Thursday 28 May 2015

In pursuit of perfection

For years I have wasted my life in pursuit of perfection in every area of my life. Although now in my forties I have suddenly woken up to the fact perfection doesn't exist, my dogged pursuit of it haunts me and I can't escape it.

 In my teenage years I berated myself for not having the perfect body. It didn't matter at the time I had a BMI of 22, something I would consider perfect now. The fact that all my friends were smaller and daintier than me, made me feel like a heffer beside them. I wore a size 14 whilst these 5ft nothing teenagers with child like bodies, proudly moaned about how fat they were whilst tugging on their size 6 waist bands. This was in the years where vanity sizing hadn't taken place. Despite the fact my weight was healthy, my body wasn't perfect. I wasn't thin enough, good enough or perfect.

Truth be told I was probably an eating disorder waiting to happen. I wont lie I have made myself sick after eating, I have starved myself and binged as a consequence of being in pursuit of perfection. However my flirtations with purging were short-lived, I couldn't do it properly or I just didn't see the required results.  It makes me so sad, when I think back to the hours I used to spend late at night as a teenager, drawing with a marker pen on my skin all the areas I would have liposuctioned when I was older. There in my bedroom, I would stand in my underwear looking into a full length mirror, highlighting all my perceived imperfections. Its taken me until now to realise perfection can not and will not be achieved in any area of my life because it simply doesn't exist, for anyone.

So why do I still strive so hard to achieve something that only exists in my imagination? It's not just about my body now, something I have given up on. EDS may have given me a wrinkle free face (apparently I can pass as ten years younger. I would be happier with 15 - perfection raises its ugly head again) it has scarred my body with stretch marks that I have had to carry with me from the age of 8. I am not perfect, no one is. Models and TV stars aren't, they are photo-shopped and airbrushed into versions of themselves that even they don't even recognise.

The problem is that now I have had to admit my failure, realised that my body will never be perfect, my pursuit of perfection has found other avenues to explore. Some of this I think is to do with not having the distraction of going out to work. My health simply doesn't permit me to, it's not a lifestyle choice. I have now set myself up to fail as the perfect housewife, I feel that as I don't contribute with going out to work, I must ensure our home is perfect. (I must state here that my husband doesn't expect me to do anything.) Despite the fact I know that perfection doesn't exist. My house must be clean at all times, even if I almost kill myself achieving it. Energy I could spend enjoying myself is spent fretting over is the bathroom clean? do the carpets smell of dog? are the shelves dusty, is the washing machine door clean? My health always throws a spanner in the works, so I can not achieve the tasks I set myself and if I did achieve just a fraction of them I would have to pay the consequences - pain, syncope, pre-syncope or bedridden. I just can't leave it alone. I think it is a form of self-torture. I have to see the bad, the incomplete, the uneven, the fault, the flaw in everything around me. I rob myself of happiness.

I can't accept praise, I never have been able to, it feels false. However I am more than ready to accept criticism even if it is only implied. I can see criticism where none exists. I will replay conversations from years ago, where I have done something wrong, hurt someone unintentionally and appear to revel in the hurt I cause myself. I can go over and over conversations picking them apart to find the hidden meaning. The hidden meaning invariably being a criticism of me. Why is my mind so fixated on perfect, the thing I can't achieve and why do I have to torture myself over it? I accept that other people make mistakes but I don't allow myself to. When my husband talks negatively about himself, usually calling himself stupid, I immediately step in and tell him to stop it. I tell him he isn't stupid and it hurts me when he negatively talks to himself but he has no idea about the battle raging in my head telling me I am stupid, imperfect.

