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Sunday, 17 August 2014

M.E and My Depression

'I feel so depressed today' is a sentence I often notice bounced about when I overhear stranger's conversations. But what does it mean to be depressed? It's feeling sad or feeling 'fed up', right? Urm, in a word, no!. Depression is an emotional state which many people wrongly assume you can 'snap' out of if you just find the will. It is a lonely condition which has an unrelenting effect on a persons ability to function 'normally'. It is very different to the sadness people feel occasionally in reaction to life's ups and downs. It can be a very debilitating illness as it affects people's thoughts, feelings, behaviour and even their physical health. Depression has a way of tainting every thought with negativity and replacing every positive thing in a persons life with an empty worthlessness. It can feel like you are falling into a dark deep hole knowing that you will never be able to climb out once you reach the bottom. Depression is an all consuming vacuous pit that sucks everything into it.

Well here I am talking about it because I want people to understand why their often thoughtless comments hurt me. People often suggest I go down to my G. P without make up on so the doctor is more likely to understand how ill I feel but I refuse to do so. I don't look depressed, I often don't appear depressed but I really don't think I should have to walk around crying or with a sign around my neck just so people 'can see' what's wrong with me. Just today someone said to me 'you are a beautiful young girl, what on earth do you have to be depressed about?'. It's very very frustrating that in 2014 depression is to some extent still a dirty word and that we cannot look past a persons outer appearance and see that under the often polished surface people can be suffering the worst amount of pain imaginable. Although things are very slightly changing mental illness unfortunately still carries the stigma it always has. For example think about how you would feel if a neighbour saw you walking into a psychiatric hospital. Embarrassed ? Worried? Ashamed? Judged?. These are all the total opposite of how you would feel if you were seen entering a regular hospital. You wouldn't be alone because although I hate to admit it I felt all of those things when I had to visit a psychiatric hospital last October. Somehow it felt very humiliating and almost like I was admitting defeat by asking for help. When I stepped through the door I looked around at other people and wondered what kind of 'crazy' they were. It's awful to admit that because it is an illness in the same way diabetes or epilepsy is, a part of your body is not functioning properly, your brain. If I had the other conditions I probably wouldn't feel ashamed so why did I feel so bothered by what people may think of me? One word; society.

My depression is quite complex. Six years ago my life changed in an instant. Something traumatic happened to me that turned a switch on and gave me Post Traumatic Stress Disorder. This gave me depression and high anxiety levels and somewhere along the way I also developed PMDD which is basically very severe Pre Menstrual Tension and is similar to Post Natal Depression in the fact it is related to hormone levels. Basically my body reacts very badly to my own hormones. Of course, for a good year or two I didn't really know what was wrong with me, why I had suddenly developed a constant sense of impending doom but eventually it became evident that the incident had left an invisible scar in my mind and that something was wrong. At first I was unwilling to accept I had depression because I have found in other peoples mind there is a fine line between M.E and depression. It is wrongly believed that M.E is just a different name for depression, a way of disguising it in order to avoid being labelled as depressed. The other misconception Is that M.E is caused by depression and whilst I agree that the affect emotional stress has on your immune system can be a contributory factor in the development of M.E I feel in a lot of cases it is the M.E that causes the depression not the other way around. It is a bit of a chicken and egg situation. I have spent years and years fighting to be taken seriously because even many medical professionals still don't believe in M.E or understand that it is in fact neurological illness. So you can see why I didn't want to be labelled with something that I felt people would attribute all my symptoms to.

I am going to try and describe how my depression feels but I have to state that everyone's experiences of the illness are different. Try to remember that I have depression caused by PMDD and PTSD and that even though I have suffered with anxiety since the school bullying, it is also a symptom of these conditions and therefore has worsened due to them . Depression and anxiety for me are very much entwined with one another so when I describe my feelings I am describing them both. One thing I find it hard to deal with is the numbness I experience because when it appears it comes without warning and it takes away all other feelings. Positive feelings such as love and lust all disappear and are replaced by a lonely, empty hollowness and guilt. I can be in a crowd full of people and feel so desperately alone it's frightening, When someone I care about promises to try and 'cheer' me up I feel bad that no matter what they do they can't pull me out of the despair. I feel like I have to smile and act like it has worked when on occasions it can make me feel worse because I want more than anything for them to be able to lift me out of the hole. I honestly think that on these days I could win the lottery and I wouldn't feel the joy. It's really scary to feel this way. On the dats when the depression is bad I constantly feel like something really bad is going to happen. I have butterflies in my stomach and a creeping sensation in my body and it feels like i am standing under a dark cloud. I feel frightened that I will feel like this forever and I feel concerned that I could do something stupid to get rid of it despite knowing deep down that I probably wouldn't. I have also felt like I am going to totally and utterly lose my mind and that nobody will ever be able to help me find it again.That particular symptom I believe was caused by the fact the ambulance didn't come on time when I nearly bled to death. I feel like I am walking around with my eyes closed, everything is dark and it's like I am trying to walk through quick sand. This is just a brief description of how I feel because I wanted to give you am insight but talking about it in depth is still hard for me.

I would like to say plain and simply that depression is an illness, it is a not a choice. I do not choose to think negatively, I do not choose to feel anxious, I do not choose to feel depressed. Curing it is not a matter of thinking positively or 'finding something else to occupy your mind' and it is about time people realised that. I am sick (literally) of people telling me to find a distraction or saying that I have it because I have nothing else to focus on and have too much free time to over think stuff. I must be a strong person to have gt through all the things that have happened to me so I believe me if I could just think this condition away I would. I was desperate to avoid taking medication because I react very badly to many substances and I get lots of side effects from medicines. There was also an incredibly justified concern that I could get the very reaction happen to me that started off the PTSD in the first place as with all anti depressants it is a potential yet rare side effect. A consultant once told me to 'avoid all anti depressants and anti anxiety medications' because of the danger and it put the fear of God into me. I remember taking a tiny dose of Nortriptaline about five years ago and feeling suicidal so I was also worried that would happen to me again. I kept dodging it. I would get very low and set my mind in the fact that I needed help but when it came to the crunch I just didn't have the guts to take anything. I kept avoiding it, I kept saying 'let's give it another four months and if I am still like this I will have to take something' but then the day would come and of course I would say the same thing.I have fought other stuff and this is a constant battle that I can't win so easily. I am now taking Duloxetine and I have been since Christmas. It is a medication that is also used to treat neuropathic pain disorders and therefore it had been recommended to me many times at the pain clinic but because of the aforementioned risks I had never been brave enough to try it. That was until last September when my physical and mental health took a massive spiral downwards. I split up from my boyfriend and he was continuing to play with my emotions, seemingly oblivious to the effect it was having on me (despite it having to be spelt out to him by my Mum) and I was supposed to be having surgery on my nasal turbinates to help me breathe properly. However, I got a massive viral infection and my surgery was cancelled on the day because I was deemed too poorly. I then developed a very scary ear condition with symptoms so bizarre and so frightening that for a few months nobody believed them. In fact, one consultant convinced me I had finally 'lost the plot' and I spent weeks having one panic attack after the other, at one point screaming with fear in the middle of the night. I used a massive chunk of my savings and saw various specialists and it was a relief to hear that the scary symptoms such as hearing my own eyes move were rare yet known about symptoms. I was sent for lots of various tests on my ears and skull which went on for months and I got to the point where I knew I had to try medication because I was so low and frightened by my symptoms I felt like giving up.

