Words of wisdom Wednesday is going to be all about me….and you ;o)

As you know I finally went to the doctors – I then had to do the most excruciating hour long telephone type interview with a nurse.  I say excruciating as for me – talking about my feelings is not something I am used to doing – by nature I am a ‘fixer upper’ I help other people.  I want to fix things for other people.  I am the ’go to’ if you have a problem or have something you need to talk about.  I’ve been told many times that, by nature, I seem to get people to say things or more than they ever intended to do.  Thankfully I have no clue how I do this – so it is something I can never manipulate.

I did have a teacher stop me once to ask me who was there when I needed a shoulder to cry on and I was like well my friends and family and she questioned this as she said that I never seemed to let people know that anything was wrong.

Years later her words came back to……haunt me is too strong a phrase but her words sure came back to me.

When I went through my years of illness I realised I didn’t know how to start to talk about myself.  I mean you can talk about yourself on a superficial level quite easily of course.  Like what I have been up to or what I have been eating blah blah.  But to actually really open up about my feelings – I’ve never really done that.


When I knew I was getting ill I panicked a bit.  I had not long moved back to London – I was still finding my feet in my new town, new job, rebuilding friendships and trying to make new ones; when suddenly things were not right.  My health was deteriorating rapidly – the doctors didn’t have a clue.  I felt more lost than I’ve ever felt in my life.

7 years ago – just before Christmas – one doctor sat me down and said that I had to prepare for the worst that they thought it was going to be cancer and they thought I should start to get used to the news.

This was rubbish.  I did announce to the doctor that they should never do that – if I have it then tell me and I can deal with it – don’t suggest something like that – especially before Christmas.  I kept this to myself for a few days – I made up my mind not to even mention it to my family – I mean it was Christmas!  At my works party I told a friend and she gave me a hug and we had a mini ‘Oh my god’ and we both shed some tears.


Then I sort of buttoned up again.  I can’t even remember now how often I was at the doctors but it felt pretty much like once a week – I felt like I was moving in.  I didn’t know what was going on.  During this time I was made redundant, it was a government funded job so I knew this time was coming as the whole thing was only meant to last 4 years – we managed to get 6 out of them – anyway I managed to find another job before my job ended and moved on.  I was becoming so sick it was untrue.  I was too weak to even walk from my bedroom to the bathroom sometimes.  Twice I collapsed outside my bedroom door – too weak to get up – no one was home.  They were times of absolute panic and there is nothing like that to make you feel so alone.  I have since been told there were at least 8 occasions during this time when I should’ve called an ambulance as an emergency, but to be honest at the time I was so not thinking straight and not sure what was going on and not thinking it was bad enough for some reason.

The last time I collapsed outside my bedroom door – as soon as I could get up again I phoned my Mom and I cried.  That was when she knew something was really wrong as she said I was a tough one and never cried.  This has since changed.  I weep easily.  I think this is to do with how this illness totally fucked up my hormones.  But anyway……nothing wrong with crying ay!

Still the trips to the doctors – still tests – still the shrugs, trying to hold down a job.  Not being supported, getting sicker and sicker.  I couldn’t go out and I couldn’t explain why.  Friends seemed to disappear.  And that was when the words of my teacher came back to me and I thought wow yup she’s right – when I really needed someone where were they? When it was me that needed the shoulder for once instead of being the shoulder – where were they?  Many were nowhere to be found.  I cannot begin to tell you how much that hurt.  It also made me truly treasure the people that did stick around.


Then suddenly I seemed to feel a lot better – things were still not OK not by a long shot but I had a bit of energy back.

Roll on about 6 weeks – and I was a few weeks into a new relationship, when bam – shit got real.  I had a major relapse; right in the middle of Camden with my Mom and new boyfriend.  They huddled me into a pub and we sat down and had a very honest conversation.  I was too weak to be going anywhere – but me being me I still couldn’t be totally honest.  So we stayed in the pub.  My Mom and my new boyfriend broke the ice with each other and for their first encounter got to spend about 7 hours drinking with each other! This makes me smile as my boyfriend is from Newcastle! My mom is not a big drinker but boy did she hold her own that day/night!  Anyway – after that we knew I had to really start kicking off with the health service.  About one month after that I was getting tests that were quite horrid, but very necessary.  Within less than 6 months of this new relationship – I had been tested lots and had been given a diagnosis and was awaiting an operation – in the meantime we were both ushered into a room and spoken to about whether we wanted children.  AWKWARD!

Anyway – I don’t want to dwell too much on the nitty gritty and nastiness of all of that – I don’t think I will ever be able to put into words the pain, the loss, the hurt, the scared emotions, the reckless emotions, the downright panic that I lived with for some years.  I had been trying to get this sorted for about 2 years by the time my first operation came about.  I went for my check-up – the nurse hit the roof that no one had checked me for anaemia.  She had watched me try to walk up the stairs – it was comical – I had to rest after 3 steps.  She said the iron reading was lower than she’d seen on anyone still walking – as I pointed out – I barely was…..and friends wondered why I hadn’t been going out!  It then transpired that I was at major risk of a heart attack due to the pressure being put on my heart.  So that would explain the heart pain and flutters and all the problems I still have!?!

The first operation was unsuccessful – in fact – the surgeon made it worse.  They said I was going to have to wait 6 months as they didn’t want to operate again so soon.  He also said he wouldn’t operate unless I had a course of injections that put me through a fake menopause.  I hit the roof – no way to put it politely – but the NHS being a bit money strapped and me not able to afford to go private it turned out I had no choice.  I was getting sicker and sicker.  It was getting harder to hold a job down.  My boss at the time was being really unsupportive.  I went in for the second operation.  There is no other way to put this other than the doctor botched this; they had to cut through my stomach and do a repair job.  But he said that things were ok!  This operation had been a success, but I had to stay overnight for observation.  They kept waking me up to take my stats all night and one time everything dropped so low they called the emergency team in but I pulled round ok without any help – see forever independent.  Obviously they were worried about the damage done as the one surgeon phoned me at home every day for about a week.