Sometimes I am unable to write my blog because the gods of perfection have stepped in. Before I have even touched the keyboard they are screaming that I can't write, it's crap. I am paralysed by self criticism, nothing I can write will ever be good enough, perfect. I may get comments, Facebook messages, tweets from people who have enjoyed what I have written, it doesn't matter because in my imperfect mind they don't mean what they say. Lets be honest there will have been times in everyone's life that you have paid a complement and not meant a single word of it or said something you knew the other person wanted to hear. My crazy, f**ked up mind lets me bask in those compliments for about a millisecond, then lets me come crashing down to earth by saying "they didn't mean it, the post is shit". 

I can only compare it to having an evil twin sat on your shoulder who revels in your misery and continually robs you of any happiness. The evil twin negates the good feelings you have about things you have achieved. There have been times in my life when I have been too busy, too happy to hear the voice of the evil twin. At the moment he shouts at me as if I was hard of hearing. It is not only the negative self talk I hear but it colours the way I look at the world.

Why when I am so sick and have only just spent the last three days able to get out of bed do I care? Why am I a slave to this impossible pursuit of perfection? Why do I set myself up to fail. I wouldn't set myself the goal of running a marathon, I know that I am not physically able. So in my current state of health why do I set myself these comparable targets?

If the rational, logical part of my mind can see that perfection simply doesn't exist why doesn't the rest of me? This pursuit of perfection only leads to unhappiness and a sense of failure yet it's getting worse. I sometimes wonder if it is linked to my (currently) declining health? My need to control things that are out of my control? I am certainly suffering a great deal physically at the moment and mentally as well. I suppose with a chronic health condition, even though we live with them daily when an extra spanner is thrown in the works it can change your perception of everything.

 I still get enjoyment out of everyday life and pursue happiness at every possibility. I just can't seem to control the invasive thoughts that I am not good enough. Although I challenge them constantly it wears me down. I am exhausted by it all as the demands of being in pursuit of perfection in every area of my life, seems to haunt me constantly.

Writing about this relentless pursuit has helped me challenge it over the last few days and freed me up from the constant need for perfection. I know when things feel like they are spiralling out of control health wise my inner demons come out to play.

Thursday 21 May 2015

A Mum update

As my regular readers will know my mum had a major spinal operation on 28th April 2015. Since then I have been providing you all with regular updates. Mum has kindly given me permission to share these pictures with you so that you can see how well she is healing.

Mum and I have been overwhelmed by everyone's messages wishing her well. It is so very kind of you to do this when many of you are complete strangers. It is such a shame that some of the people who mum thought were her friends couldn't do the same. I guess it is true you certainly do find out who your friends are in your hour of need. Those messages of yours have been very uplifting so thank you for taking the time to do that.

The picture below was taken on or around 4th May (approx 6 days after her operation). As you can see she is very bruised. It was mainly the bruising that was causing her pain. Getting on and off the bed was the main source of pain at this point. Initially when she came home from hospital she was taking nothing more than Naproxen (NSAID) however this was not enough and she had to resume taking morphine for a few days. She had a couple of very rough nights, it seemed that night-time was when the post operative pain was at its worst.

The second picture was taken on or around the 8th May (approx 10 days after her operation) and what a difference there is between the first and second pictures. She just has some very slight bruising left when this was taken and her scar is healing beautifully. We are hoping that it stays this way as both my sister and I have a tendency for wide scars which consist of paper-thin tissue.

Mum has completely astounded me with how well she is doing after this major surgery. The surgeon had to break her spine to correct the dislocation and stenosis. Immediately after the operation as mum came around from the general anaesthetic she noticed that the pain she had in her foot for years had gone. This was due to the entrapped nerves being released. 

She is increasing her activity level every day. For the time being she is not allowed to do anything that involves bending or twisting. She has told me that the grabber she bought to help her pick up dropped items has been a life saver! She walks twice a day, two laps around the small street where she lives. Before the operation she couldn't have done half a lap of the street. She is back to doing the cooking, thankfully she has an eye level oven, so no bending required.
Mum stopped taking the oramorph within a few days of coming out of hospital and is gradually reducing her other pain medications as well. She can't believe how well she is doing and keeps waiting for the bubble to burst as she has read on so many websites about people suddenly getting all the pain back. The weirdest thing she has had happen was during her first few days home, her legs would jerk, not just a little bit but the would fly up in the air. We believe it is due to the nerves that were trapped finally getting messages through and the nerves that were damaged not knowing what to do with those messages. Thankfully that has stopped.