It's now been eight months and I am on the lowest possible dosage of Duloxetine. Although it has taken the edge off the depression it has given me a few side effects and I am still pretty frightened by my ear symptoms. The medication gives me the most horrendous nightmares I have ever experienced. When I close my eyes at night I feel more alive than when I am awake because the dreams are so animated and so vivid. I dream that I am being chased or attacked or that I am trapped in some way. However it has taken the edge off of the depression and I am glad that I finally took the plunge and tried it. I have good days and I have bad days but I know now that medication is right for some people and that taking it does not mean that you are weak or that you have failed to change yourself. It is widely believed that depression is caused by an imbalance of serotonin in the brain yet there is currently no way of measuring the levels of this chemical in the brain of a living human being. SSRI and SNRI anti depressants work on serotonin levels so that could be why they are believed to work on lifting depression in some individuals.I have just been advised to double up my dosage to see if it stops the nightmares but I am reluctant and waiting until I find the strength to do this without panicking. Medication does have it's place but it is important that you try other therapies such as cognitive behaviour therapy, counselling and exercise. I have tried all of the therapies except increasing my exercise because unfortunately my M.E means I cannot do much in the way of exercise. This is frustrating because I was a very active child and I was known for being full of energy and unable to sit still. The lack of exercise also has an effect of my self esteem because due to digestive problems I can barely eat any fruit of vegetables which means my diet isn't the best and I feel concerned about how to keep trim. Looking after my figure and taking care of my appearance is something that is very important to me. Some people with depression stop caring about what they look like but to me looking my best has never meant more to me than it does now

I don't want this whole blog entry to be negative so I am going to tell you the other ways in which I cope with it. Well, I am a pretty creative person and I think in a way my depression has made me even more so. I find art is my escapism. I draw, I paint (with a mask on because I am intolerant to any paint fumes even the ones that you can't smell), I transform second hand bric a brac, I make jewellery, I write. I also have found that the depression has made me embrace my individuality. I love to experiment with clothes, make up, hair and I often dress brightly to paint some vibrancy into my life. I hate to fade into the background and to conform to normality or blandness. Music also helps to heal my soul whether it makes me cry, smile or just feel connected to something I listen to it every day. I used to sing but I struggle these days with my painful vocal cords to do songs any justice so I have to  sing only on rare occasions which makes me sad as I love singing. People say that creative people are more susceptible to mood disorders but of course this is something that hasn't really been proven and it could possibly be that depression just brings out the creativity of people as they try to express themselves. However from poets to composers, actors to presidents, many of the great artists past and present have suffered with various mental health problems. In the past Charles Dickens, Beethoven, Van Gogh, Abraham Lincoln, Robert Schumann, Michelangelo, Mark Twain, Virginia Woolf and Mozart all had battles with mood disorders. In the present day, Stephen Fry, Fern Britton, Will Young, Ruby Wax, Jon Bon Jovi, Jim Carrey, Amanda Seyfried, Frankie Sandford, Britney Spears and the late great Robin Williams have been or are sufferers.This is just a small collection of names, there are hundreds more. Many of these amazingly talented people are gregarious individuals who are known for their humour and smily dispositions yet behind the facade lurks their dark feelings. Like me they have become experts at disguising their problems. It just shows that all the money, all the fame in the world does not buy you happiness and that depression does not occur because you have nothing else to focus your mind on.

I am also very lucky to have such supportive loving parents who keep me going. Don't get me wrong it can be incredibly hard for them and we have our ups and downs but no matter what they have always been there for me. Another thing depression will certainly do is reveal who your true friends are because only the tough will survive! I have luckily found a few amazing friends and although even they admit to sometimes finding it hard to comprehend how I feel they always do their best to try. They support me and are the for me no matter what and in return I do the same for them. I have also lost a few 'friends' who couldn't cope with even hearing medical stuff.Two of these girls took me off their Facebook friend list without telling me and when I questioned why they informed me that they were 'fed up with reading negative things online'. At first I was totally disgusted by their lack of compassion but then I felt sorry for them because although it would be nice to view life through rose tinted spectacles it is unrealistic to only want positive things in your life and to bury your head in the sand and pretend that illness and pain doesn't exist. One of these girls once told me to come out more often because is shouldn't 'waste my youth' as I would 'regret it in the future' so it wasn't a shock when they treated me with such contempt it was just disappointing that they confirmed my suspicions. If anything depression acts as a filter sieving out the good relationships from the bad.

Anyway, I do hope that by writing about my own experience I have helped you to understand how it feels. I hope that by writing this I inspire other people to speak out more instead of feeling silenced by shame or lack of understanding. If more people talk about it we can eventually lift the stigma attached to it and get people to  accept that it is an illness not a personality flaw or a choice. I am currently planning to come up with a photographic idea to highlight invisible illnesses like depression that I would like to try and circulate and spread through social media. If you have any ideas on how I can get this to go viral please add comments.


Much Love

X

Tuesday, 8 July 2014

The Price I Nearly Paid When An Ambulance Was Delayed

One night in June 2012 I nearly died. It's weird saying that. I can say it to your face, I can even tell you the story but I will tell it in an emotionless way because I cannot connect myself to that night, I don't want to allow myself to. When I talk about it it feels like I am explaining a TV soap opera plot, it does not feel like it happened to me. I know that if I let myself feel the emotions I felt that night I will fall to pieces. It's bad enough that I have vivid nightmares about it. I try to bury it but it has affected me in many ways. Let me start by saying that even though I had just experienced three weeks of hell I was at this point the happiest I had been in well over ten years. I had just met my boyfriend (now my ex, please see previous posts!), I thought I was in love and that along with the support of my amazing parents was probably what carried me through the trauma of almost bleeding to death.

On May 31st 2012 I had a tonsillectomy. The procedure went well yet I experienced several problems after such as infections and an episode of minor bleeding (spots or blood). I have experienced a LOT of pain in my life but for a while I had the worst pain I have ever known and I was unable to even swallow my own saliva. I was hospitalised on three occasions and hooked up to a drip and several antibiotics. It was depressing, every time I came home something would happen and I would end up back there again. My then boyfriend kept me going as he came to visit late evenings and like I have previously stated I was experiencing the buzz of the new relationship so the distraction proved to be every helpful. Still, I was physically drained and lost a lot of weight due to the stress and inability to eat. Finally I was discharged and things looked more positive, my Consultant advised that I should be ok to go on the holiday we had booked months ago as it was in this country and no flying was involved. I was apprehensive but didn't want to stop my parents having a holiday as I felt that they deserved a break after the past few weeks. We set off a few days after I was discharged and when we got there I felt quite relaxed because the cottage we stayed in has always felt like a second home to me. We had our dinner from the Fish and Chip shop around the corner and then settled in front of the TV for the evening. I tried to switch off but despite the cosy surroundings it was hard to. I remember going outside into the yard for some fresh air with my dog around 11pm and looking up at the sky. It had been a beautiful clear Summer's day and the navy blue sky hung above me like a huge sheet painted with a thousand stars. The stars twinkled silver in colour and the warm air blew my hair gently. I went inside and following my Consultant's advice whilst also trying to ease the pain, I gargled gently with salt water. When I spat it into the sink I noticed a small fleck of blood hit the stainless steel, the redness exaggerated against the pewter background. I tried not to panic as I told my parents and they tried to reassure me that it would be ok yet every few minutes I would keep spitting into a piece of tissue to check it had gone.

