy and content I’d wager.  It can be really stressful being online, and the reason I left all the forums and groups was that some people are just argumentative, negative, rude pillocks and they used to wind me up to bursting point which wasn’t good for my health.  Personally, I would find spending hours a day reading complex research papers boring as all hell and I have no intention of wasting the little mental energy and clarity I have doing that – if and when a cause for M.E., or the gene for hEDS, or the cure for MCAD is found it’ll be splashed all over the news so I won’t have to belong to 20 different Facebook groups to hear about it.

I am more, oh so much more, than my diseases.  I don’t need to know how my genes express themselves (I just know they seem to be angry at me 😉 ), or the fact there have been 5 different studies since Christmas which claim to have found the cause of M.E. (they can’t all be right and I’d bet my life none of them are!), or how physiotherapy is the be all and end all of EDS management (“bollocks” is all I have to say to that).  So I cherry-pick the information I feel is most relevant to me and the forums which are most useful to dip into with specific questions and ignore everything else.  The balance of knowing enough about my diseases to manage them (there is no magic cure or even effective treatments) and inform medical staff about them, yet not so much that they rule my every waking moment works for me, and means that my life is lived in tandem with my illnesses, not consumed by them.

Weekend roundup

And what a weekend it’s been.  I’m exhausted but with a huge sense of achievement, so that’s OK then 🙂

Sat and Sun I attended my first International Photography Salon.  Once a year it’s held in Cumbria and our Camera Club are amongst the hosts, so I was one of the volunteers who helped run the event.  I had to be up at 6am both mornings, dressed, fed and take Bertie to my parents for 7.30am.  I was then collected by some friends in their car and we travelled for an hour to the venue.  By the time we arrived I was knackered and it wasn’t even 9am 😉  The day then finished at 5pm, we travelled the hour home, I had to collect Bertie, drive another 20 minutes back to my house, then start making my dinner.  Needless to say I ate it half propped up in bed as I was so shattered by that stage, and in so much pain, I couldn’t even sit upright!

My job both days involved being on the computer, checking the image being judged matched that shown on screen.  Trust me when I say 6 hours of that each day was mind boggling!  Thankfully I had my wing-man John to help out – I tended to the do the morning shift when I am at my most mentally alert and he did the late afternoon shift when I am usually in bed because I have conked!

The weekend was made even harder by the fact I am still not over my cold.  Ten days now of a runny hose, hacking cough and sore throat, on top of which having a virus has caused my mast cells to ramp up a gear or three and I have a large outbreak of hives on my backside.  Lovely.  However, I coped really well all things considered and am actually rather proud of myself 🙂

As I was only in the admin team and not actually judging, I was allowed to enter some images of my own into the Salon.  I didn’t hold out any hope, as this was my first International Exhibition and there were 15,000 images judged from all over the world.  *However*, I was delighted to discover yesterday that 3 of my images were accepted into the Exhibition and not only that but the image below received an Honourable Mention in the Open Monochrome (ie black & white) section.  OM-flippin-G!!!

An Honourable Mention means that the image scored maximum points but wasn’t selected for a medal.  Still chuffed to bits that this image made the final 20 out of 1,400 images but, and the chap in the photo who is our village grass cutter, will be tickled pink 🙂

I don’t have any results from today, though am not expecting to get anywhere with my colour images.  Mind you, I didn’t expect to get anywhere with my Black & White image either so who knows lol!

Needless to say it will probably now take me several days of bedrest to get over my humongous weekend, but I’m still glad I was able to do it.  I’m sure at events like this where I appear absolutely and utterly ‘normal’ my Camera Club mates must think I exaggerate my illnesses.  Of course, they didn’t see the TENS machine on my back, the brace on my leg, the acupressure sickness bands on my wrists, my neck wrap or my support stockings as they were all hidden under my clothes.  They weren’t with me for my slight mast cell reaction after breakfast today or in the early hours when I couldn’t sleep for hip and back pain.  They were also unaware of the several times over the weekend I felt like I was going to faint, or puke, or both and the fact that at one stage both my arms went completely numb.  And in some ways I’m glad they’re not aware, because that means for just a few hours I can live like a ‘normal’ person and do things a ‘normal’ person does.  I wish, however, that my ‘normal’ friends could endure the payback for me this week because I know it’s going to SUCK!