The last picture is of my parents dog Maggie Mae she is a Jack Russell Terrier and has always been my dads dog until now. Before the operation when my dad went off to work in the mornings Maggie would sulk upstairs all day until my dad got home in the evening. Mum said you wouldn't even know we had a dog. It is quite funny as my own dog Mollie does the same thing, she sleeps on my husband's bed all day when he is at work. Since my mums operation Maggie has taken to guarding my mum, so much so that she will growl at my dad when he goes to kiss her. She has stuck to my mum like glue since she came home. I asked my mum to take a picture so that you could see her. Mum is stretched out on the sofa and Maggie has got as close as she can get to her. It is funny how animals decide that we need their protection. As I write this Frankie is so close to me his bum is resting on the edge of the keyboard!

I have had a rough seven days, I came down with a chest infection which completely wiped me out and then I have come down with a stomach upset. A cough and diarrhoea is a dangerous combination. So I have been feeling pretty sorry for myself. So its nice to be able to tell you how well my mum has been doing since she had her operation at the end of April. 

Thursday 14 May 2015

My impending hospital stay

It is crazy the amount of stuff you have to organise for a routine hospital admission. I am starting to think there would be a lot less work involved if it was an emergency but know my husband couldn't take the stress involved.

I like lists I can't help it. There is nothing like the satisfaction of crossing off the jobs as they are completed. It's a remnant from a previous life, you know the one where I contributed to society, felt like I was actually doing something instead of treading water whilst waiting for new symptoms to arrive. It seems a long time ago now but my organising skills do come in handy. Hubby has a list also, written by me to keep him occupied and out of trouble whilst I am away.

I have printed off my prescription list, ( a double side of A4 paper), printed out my symptoms a list for both EDS and PoTs, as last time I was admitted the Doctor processing me simply had no clue. I have bought new pyjamas, a dressing gown and socks as my feet are always cold. Now I am trying to work out a way of shoehorning it all in to my overnight bag. If it was just simply overnight I could manage but this is in all likely hood be a stay from Tuesday to Friday. By the time you read this on Thursday morning I could a) be one day away from escaping or b) the staff have pissed me off so much I have discharged myself. It will be fun either way.

At least this time I know how to play the game. I am back on the locked dementia ward and in a side room. No side room and I am going home pure and simple. That may sound ungrateful but just a few hours exposed to the noise of the ward will send me into a downward spiral of complete bed rest for a few weeks. I can't deal with loud continuous noise any more. When in hospital my condition should be stable and not allowed to deteriorate.

This time I know I am well within my rights to refuse tests / treatment and will not be intimidated by an aggressive night nurse who demands to check me for bedsores. Do you remember the one who removed the bed-clothes and tried to undress me before explaining what she was doing? I am looking forward to seeing her again because this time I will take her name and make a formal complaint if she tries anything remotely similar.

People keep telling me to enjoy the rest whilst I am in hospital but there will be no rest. The constant ambient noise, lighting and series of tests that I will be put through will give me no rest. I will get home exhausted and that will be followed by a collapse a few days later. By collapse I mean unable to get out of bed for days on end. Since I have got sick I can not deal with the outside world. There is too much stimuli for my senses, I become overloaded. I can cope at home because the stimuli do not change and I can take myself off to bed any time I like. 