Everything seemed ok at bedtime apart from the panic simmering inside me like a caged animal trying to escape. I went into my room grabbed a book and settled into my cosy single bed with a copy of Cosmopolitan magazine and a lovely hot water bottle. I was just texting my friend when I felt my mouth fill with a warm liquid. I had to quickly spit it out onto my magazine of all places. When I saw what the liquid was my stomach did somersaults and the caged animal finally escaped. It was blood. Fresh, bright dripping blood, and it was a fifty pence sized blob. My legs couldn't carry me fast enough to the door and as my shaking hands threw the door open at top speed my voice yelled out 'Mum! call an ambulance, quick!'. Mum came rushing out of her room and She was shocked by the sight that met her as I showed her the a tissue full of blood. She shouted my Dad who stood there like a statue in pure disbelief. She switched on her mobile and after what seemed like forever the phone was ready to make calls and someone dialled 999. I remember calling my boyfriend who was visiting his parents at home in Cornwall. He answered wearily and I shouted 'I am bleeding, I am going to die', he didn't reply so I just hung up. I wondered if that would be the last call I ever made to him. I was in the bathroom with my head over the avocado porcelain sink. My mouth kept filling up with warm metallic tasting blood and I was desperately trying to keep from swallowing it. Every time I spat it into the sink I was shocked at the vibrancy of the blood. I struggle to remember the whole of the 999 call as I was concentrating on spitting it out. I can recall the phone operator telling Mum to keep me calm and make sure I didn't swallow too much blood as it would make me sick. I have a phobia of being sick so the thought filled me with dread plus I could visualise what the force of vomiting would do to the bleeding. I knew that if I was sick, I would die but not swallowing it was really difficult, I literally couldn't spit it out quick enough because it kept on like a torrent of scarlet water. It was relentless. I heard Mum shout 'just get an ambulance here. NOW!'. My Dad rushed to get dressed. I started to feel like I was choking, something was stuck in the back of my throat and no matter the risk I had to cough it up. I wretched and had to reach in with my fingers and pull out a mass of what I can only describe as body tissue. Sorry to be graphic but you know when you scrap out pumpkins at Halloween, well it looked like a chunk of bloody pumpkin with shredded tendrils hanging off it. I think they were massive clots of blood. Mum told me I mustn't cough like that but I had no choice because if I didn't I couldn't swallow or breathe properly. I remember her face, ghostly and ashen and her eyes, wide with fear . She was trying to keep me calm whilst shouting at the phone operator 'where are you? Where are you?'. Apparently there were delays due to 'a high number of incidents'. The blood kept on coming, the clots kept on forming. Mum kept the cold water tap running, kept washing the blood away so I didn't realise how much there was. My throat was so dry because I was trying not to swallow. I thought the ambulance would never arrive. Time ticked by, every second feeling like a minute. I felt like this was the place where I was going to die, in the middle of the night in a holiday cottage in a village I didn't live in.

We had nobody to run to for help. We had no landline. We didn't know where the nearest hospital was. I hadn't had the chance to say goodbye to anyone. My parents were going to go home without me, to an empty house that I would never see again. The bleeding was getting worse and my neck felt like it was going to break from bending it over so long, the pain was getting stronger in its intensity. I didn't want to die, I didn't want to die right now when I had been the happiest I had been for years but I knew if they didn't get here soon, I would. Time was running out. Mum was shouting at them to get here but it wasn't doing any good. I wondered what would happen if the phone reception disappeared as it often did in this village, or if Mum's battery ran out. My phone had little charge on it too. I could hear my own voice screaming 'help me, I am going to die!' over and over yet it felt like it wasn't me because I had retreated inside myself, becoming numb at the threat to my life. It was like an acceptance of my fate was starting to form. This was it.

Finally around 45 minutes after the bleeding begun a single paramedic arrived. He did nothing to reassure me, he was pretty blunt when Mum asked him what drugs he was putting into my system as he whacked a cannula into my arm 'A drip, ok?!', he snapped. He appeared to not know what to do, calling for back up and sitting there filling in forms and asking questions that he expected me to answer myself when I had blood spurting from my mouth. After what seemed like forever the ambulance finally came, what happened is a blur but they didn't do much to help me. I remember walking down the stairs as fast as I could manage through the weakness and them telling me 'slow down, you will pull out your drip'. Its bizarre but I remember looking at the pile on the slightly worn carpet, thinking I would never see it again. When I got into the courtyard I saw my parents faces illuminated by the street lights and the worry was painted under their eyes like charcoal on a white canvas. Again, I wondered if this would be the last time I would see them together .I thought about my beautiful little dog who was uncharacteristically quiet in the living room. I knew that he would never survive without me. He is my baby and I see myself as his Mummy, I don't care how silly that sounds to non pet owners, he is my world. The paramedic said my dad could follow in his car as he wasn't allowed in the ambulance but he had consumed three pints of bitter and was in no state to drive. They agreed that he could come. Mum would have to stay on her own having no clue what was going to happen to her daughter. She kissed my cheek and hugged me tight. We must have said 'I love you' fifteen times and I asked her to look after my dog and if anything happened to me to make sure he was ok. The doors closed and the journey to the hospital began.

We had no lights on the ambulance, it was a subcontracted ambulance. There was nothing that they could do to help me apart from to keep taking my blood pressure. I was given a bowl and it was rapidly filling up with the scarlet liquid and big clots. I looked like I was holding a bowl of body organs and my blood was foamy, mixed with saliva. I had to sit there staring at it which only confirmed in my mind how dangerous the situation was and made me wretch to be sick. 'Don't do that' said the paramedic. How on earth could I seriously stop myself when the clots were stuck in my throat, yet each time it made the blood flow quicker. He was filling in forms. I kept saying 'I am going to die' and he did nothing to console me, in fact he didn't even reply. Dad tried to keep me positive but as we drove down winding country roads time ticked by. It seemed to take forever. The paramedic said I needed to calm down because my blood pressure was showing I was at danger of cardiac arrest. I couldn't. I was petrified. On and on we went through the dark night, the bumps in the road shaking my bowl of blood until we eventually reached the hospital where the emergency department were awaiting my arrival. They rushed out to me looking anxious and I was wheeled inside. I don't want to go into details about the treatment but eventually they managed to stem the bleeding. It was painful and very distressing but I was thankful that I didn't have to go into surgery again. I had been so worried about that prospect especially as my Mum wasn't with me. I had very limited battery on my phone and had forgotten the charger which panicked me.My dad left at around 4am by taxi as I didn't like the thought of Mum being alone in the cottage. I spent about three nights in Norwich hospital and despite it being a really modern lovely hospital it was a lonely very miserable time being so far from my parents. They visited once a day and brought my doggy but couldn't come more often as it was a journey from the cottage. I was pretty weak and numb but I do remember saying to my Mum and Dad that 'I wish I had died' and my Dad crying at the words.