All the while pressure was being put on me by my boss, so I quit my job!

Yeah that’s not scary; penniless and in recovery.  Oh well, take yourself out of your comfort zone and sometimes things happen.

I moved out of the flat share I had as I couldn’t manage the hills around the area (especially with all the stiches) and moved in with my boyfriend.  One of the people I was living with went nuts on me for moving.  Sadly we no longer talk.  And I don’t mean that sarcastically – I do feel sad that she couldn’t understand and I didn’t maybe explain well enough but there you go – another life lesson.


I know people say that those that are meant to stick around do but it doesn’t make it easy for some of the people I no longer see.

Now this is not entirely their fault and I will get to that – the damn phobias!!! The doubt I had about them mixed in made it impossible for me to walk into a pub alone and go and meet them for food.  I just couldn’t do it. It was like cement was round my ankles and the heart palpitations – now that just plain was hurting.

Anyway – I found another job – new job, new start…….or so I thought……..

About a month after this second operation I knew things were not ok.  I went to my doctor and we had the biggest heart to heart.  Two doctors at my surgery were/are amazing.  They have been such an amazing help and really seem to care about what I was going through.  One suggested counselling as she said that all I had been through was emotionally huge and having, by this time, spent about 4 years being ill and having heart trouble and all the rest of it – she knew that psychologically that can be a real….for want of a better phrase…head fuck.

We knew another operation was essential.  I threw a bit of a strop about going back to this surgeon and she put her job on the line and got me sent to another hospital!  Hoorah.

Third time lucky! Although this was not without its complications!  I basically started to die on the operating theatre.  I woke up way too aware of where I was and looked down and I was covered in bruises, I had 3 drips in me, and little sponge things stuck all over me.  Apparently I freaked out when I came round and they injected a load of morphine into me.  Not that I could tell.  I woke up in PAIN.  One vein in my arm was going black quite rapidly.  The nurse came over and I asked what all the wires and puncture marks in me where and she said not to worry it was what they did in an emergency but all was good now and shot me full of more morphine.

So this was a couple of years ago.  I am so much better physically than I was.  I still get a lot of pain – it’s almost constant but in a way that I can deal with it – I still have some tumours you see, anyway – the heart thing is still a problem but shouldn’t be life threatening it is just very painful at times.  It occurs weekly I think.  I try not to keep track as I don’t want to obsess about anything like that.


It’s mentally where the problems are more apparent now.  I’ve never felt good about myself and I’ve always been a bit shy but this is where all the social phobias have come from.  It’s even harder for me to feel good about myself.

It’s so difficult to do the easiest of things.

To walk into a room of people.

To talk on the phone.

To not beat yourself up during a conversation fearful that you are no good.

To not look in the mirror and grimace each time.

To beat yourself up for being useless, for going nowhere, for doing nothing, for being no good, for being friendless, for being boring, for being ugly, for being fat, for being in social situations that set off my phobias which in turn kicks off the heart trouble…..the list goes on and on but I am sure you get the idea.  This thing changed who I was, I am not as carefree….it gives you so many doubts that I think only another person who has been through it could really get it I suppose.

And this is the thing – I am not digging for compliments.  I am not putting it on.  You can’t just snap out of a phobia.  It’s not a question of pulling myself together.  IF you think that you don’t have a clue about phobias.  JUST GETTING OUT OF MY FRONT DOOR EVERY DAY IS A BIGGER STRUGGLE THAN YOU COULD EVER IMAGINE.


I hide it well still – apparently – and again I think sometimes that can be my downfall but I am who I am – some things are just personality; the basic make up that is me.

But the big thing is here is that I finally spoke out – I am telling you all this to try to help you see that you don’t always know what goes on behind closed doors, you never really know what anyone is going through, you shouldn’t judge as someone could be going through a world of shit or be having the worst day ever.  You should never just give up!

The thing that breaks my heart about this the most is that I used to just talk to everyone and anyone.  I was abit more choosey than Paris Hilton about what I went out to but only just.  Hopefully someday soon I can find a happy medium between that and what I am like today.

So – wisdom – use it – don’t be so quick to judge – you don’t know someone’s story – instead maybe try to be sympathetic, be kind, be patient, be understanding – not only will it make you a better human bean and the world sure needs more of them but you could really help this person in ways you didn’t know.

The other moral to this is – I went through too much – nothing like what some people go through but it was too much without me speaking out – I suffered for too long out of fear – I’ve half crippled my life because of this – the opportunities that have passed me by – the life I could’ve been living……….but instead of crying over what can’t be changed I have now taken the steps needed to get better, to start to tackle these things.  I have a long way to go and a hard road to travel but who said life was easy and nothing worth having is that easy to come by.

This week I have to go to a workshop to do with all of the phobias.   I will report back if anyone is interested.  I will be fearful going into that room but I WILL do it.


So to any of you out there suffering – and there are many – please seek help – or at least talk to a friend.

The other words of wisdom I can give you is to cherish the true friends you find in life.  Don’t waste time with hangers on or people that aren’t really there for you – really cherish the true friends – there won’t be many of them in life – not real true friends but make sure you look after the one’s that do come along.  And be that true friend for someone else.

Life is for living and the experiences are for sharing.



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