In hospital my mobility issues will hit me hard. I can walk short distances albeit unsteadily at times, however in hospital I will have to walk further than I normally would to the bathroom. When you drink 6-7 litres a day that's 20+ bathroom trips. Even if the difference between getting to the bathroom at home and getting to the bathroom in hospital is only a metre, by the end of the day it would be difference of an additional 40 metres walked. This will trigger bursitis in my hips and pain in my knees and back. When you aren't sick you don't think about things like these. Even if I manage to wheel myself in my chair, it's still extra pressure on my shoulders which will mean at some point one or both will sublux or dislocate. There is no such thing as rest for me in hospital, I know they meant well but it just wont happen.

I will also be dealing with constant anxiety firstly about being in hospital surrounded by people I wouldn't trust as far as I could throw them due to previous experiences but I will also be worrying about hubby and the dogs. I know how hard my absence hits hubby and the mutts. At least this time we are better prepared and have made sure he has friends coming around to see him. Otherwise he is liable to retreat into his man cave, sitting in his underwear eating junk food to comfort himself. As he suffers with anxiety and depression he does need the support of his friends and I am so grateful he has such a good bunch of people to look out for him. I will be ok I will just miss them all.

Part of my fear of hospital stays is like anyone else's a fear of the unknown. I have no idea what the doctors have planned for me and I find the lack of control disturbing. I have so very little control over my life, I depend on others for everything, when what little autonomy I do have is removed I react badly. I really don't want tests that I have previously vetoed being sprung on me such as tilt table tests. I have a sneaking suspicion that they want to do one but the answer will still be a flat no as the last one in February 2014 made my health decline so rapidly I was stuck in bed for a month afterwards. As I was left to deal with this alone (as in no medical care) I am loath to ever put myself in that position again.

I know I need to go to hospital, I know I am lucky that I live in a country where (for the time being) its free at the point of use. I am lucky that I have doctors who are willing to try to get answers when I have been fobbed off and forgotten by so many others previously. I just don't feel that lucky today the day before I go in! 

So hopefully after my stay, if there is a bed available and I am well enough I should be able to regale you with my stories of what tests I had and how I was treated by the medical staff. Fingers crossed it is better than last time!

After all the stress on Tuesday morning when I rang at 8am I was told they were struggling to find me a bed. By 2pm my hospital stay was cancelled. Now I have to go back on the waiting list for another available slot.

Thursday 7 May 2015

Vintage? Moi?

I had a terrible epiphany last week, a truly awful one, I am getting old and I really don't like it. From now on I will be describing myself as vintage rather than the O word. It sounds kinder, more shabby chic and less like the fact I am hurtling towards pensionable age.

What brought about this epiphany? I was chatting with a friend and her daughter who is 17. I was a bit of an arrogant twat at the age of 17, I think I am permitted to admit that at the grand old, excuse me the vintage period of 41. It wasn't her that made me feel old, it was having to explain when telling tales from my youth that we didn't have mobile phones (I joked we used paper cups and a length of string), the shops didn't open on Sundays and the world well it was a different place. She has never known the joy of taping the charts on a Sunday night, or reeling back in the tape from a cassette tape with a pencil, the video recorder or having a dial on a telephone. I enjoyed chatting with her it was only a few days later when I recalled the conversation when she said I was her second mum (she calls hubby her work dad) that I thought "shit, I am old".

Years ago I could have legitimately replied to her "I'm not old enough to be your mum". I would have used that line well into my 30's only now I am 41 I have to admit I can't. I think I find it particularly hard because not having had children myself, I never see myself as anyone's mum. I therefore never consider myself old enough to be a mother. Although acquaintances of mine have already welcomed Grand Children into the world, which makes me shriek in horror! There is nothing like a friend announcing on social media that they are a grand parent to make you feel past your prime. 

Like everyone I guess I just don't see myself as getting older. Old people to me are people in their eighties not anyone under that age but to a 17-year-old (well a 17-year-old me) I must appear ancient. At the age of 17 I would have seen people in their twenties as being out of touch with the youth of today. I would laugh at old people who would tell me on a tea break at work that they felt 18, when the wrinkles on their face clearly told me they weren't. When you are 17 you feel invincible and those old people have no clue what life is really like. I am now one of those clueless oldies, Vintage if you please.