Mum told me that when we left in the ambulance she felt like she would never see me again. She said she 'acted like a zombie' and went around the cottage packing everything into suitcases. She cleaned the bathroom and broke down when she found one of my hairs in the plug hole. Mum vowed that if I was ok she would never moan at me about my long hairs getting everywhere ever again. She tried to stem panic about the fact that she was stranded in the cottage with nobody she knew around and erase the memories of what had just happened but she was filled with terror. She said the same as me, that she thought they would be returning home without me. She felt hopeless being so far away and not knowing what was going on and she even rang my brother at 4am because she was just desperate for someone to talk to, but of course he was asleep. It was Fathers  Day and as she was packing the cases she found a card I had written for my Dad and broke down at the sight of it. I later learnt that my Dad read it and was in bits as the trauma finally hit him.

Three days later it was I was discharged. When my parents came to collect me to take me home part of me didn't want to leave the hospital. I was scared of it happening again and even though the doctors had said I would be safe I didn't trust them. I had been told it was safe to go on holiday before and look what had happened. The journey home was one of the most horrendous journeys I have ever had because I was in a panic the whole way. Every five minutes I would keep spitting into a tissue to check if there was blood. We got held up in traffic down a country road and I almost hyperventilated at one point because I was worried that if it happened again an ambulance would never reach me and I would die in the car in the middle of nowhere.  It seemed like a lifetime, it seemed like it was a massive risk to drive home.

The incident that June had a massive impact on me. It worsened my depression and my existing Post Traumatic Stress Disorder. My Grandad fell over a month later and broke his hip. He was hospitalised for about six weeks and I couldn't bring myself to visit more than once because I couldn't bear the thought of going into a hospital and being surrounded by drips and medical devices. I attend hospital a lot due to my own health conditions but this was different because the ward was full of seriously ill people. We were very very close and I know that he would have been greatly helped by my visits. I will never forgive myself for that because he gave up fighting and he died two months after I myself nearly did. I feel I let him down. As I have previously mentioned I have flashbacks and vivid nightmares about the incident and get sudden feelings of doom. When I experience these lows I feel like something really bad is going to happen and nobody will come if I need help. I also get periods of what my counsellor described as 'disassociation' or emotional detachment, where I feel like I am not really here. It's hard to describe but I kind of feel like I am inside myself and that I am talking, laughing etc yet that person is not me and I am witnessing it from within. That my best way of explaining it. I can feel like I have no emotions, just numb, detached and look like down at my body and feel like it doesn't belong to me. Those kind of feelings are very scary, very confusing and interfere with my life and relationships. I also suffer with neck pain and stiffness due to the fact that my head was bent over a sink for two hours.

I contacted a solicitor because I wrote to the ambulance service to question why it took so long for them to reach me and they apologised but said that night was very busy for them. They said our 999 call was coded 'Red 2. Life threatening and requiring an eight minute response time'. Their reply claimed that the paramedic arrived at 00.35 which was 37 minutes after the original call and four and a half times over the required response time and that an ambulance arrived just after 00.45. I do question if this is accurate because both my parents and I think it was even longer, However, I definitely didn't get to the hospital until around 1.45 to 2am which meant I lost more blood than I should have and went through far more anxiety and panic than I should have done. They said 'regretfully, due to pressures outside our control and the location of the closet resource, an 8 minute response time was not achievable' and that they 'would also like to apologise on behalf of the Trust for failing to meet your expectations on this occasion'. I feel it is totally and utterly laughable that they think these words compensate me for the trauma we all went through. They said that because I didn't die they are not accountable for my distress. I didn't die but in a way a part of me did that night and they should be held accountable for the continuing effects on my mental and physical health that were caused by the significant delay. People that have been let down by this ambulance service not so long ago as me HAVE died and there is no excuse whatever for it. We need to fight for justice, to fight for a revision of the service and fight for change. Accurate ambulance response times are imperative and mistakes should not be brushed under the carpet. I for one do not accept an unemotional apology for what happened to me. It has taken me two years to feel like I can write this and I may pay for their mistakes for the rest of my life.

Wednesday, 18 June 2014

The Real M.E Part 3, Sticks and Stones.....

I am about to share something with you that I find very difficult to talk about. I am going to tell you from the heart what it felt like to live my life in constant fear of verbal abuse. I have considered if those who bullied me will ever read this as with the excess of social networking it is a high probability. However, some of the bullies most likely wouldn't even realise this is about them because quite frankly they probably didn't even consider themselves to be bullies and for them the past is long forgotten. I have found that not only do people change as their lives evolve but people also create their own memories of events and therefore have different versions of them. If I am honest I really don't think their opinion is of any interest to me, I just hope that because they have grown up and had children of their own they have developed more awareness of how their actions affect others.

I will take you back to when I was thirteen. When I left High School I went to a school slightly out of my catchment area. It took me a long time to get accepted into this school and I was so happy when they finally said yes because they were the only community college in my area to do drama as a GCSE. I had always had dreams of being an actress or a singer and seeing my name in lights and my photo on the front of all the glossy magazines. I remember walking into school on my first day and feeling so overwhelmed by the size of the place and immensely confused by the maze of corridors contained within it. I didn't know many people and the ones I did know, the ones who had been in my year at the last school I didn't really get on with great so it was quite intimidating being surrounded by hundreds of strangers. On my induction day just before the Summer holidays I had been asked out by a boy in my class and I had felt the pressure to say yes even though I wasn't sure I wanted to. Over the Summer we met up a couple of times but I was pretty uncomfortable around him as boys were still scary to me and I had a pretty limited experience of dating. Sure, I had been on a couple of cinema dates and had a few awkward snogs at the Youth Club Disco but when it came to anything more or people saying they had feelings for me I would run a mile (as I personally think it should be at that age..God I sound like a pensioner). Anyway, there was a real divide at this school between the regular kids and those who conversed with a more well spoken tone. These girls tended to be the ones with all the power and friends in our year and because I had started to 'date' one of their 'gang' they didn't like me from day one. This escalated when I dumped the guy as even though he was pretty good looking I just didn't want a boyfriend at such a young age. He didn't like it either and the dent on his ego caused a bit of a bitter streak in his attitude towards me. I had done some child modelling for Next and George at Asda and he decided to tell everyone I had modelled gloves because I was 'too ugly' for anything else. It was obviously a cruel joke but the girls in his circle of friends latched onto it. I say girls but there was one main ring leader, (Girl Z) and the other two just sat back and laughed without speaking. These girls were in two of my classes. In one subject Girl Z barely got through a lesson without shouting something mean at me. It was usually something like 'did you really do modelling?. What for, balaclavas?' Or 'Ugly Slag'. It was shouted at a volume the rest of the class could hear and on many occasions even the teacher heard. He would sometimes say 'that's enough' but she would never get into trouble for it and there was no effort made to stop it. The friends she sat with, including about three or four lads would usually laugh really loud and a few times one of them would shout something as well. I remember feeling really really self conscious and wishing that the floor would open up and swallow me whole. At my previous school I had been bullied about my looks (I would rather not go into great detail hence why I didn't mention it previously) and now it was happening again I felt very paranoid and almost ashamed of my appearance. I began to feel frightened of the words and I felt a cloud of butterflies flitting around in my stomach at the very thought of them. I answered back a few times but my mouth just didn't know what to speak, especially to her favourite question 'Why are you so ugly?'. What possible response could I give when the whole classes' eyes were upon me?. I started dropping out of the lesson, it got to the point where I only attended it once every two weeks. Nobody ever questioned it, my teacher never complained or seemed to care about it. I don't know how I managed to pass my exam in this subject but luckily I did as well as all my other subjects. I had gone from a student predicted mainly A's in my exams to someone who skipped lessons and was expecting to fail every exam.