The term ‘gaslighting‘ has become popular in recent times and, to a degree, I associate with it.  My childhood was weird by anyone’s standards, yet to the outside world my life was tickety boo.  My friends all told me they wished my Mum were theirs because “she’s lovely” and everyone and his dog liked my Dad who was a “grand fella”, but they didn’t have to live with my Mum’s mental health issues, addictions and poor parenting skills or my Dad’s volatile moods, complete lack of parenting or (now suspected) autistic tendencies.  For example, we had a dishwasher fitted in our kitchen and needed a hole putting through to outside for the waste pipe.  My Dad started stabbing at the wall with a kitchen fork and thought he could make a 3″ diameter hole through solid sandstone with it – it’s not exactly rational behaviour.  In response, my Mum chucked a mental and threw an entire shepherd’s pie, in its glass ovenproof dish, at his head which, if it had hit him, could have killed him.  I went up to my bedroom and read a book to escape the insanity – it was just an average week to me.

Although my childhood didn’t fit the strict definition of ‘gaslighting’ I still identify with the warping of reality and the constant pretence by my parents that everything was fine, when it was anything but.  As a child you don’t know this though – you just know that you’re miserable and confused and worried but don’t know why.  You’re unaware you’re living in a dysfunctional household or that your parents can’t cope or have mental health issues.  I knew they both loved me to bits, but their behaviour made me very, very unhappy so then the definition of being loved got warped too.  As a child this is all totally confusing and you simply can’t get your head round it.

I married a man who truly gaslighted.  He would argue with me that black was white and red was no colour at all.  He made me doubt my sanity, my perception and reality.  He would flirt outrageously with other women, then tell me I was being paranoid when I got upset about it.  He isolated me from my friends and family, constantly told me I looked like crap or talked shite, belittled me in front of his friends who all thought he was hilarious, spread rumours that I was mentally unstable (which after 4 years with him I actually was!).  This guy made me question everything about myself, but in such a subtle and manipulative way that I had no idea it was happening.

I had a very interesting conversation with my best mate recently about the fact several of my close friendships have died a death in recent years and it made me realize that the way these women have chosen to fall out with me also feels gaslight-y.  For example, my dearest friend of over 2 decades had become distant.  I could only ring her at certain times, she didn’t confide in me the way she used to and she had a family member she’d become extremely close to who had obviously taken my place.  After not hearing from her for over 3 weeks I wrote a blog post, the gist of which was that I feared for my mental health after my mum dies as we speak every day, my best friend wasn’t making time for me and I’d love to make some new friends to fill the void my Mum will leave when she dies (she wasn’t a raging alcoholic then and we had always been super close).  I didn’t feel I said anything bad and didn’t think my friend would read it as she was too busy to even text me let alone read my blog, but she did read it and went ballistic.  Within 24 hours her husband and son had unfriended me on Facebook and our 20 year friendship was over.  I was made out to be an awful person by her whole family, when she was the one being a shit friend and all I’d done was be honest about the situation and say that I felt isolated and lonely.  I mention my other closest friend in the post, who also read the article, and was not in the least bit offended by it.  In fact we had an honest discussion about our situations and both agreed that although we love our friendship we’d both like more friends as we live some distance from each other and can’t get to see each other as much as we’d like.

The neighbour who was nasty to me recently which I wrote about at the time hasn’t spoken to me since.  So she tells me I look old and miserable not once but 3 times despite knowing I was upset by her comments, then takes the hump and is now no longer speaking to me.  WTF?!

Of course, my biological Dad was the master manipulator.  He wasn’t very involved in my life but sent me to Coventry, along with the rest of my paternal family, when I asked someone else to give me away at my wedding (which I wrote about here).  So he’s a shit Dad but I am the one who is treated like a Leper when I’m honest and tell him he’s been a shit Dad.