 A close friend who is ten years older than me has also had this epiphany and it is disturbing him greatly. He told me he had never considered his own mortality before and the length of time he might had left. Unfortunately due to my health it is something I have considered at great length. It doesn't bother me, death is still a long, long way in the future it's becoming vintage (in the eyes of others) that is causing me distress. I am lucky  Ehlers Danlos Syndrome tends to leave its sufferers looking a lot younger than their contemporaries, it is the only bonus of this condition as far as I can tell. I have been told a few times of late I look in my early thirties, although I would have been a great deal happier if they had told me 29.

I took turning 20 badly. I assumed that overnight I would develop grey hairs, black hair sprouting from my chin and wrinkles. I was relieved on my birthday when this didn't happen but I really couldn't stand no longer being a teenager. It is the only birthday (so far) that I have struggled to deal with. I think turning 50 will be hard to accept but at least I have over 8 1/2 years to come to terms with it. Just why do the years have to whizz by so fast? It seems so bloody unfair. Turning 20 made me miserable, I was excited about turning 40, it felt quite grown up. I realise however that no one ever truly feels grown up. No one knows what the hell they are doing and we are all just making it up as we go along. It's a nice feeling to know that pretty much everyone feels the same.

I laugh at what those young people consider fashionable. When I was at school we laughed at old people who painted on their eyebrows in some 1940's style arch, the trend now is to shave them off and draw two fat slugs on your face. It appears that the only shade of foundation to wear is orange with a great tide mark appearing where your face meets your neck. In my day (I sound positively ancient) such a tide mark would be greeted with horror. We were told in every magazine to blend, blend, blend so that our foundation couldn't be seen and we didn't end up with a face that was a different colour to our neck. We didn't wear denim shorts (pornographically short) with thick opaque tights and converse trainers. I admit I wore converse trainers as a teenager obviously I was well ahead of the fashion curve. We also didn't have eyelashes that were so caked in mascara they looked like broken spiders legs hanging off our eyelids. So many things have changed and I am left thing when the f**k did it happen? I feel like sleeping beauty awaking 100 years later in a different world.  

I remember very clearly when I had the first inkling I was getting old I mean becoming vintage. I was at work processing application forms for Saturday jobs and the kids that were applying were stating dates of birth as 1990. For one horrible moment I realised I was old enough for one of these to be my child. I don't think I ever got over it. It upset me for days, 1990 just seemed like a blink of an eye away but clearly it wasn't. As I am writing this I have realised that my husband and I have been together longer than our friends daughter has been alive. Those Saturday kids that were taken on are now getting married or having kids of their own. I am happy for them but it seals my fate I am now vintage. I am one of those "old" people who still feels like they are young, just massively out of touch as far as they are concerned. How and when did it happen?

The clues were there when I started liking the music that my parents played when I was a kid. Stuff I would tell them at the time was a kind of torture to be made to listen to. Asking to borrow your dad's Leonard Cohen CD is a sure sign your becoming vintage. Enjoying BBC Radio 2 is another, I happened to have it on for a few days whilst we looked after a friends budgie, he loves having noise to compete against. BBC Radio 2 when I was growing up was for old people who weren't cool enough to listen to BBC Radio 1 which played the music in the current charts. You have to admit time is marching on when there is a radio station  called Absolute '80's and a sister station called Absolute '90's. Whenever I think of the 1990's I think it was just a decade ago, I want to cry when I realise it wasn't. Next year will mark twenty years since I graduated from University. Scary!

Is it wrong that I am so vain that it saddens me more at this precise moment in time that I am more upset about becoming vintage than I am about being sick? What is wrong with me? 

It seems I can cope with having the body of a 90-year-old but not with the natural progression of time. How nuts is that?