Meanwhile I had been suffering in another subject, my beloved Drama. It started about three months into the year with three girls calling me a 'slag' or a 'bitch'. I reported them to my teacher and two of the girls appeared to stop their horrible words yet for a while they continued to show their distaste for me with threatening looks. However, the other girl (Girl W) refused to be pacified. She was relentless in her pursuit of me and nothing was going to stop her. We had a game in Drama where you had to close your eyes and put your thumbs in the air and three people had to go around the group and lightly pull someone's thumb, then the 'victims' had to guess who it was (yeah I know what you are thinking, the lamest game ever). Well Girl W chose me and instead of lightly pulling my thumb she yanked it so hard it felt like she had broken it. Luckily that was the only time I experienced physical bullying at that school but it shook me up. I felt physically sick before a Drama lesson, it felt like someone had put my insides through a mincer. The second I entered the room I could immediately sense her eyes on me. We had to sit in a huge circle for a lot of lessons and she would sit there staring at me for the whole hour. It was constant, she rarely moved her attention away from me and her gaze burned like a fire. I could feel it spreading up my neck and through my entire face until my cheeks were throbbing with a red hot angry blush. I tried to pretend I wasn't bothered, I desperately avoided meeting her eyes with my own but I think my faked ignorance infuriated her and trying to get some reaction from me became a bit of a game to her. Because she could be disruptive she was often sat right next to the teacher in our circle of twenty five students yet when her vicious tongue spat out the word 'bitch' or 'slag' at me he would totally ignore it. My so called friend never stuck up for me but part of me didn't blame her for keeping quiet because she probably didn't want abuse to come her way. There was never a lesson that went by without her verbally attacking me and in the end it broke me and I decided to drop out of Drama. It was a heartbreaking decision but I had put up with this for a year and I could no longer do so. She still pursued me on the bus journey home or if she saw me around school but it took the edge off knowing that I wouldn't have to sit through an hour of it daily. It then became a more like a game of cat and mouse, I lived with the fear of knowing that she could strike at any time and battled to avoid bumping into her every day.

At this point it felt like the whole school was against me. I was ostracised, often being ignored and left out of conversations and group discussions. People would talk about me as if I wasn't there when they were sitting right next to me. I was treated like I had some infectious disease nobody wanted to catch. Negative opinion of me seemed to spread through the school like a Mexican wave. Other groups of girls would make comments and threaten me and it felt like everywhere I turned someone would be waiting to say something nasty. I tried to appear unfazed to everyone because I thought if I looked like I wasn't bothered people would get bored. I worried about the way I looked at people in case it gave them reason to attack me. I thought there was something wrong with me. I became very self conscious, very aware of my outer appearance and very skilled at adjusting my own body language and reading other peoples. This is something that has followed me into adulthood and has affected my relationships with partners (in both good and bad ways). I have however learnt that my first gut instinct on certain things particularly negative behaviour of partners whether it be through words or actions is usually right and that that I should trust it.

One positive to come out of the situation was that I made some different friends, friends that appeared quiet on the outside but that were lovely, kind and fun. Luckily these friends hung out in places around the school I knew Girl W wouldn't go. These friends were what got me through the hard times yet I rarely discussed my situation in detail with them. We spent a lot of times hiding in the library, somewhere Girl W had probably never heard of but our loud voices were frowned upon and eventually the librarians twigged that we weren't there to do any actual work and we were advised to leave and only return when we had actual work to do. We also found a great way to escape the bullies at lunch was to go into the approved rainy days classrooms which were monitored by teachers or teaching assistants. I learnt to avoid many places such as the school canteen, the 'smoking corner' and the village where we were allowed to go at lunch time. I worked out a safer way to get to lessons and this involved being at least five minutes late to every lesson so the corridors were quiet and free of crowds that may contain a bully. Still, despite this I scuttled down them like a mouse being pursued by a angry cat and with my heart racing and my stomach fluttering. One task I couldn't avoid during school hours was using the toilet but I found a way to make this 'safer' too. My friend and I discovered a disabled toilet near the staff room and if I needed to go I would always use this toilet, even if it meant rushing from right the other end of the school. Mum worried about me because even if it was dark I would wait until everyone else in the school had left before I got my bus home but she didn't know that I would deliberately miss the first bus to school so there was no risk of bumping into her on the journey. I would stand out in the rain and return home soaked through. I became desperate in my want to become invisible. I changed my appearance and started wearing track suits and trainers (believe it or not these were quite popular back then following Sporty Spice's fame). I even had my hair cut much shorter and dyed dark brown but none of this stopped the harassment, in fact one day she snapped 'nice new trainers, I wanted them but you got them you bitch'. I reported the bullying over and over again, Mum sent letters to the school almost weekly yet nothing changed. They tried really thoughtless things such as sitting Girl W and I in a room with a teacher to 'discuss our problems' but she just laughed while I sat there with my insides churning like a washing machine. The most idiotic idea they ever had was to send us on an anti bullying workshop together in the town centre. I had to spend the entire day with her and she just found the whole thing incredibly amusing. She had a face that liked smiling but it was a smile forged with sinister intent, one used to create fear. A smile that for two years ruined my life. My attendance at school for those years was so poor as due to the stress I picked up every virus going, my Mum even got a warning letter about it. I did make it through my GCSE's though and was amazed to pass them all...except for the D I got in maths...yuk!