In these people’s minds, they are in the right and I am in the wrong.  They can’t admit to themselves that they’ve actually not been the best parent/friend/husband so I am made to feel at fault because it’s easier to blame me than to face up to their own behaviour.  As the gaslighting article reminds me, it’s impossible to reason with them or to get them to take responsibility for their behaviour.  They truly believe you are the one being unreasonable or nasty, not them.

The gaslighting article describes how the author herself survived her childhood, and in reading it I realize that that’s how I survived too:

  • By being defiant and not accepting my parents’ behaviour was normal or healthy – I knew it wasn’t.  “Being defiant does not make you difficult. It makes you resilient.”
  • Accepting that acknowledgement is not on the cards.  I knew my Dad would never in a million years admit he’d been a rubbish parent or that he’d made a mistake in blaming me for our lack of relationship.
  • Letting go of the wish for things to be different.  I didn’t try to change my Dad’s or my Friend’s minds when they stopped speaking to me – I just wished them the best and let it go.  I held on to the knowledge that I’d done nothing wrong other than to react to the pain these people had caused me and that was healthy and normal behaviour.  It was up to them to apologise and take responsibility and that was never going to happen.
  • Detaching from the gaslighting.  In other words, holding on to what you know is reality even when the person is trying to persuade you that black is white.  It’s really hard to do as a gaslighter makes you question your own judgement but I know in my heart I’ve done nothing wrong other than react to a situation caused by someone else and if the other people involved can’t accept that or wants to blame me for their mistakes that’s their choice and there is nothing I can do about it.

I’m a very black and white person – I’ve needed to be to survive a life which has involved altered perceptions of reality.  I needed to hold on to my versions of right and wrong behaviour and to not deviate from them, because if I had deviated I would have lost my grip.  I’m also totally intolerant of bullshit.  I don’t give people the benefit of the doubt because in my world if you like (let alone love) someone you aren’t cruel, nasty or horrible to them – end of story.  The people in your life should always lift you up not put you down.  My best mate is a very honest person and I know she always tells me the truth, but she does it in a way which isn’t hurtful or critical.  I can’t be doing with people who are nicey nice all the time – they’re just blowing smoke up your arse and telling you what you want to hear, which is another way of altering reality.  But when people are honest they have to be honest in ways which protect the other person’s feelings – blurting out “yes, your arse does look big in that” is hurtful.

None of us are perfect.  I know I’ve said and done things which have inadvertently been hurtful, but I’m the first person to apologise when that happens and to acknowledge that I’ve made a mistake.  When my closest friend was upset by the blog post I wrote I emailed her to apologise, even though she was the one being a rubbish friend and it was her behaviour which had in part led to the post.  Needless to say she’s never apologised for upsetting me.  It’s important to take ownership of our behaviour and acknowledge the impact our words and actions have on others.  Even when I had my famous melt-down on Christmas Day, which I felt was in no way my fault, the first thing I did when I got back to my parents’ house was apologise to both of them.  Yes I was justified in blowing up, but I went too far and said things I shouldn’t (even though they were actually true!).

Now I’m older and, hopefully, wiser the thing I value most in any of my relationships is kindness.  When you’re kind to people you can’t go far wrong and when people are being un-kind it’s easy to recognize.  However, I am not kind to the point of being a doormat.  During the conversation with my best mate recently she said “for someone who hates confrontation you still seem to have more than your fair share” and I realize the reason for that is that some people mistake my kindness for weakness, then when I confront them with the fact that their behaviour towards me is shabby they can’t handle the fact I am standing up for myself.  Yes I try and see all sides of the argument and the other person’s point of view but I don’t make excuses for hurtful behaviour and I expect the people in my life to take ownership of their role in any discord.  If they can’t do that I’m not afraid to call them on it or to ultimately walk away.  Hand on heart I can honestly say that I have not missed the people who have fallen out with me for any second of any day – in fact, it was a relief to stop pretending that the relationship was fine when it clearly wasn’t.  It was a relief to stop questioning myself and wondering if I was doing something to make the other person treat me poorly – I wasn’t.