When I decided to stay on for my A Levels I desperately wanted to study Performing Arts and this meant I had to ask the teacher of the subject if they would accept me onto the course. As you probably can guess it was the same teacher. His reply was yes you can do the subject but 'you need to get over your problems interacting with people'. I was lost for words and lucky that he left the school two months later, taking early retirement. People say 'sticks and stones may break my bones but names will never hurt me' yet verbal abuse can leave permanent emotional scars including deep-seated feelings of low self worth and insignificance. It can affect people in some way or another for the rest of their lives giving them difficulty trusting or a constant fear of certain social situations. Ostracism is very much a silent but in some cases deadly type of bullying. It is an invisible, persistent form of abuse often used to diminish the value and presence of a person which is why it has a prevalence over other types of bullying in the adult workplace environment. Because it is bullies have the security of knowing that their victim has little proof to document in order to highlight the treatment they are receiving. Giving someone the silent treatment is just that, silent. This type of bullying is so powerful in the way it eats away at a persons self worth that it can cause both immediate and long term psychological scars. I have no statistics to quote and I am certainly not a qualified psychologist but I do wonder how many unexplained suicides in adults as well as children that have been provoked by this and the cause has never been discovered. A conservative estimate by BeatBullying.org suggest that at least 20 young people a year commit suicide due to bullying and a 2006 survey revealed that 31 million school days are lost each year because of it. I am not sure if this is just the UK but it is shocking nevertheless.

In my own personal opinion I believe that verbal abuse combined with ostracism is the most destructive of all bullying types. It certainly has affected me throughout my adult life. As I have previously mentioned the stress definitely added to if not caused my health conditions. I have suffered with periods of low self esteem and self doubt and a feeling that I unloveable. Whereas in the past I was a chatterbox because I loved to talk my loquaciousness is now often used as a defence mechanism to cover my true feelings when I am nervous or to fill in silences which overwhelm me. This isn't always a bad thing but it can lead people to make assumptions that I am well when I am feeling pretty poorly. As the tiredness rises so does the pain and therefore the more stressed I get which leads me to talk lots more. Even friends have been known to say 'you seem happy and well today' when it's the exact opposite but it's not their fault for not being mind readers. I am affected in many ways but one major positive is that it has made me embrace my unique style and treasure my quirky personality. It has made me absolutely determined not to conform to 'normality' and to be proud of that fact. I love clothes, I love bright colours and jewellery and I love expressing myself through my creativity. Nobody can take my artistic side away from me and I refuse to blend into the background.  Another positive is that I have made a few amazing friends that love me for who I am and that I trust and will treasure for life. I have also been in several tumultuous relationships all of which have taught me a lot about myself, made me less tolerant of negative behaviour and hyper aware of emotional manipulation. My confidence in who I am is growing but my social confidence has been up and down and is known to change like the tide. I have grown up massively the past five years and I have fought back against my fears and continue to do so. I have to don't I, otherwise the bullies have truly won.

Tuesday, 3 June 2014

The Real M.E Part 2: Bullying, The Primary Years

Writing about the bullying I experienced at school will no doubt uncover hidden memories and be painful but I would really like to share my experiences with you. A few years ago I discovered that at school one of my childhood friends was bullying people behind my back, and even using my name to threaten people, saying that we would attack them if they didn't do as we said...I was horrified ! I am so anti bullying it's unreal and hate the fact I may have been perceived as a bully due to someone else's actions. I have recently read that bullying can leave an indelible imprint on a teenagers brain if it is experienced during a time when it is still growing and developing. The neurological scars it leaves are similar to those created in the brains of children who are sexually or physically abused in early childhood. There is also a prevalence of depression and anxiety based disorders in adults who were bullied during their childhood. I can relate to that information as I know many people can. The bullying I experienced started when I was 7 and lasted until I was 15 and I shall start with the problems I had at primary school.

As I child I lived in the same village I do now. I've been here my whole life.,It's a pretty average village with a row of shops, a few parks and two primary schools. The school I attended was pretty average too but with a good reputation and OFSTED results. I, however wasn't what you would call average. I was a girl who liked to dress up and make my presence known from a young age. Mum had been a model in her youth so she liked to make an effort with her appearance and I guess I followed suit. She said I would only wear what I wanted to wear. I was skinny and generally petite, I had waist length golden blonde hair which I usually wore wavy and I always insisted it was immaculately styled. I guess I always went to school looking neat and tidy. I loved fashion and clothes and I hated looking like everyone else. I was determined to be unique. I was amazed last year when I sat next to an old primary school teacher and she let slip that my nickname amongst the teachers had been 'beauty queen'. I laughed at this and felt really embarrassed but it really set me off thinking about my past and wondering why I had been picked on so much.

At school I was quite loud, quite giggly and a real chatterbox but I was a friendly child who didn't have a cruel side to me. Sure I could be a little bit mischievous but most kids are and it was always harmless fun, I never hurt anyone. However, at school I soon started to get a reputation for being a bit of a 'problem child' and this I believe was for a combination of reasons. Firstly my brother who is five years older than me and has always been a bit of a live wire had previously attended the same school as me. He too had been a nice boy with 'a bit of a gob on him' and I think the teachers were sort of expecting me to follow in his noisy footsteps. When it was confirmed that I too had a love of talking I started to get told off by my teachers on a daily basis. This provoked my classmates parents into asking for their children to be moved away from sitting with me as they felt I was a distraction. Looking back its laughable really as I was always in the highest scoring group for most subjects aside from maths and I wonder if I talked because I wasn't stimulated enough by the work. Whatever the reason I certainly remember helping other children with their work not hindering. Still, I was very aware of the fact that most of my classmate's parents had a really bad opinion of me.  One particular family behaved very oddly. I would call up my close friend's house (let's call her girl A) and ask to speak to her, adding 'please' politely at the end of my sentence yet their Dad would sternly inform me that 'when you ring to speak to someone you should state your name so the caller knows who is calling'. From then on I did as I was told, I never questioned him, I certainly wasn't defiant. Girl A was highly highly intelligent and excelled at everything she did., they obviously thought I wasn't good enough to be her friend. Every time I went over to their house I got the feeling I was greatly disliked and that they, as well as most of the other parents saw me as a bad influence. The irony of the situation is in the present day I am someone who has only been drunk twice in my life, I have never touched drugs and I made the choice to stay a virgin until I was 25 (and to be honest even then I wouldn't say it counted !).

The bullying has seriously affected my life and to this day it still does to some extent. I can't remember precisely how old I was when it started but I do clearly remember someone calling my Mum a 'tart'. I didn't really know the true meaning of the word as I was only about seven but at that age my Mum was my idol and I knew by their tone that it was offensive. Of course my Mum wasn't a tart, she was just unique. It was the eighties and my Mum dressed pretty cool and had massive permed hair.  As I previously mentioned she used to do some modelling, so she was pretty confident in her denim shorts and boob tubes. She always had made up eyes and her lips painted with lipstick, no matter whether it was the 8.30 am or 3.20 pm school run. Nowadays nobody would bat an eyelid at someone who wanted to dress hugely fashionable but obviously back then I can only assume it was talked about because it was different and she stood out. For some reason or another it became an issue for two girls in particular who constantly made negative comments about her. Throughout my school life I was often teased for my clothing but let me be clear it wasn't the fact that my Mum 'dressed' me, as I have previously said I made my own choices from an early age and my Mum always allowed me that freedom (obviously with sensible restrictions). I would also like to state that I wasn't outrageously clothed or anything like that but sometimes I would choose bright colours and I remember a few floaty, hippy style skirts and beaded necklaces. Anyway, it didn't take long before i too started to get called a 'tart' and people started laying the blame on me for things I didn't do. I remember getting in serious trouble for writing 'PISS OFF' in a library ticket. Of course it wasn't actually me, but it was in the same pen and it was written under my name and It was assumed I was the culprit because everyone thought the worst of me.

Apart from Girl A I struggled to really bond with girls and some days nobody wanted to hang with me at lunchtime. I have vivid memories of sitting on my own on the cold concrete floor around the side of the school where nobody was supposed to be. I remember the copious amount of daddy long legs there and the rapid clicking of their wings as they flew around me. Lunchtime dragged and became a very lonely time but in class was worse. I was often the subject of social exclusion and 'the silent treatment', where girls would totally ignore me for a whole day and speak around me as if I wasn't there. I was ostracised, they refused to even acknowledge my presence and it felt very degrading. Other times they would stop talking whenever I entered the room or continue to talk in whispers whilst shooting furtive looks in my direction and laughing as though I was the butt of their jokes. One of the girls (Girl B) hated me for no apparent reason and told her Mum I had called her a 'fat slag' (this was a word I had never even heard of before and it had certainly never left my lips) and the girl's parents stormed into school to confront my parents. That was a meeting I definitely won't forget, I remember running away crying as they shouted at my Mum and Dad and said my Dad thought he was superior to them because he wore a suit to work!.

I found solace outside school by becoming friends with a couple of boys because they shared my interest in nature and science and we would collect ladybirds and butterflies and get all muddy which I loved. When it came to the parents though it still felt like I was viewed as not good enough to spend time with their children. I made a new friend in years 5 and 6 (girl C) but in my therapist's words, 'it was a manipulative friendship'. She liked to play with my emotions and I let her. One day she was my friend, the next she would fall out with me. She loved to bring another friend right up to my face and say loudly 'We are no longer your friends'. The following day she would be my friend again and fall out with the other girl and it continued on like this for a long long time. Very odd, but at the time I obviously never questioned it as I was a child and I didn't know better.

Anyway when I moved up to High School I wasn't in her class but I was in a class with Girl A. I was quite wary of going to the new school as three girls who were two years older than me had randomly called me a 'bitch' outside the shops a week before the term was due to start. I was right to be cautious as within weeks those girls along with at least ten others in their 'gang' started to verbally abuse me with words such as 'slag' and 'bitch'. One of them pushed me down a few steps in a corridor and another pushed me pretty hard into a door in the toilets. I think this is when I started to feel self conscious and scared of being alone. I told my parents and my teachers, there was no way I wasn't going to say something and it helped a little but it didn't stop it. These girls had loads of friends and they were pretty intimidating when they were all together but luckily I managed to avoid bumping into them as a whole more than once. I learnt to stick by my friends sides whenever possible but going to the toilet on my own during class was really really scary. I would hold on as long as I could but when I could no longer hold I would have to take a deep breath before opening the door to the ladies. It was a horrible feeling like a cloud of fluttering butterflies in my stomach desperately trying to get out. I was just so glad that I only had to cope with this for a year, until they moved up to the next school. When they left it was such a relief and even though I would occasionally get called names or teased about my clothing by random girls I would say I really enjoyed the last two years at that school. I did however continue to get called 'tart' or slag by various random people such as my friends younger brother and a guy in my class who took a dislike to me. It was the next school that proved to be my downfall .....

Thursday, 29 May 2014

The Real M.E: Part 1

When you look at my picture, you hear my name or you see me walk past you on the street I am wearing my mask. It's usually a colourful mask; kohl rimmed eyes, wavy scarlet hair, bright jewellery and berry tinted lips often curved into a smile. I wear it well really, it's a perfect disguise, a cloak of protection or a camouflage I can adapt quite readily. I love clothes and creating my own style, I always have but unfortunately this can lead people to misjudge me.  At school I was bullied from the age of seven through to sixteen, I remember every detail and I have no doubt in my mind that it shaped me into the person I am today, both the good bits and the bad bits (everyone has negative aspects of their personalities). I am going to share some of this with you later but for now I am going to describe how I feel today, sitting here, writing this from my Parent's brown leather sofa.

Last night I didn't sleep until around 1am, that's usual for me due to anxiety or pain. Night time is a bad time for me as twice in my life I have nearly died in my bed and have only been saved because my amazing parents acted quickly. I have post traumatic stress from the last time it happened (June 2012 when I nearly bled to death in the middle of the countryside) and also a previous incident which I would rather not get into right now. My sleep was filled with night terrors (vivid nightmares) about running away from something scary or trying to shout for help and the words not coming out. I woke a few times and struggled to get back to sleep before I finally got up in the morning . When I get up every day I always ache pretty bad especially my head face and neck and I generally feel even worse than when I went to bed as my sleep is unrefreshing sleep and my muscles hold a lot of tension whereas 'normal' peoples relax. It's a struggle getting up most days due to this and the overwhelming exhaustion but somehow I manage to find the strength inside me. At the age of sixteen I was diagnosed with M.E (or chronic fatigue syndrome as it is also called). Before I progress to talk to you further I would like to request that you do not bombard me with 'miracle cures' or 'diets' because you name it and most likely I will have tried it...and spent a small fortune on it too! Sadly, there is no such thing and it appears to be more about management. Its easy to get caught up and unhealthily obsessed by these things because you are desperate for some relief, it happened to me regarding diet and that's why I must insist you don't comment about food groups as I have a strong intolerance to spices and both fruit and vegetables and therefore I have to exist on mainly bland carbs and protein. This concerns me but I am slowly accepting that I have no choice. Anyway, back to M.E. It's such a strange illness to have because it has always had pretty negative press and in the 80's it was nicknamed 'yuppie flu' .Back then people basically thought it was an illness fabricated by people who wanted to sit around doing nothing all day and many people still hold this belief today. People often say 'oh that's the condition that causes tiredness isn't it?'. Tiredness does nothing to describe the physical, emotional and mental exhaustion that is caused by this illness, not to mention the pain. I find it very hard to remember what it feels like to feel 'tired' in the way a healthy person feels it. M.E exhaustion feels like you have not slept all night, worked out at the gym for three hours, gone to work all day and then gone out clubbing til 3am all whilst battling the flu. It causes so many different symptoms such a sore throat, headaches, digestion problems, dizziness, migraines, allergies, food intolerances, difficulty concentrating, depression, hormone and vitamin imbalances, heat and blood sugar regulating difficulties, unrefreshing sleep, muscle pain and weakness..the list literally goes on and on. Despite being recognised by The World Health Organisation as a genuine neurological disease having M.E is a constant battle not just to deal with the symptoms but also to prove to people that your illness is real and not 'in your head'. It is believed my illness started because of a combination of things. I had a meningitis vaccine which gave me lots of bizarre symptoms and at the same time the bullying got pretty bad and my best friend fell out with me giving me no explanation for her behaviour. Every day I lived under severe emotional stress and in total fear of going to school and this affected my immune system pretty bad and changed my body into a permanent state of fight or flight as adrenaline flooded my body constantly. This state of hyperarousal is a physiological response triggered by a perceived attack, muscles tense, hormones get released, blood pressure increases and the organs especially the heart work harder to keep your body primed for a battle . The body is not designed to constantly live like this and doing so can have a negative effect on your whole system. I was on permanent alert and my immune system could not cope with the stress resulting in me catching every illness going and taking longer and longer to recover. I passed all my GCSE's with a grade C or above which very much surprised me as I had skipped so many lessons due to the bullying. The M.E crept up slowly, getting worse and worse over time yet despite this I stayed on for a levels (at this point having no idea what was wrong with me and just assuming it was stress). Even though I had loads of time off ill I passed my a levels (I even got an A in one) and stayed on an extra year to do an AS level in English Literature. I never properly thanked the teachers who were so helpful and understanding but without them I wouldn't have succeeded in my studies. However, nobody would have had a clue how I felt inside because I was the most extroverted hyperactive loud mouth ever in the sixth form. I guess my over exuberance was because suddenly I felt free of the constraints that had held me in fear for the past two years. Looking back it was silly really because it gave people totally the wrong impression of me, I was perceived to be an over confident energetic person when in truth I was the opposite. I don't usually like to focus on or talk about my M.E much but now I have decided to open up and through these blog entries I am going to tell you bits of my life story and what it is like to live with a variety of health conditions including M.E.

Wednesday, 28 May 2014

The end of a relationship

You name the online article on getting over relationships and there is a chance I may have read it yet here I am writing my own. One word I never really understood until last Summer was the word 'heartbreak'. Sure, I knew the definition 'Overwhelming distress. An unforgettable tale of joy and heartbreak' (www.oxforddictionaries.com) but when it came to actual romance the feeling was something I had only been touched by lightly in my thirty years of life. When it hit me with a bang last July (see the previous blog entry to learn of my experience in fuller detail) it was like a tornado ripping through my world tearing everything in its path and ripping the heart out of my soul. Now it's nearly a year on I feel like I am almost out the other side and I am currently rebuilding everything that was destroyed with the help of a very caring very lovely man. I feel it's important to explain that instead of taking advice on what to do to ease your suffering, you have to go through it naturally no matter how painful. One thing I did learn during my online education was that there are many processes you go through as you grieve the end of your relationship, that they can come in any order and that they are all part of the healing process. I learnt through my own extremely painful journey that it is very important that you allow yourself to mourn this loss and I cannot stress how important this is. You cannot wake up one day and be 'over it' and expecting that to happen can defer or hamper your progress. It really is like a death. You not only lose the actual person but you lose the future plans you had made with them, the lifestyle you had built up with them and the person you became when you were with them. So here is a brief insight into my heartbreak and how I dealt with each process, I hope it helps you in some way or that you can at least feel like someone else has been there.

First of all I would like to say that no matter who put an end to the romance everyone deals with the end of a relationship in a different way. Some people feel the need to distract or pacify themselves with drink, partying, casual sex. Some people (myself included) even post excessive 'fun' photos on social network sites of them having a good time in order to try and convince their ex that they are okay or to try and make them realise what they are missing. Other people quickly move on to another relationship which in my opinion is pretty dangerous because it can cause a transference of feelings that you had for your ex. This means you can convince yourself that you love the new person when actually you are just attaching your previous love to them. The reason for doing this is often because either subconsciously or not you are suppressing or denying emotions you feel unable to cope with as dealing with them is too painful. One of my ex's did this and despite declaring to me that he didn't want children he got the new girl pregnant within three months of us splitting up. I did still feel hurt by this and sort of betrayed but I tried to concentrate on the fact that for me there had been zero spark between us. If I had been madly in love with him this would have totally devastated me and scarred my emotional self for life. As you will read below, following the break up of my last relationship I began to understand the need to seek solace somewhere else in order to dampen your pain. Sometimes the grief is so intense you need a distraction. Three years on I just feel pleased for the guy who moved on quickly as he seems happy and I know I could never have loved him enough or been what he wanted me to be and Its not like I have ever craved children anyway! I am not a big fan of babies to be honest ! That relationship was complicated and I may talk about it in another blog entry but it was in its own way an important part of my life as it taught me so much.

 Now I am going to talk about people who struggle to get over a relationship that meant something, people like me. If like me you were the one to initially end the relationship I believe you will at some point experience doubt and it's likely that you will experience it many times and that it will always be the background emotion in your grieving process. If it helps you, try to imagine it as the sinister noise of the drill when you sit in your dentists waiting room. No matter what else is going on or what other sound is playing nothing can cover it up and it chips away at something you have no control over. I cried for over a week almost non stop and I kept questioning my decision and seeking reassurance from anyone that would listen. My head was a total mess because as you may have read in my previous post it had been played with for months. I admit I signed up for a dating website within two days because I was trying to convince myself that it was okay, that I had done the right thing and (excuse the pun) that there were 'plenty more fish in the sea'. I wanted to know if other men still found me attractive and that I could move on if that's what I chose to do yet I soon began to realise I was just looking for a clone of my ex but without his obvious flaws. I also seemed to only notice the negative points in other men's profiles. Because they didn't know the full story a lot of people couldn't understand why I had finished a relationship with someone I loved so their opinions would often increase my doubts. I then started to focus only on the good memories and I started to mourn the loss of our physical relationship which I realise now was totally lacking in any emotional intimacy. I actually felt hollow, sort of asexual and deeply concerned that I would never ever want anyone to touch me ever again. I looked down at my body and it felt like it didn't belong to me. Due to my past it had been very difficult to let someone into my life in that way and it felt very strange now letting him out. It felt like my body was tainted with memories of his touch and that I would never be able to erase them and let someone else replace them. This made the doubts grow out of control and led me to establishing contact via text and then on his suggestion meeting up a few times. During these meetings he sent me very mixed messages such as telling me not to bend over to pick something up as I would give him 'ideas', calling me 'sweetie' (I know, yuk right?) and then saying he hoped that the sexual attraction would 'wear off' and declaring 'I can't be in a relationship right now'. The mixed signals messed with my head unbelievably, it literally sent me crazy (I hate that word). I began to want to try our relationship again and made it clear this was my intent yet he never gave me a clear response. I kept going back for more hurt, for more unbelievably confusing conversations which he purposely turned into arguments so he would later have ammunition to blame me for the fact that it would never work as we 'constantly argued'. He danced around and around the question of us getting back together, never actually speaking the words and he successfully manipulated me into taking the blame for the entire relationship going wrong.. Bang.....another grieving process, blame.

Blame is a strong emotion in itself but it can be interlaced with many other emotions  especially intense disappointment. I blamed myself for loads of things and he got me to tell him all my faults, all the things I had done wrong. He also made me apologise for these. As I sit here now I am disgusted I did that, that I let him do that to me, that I almost begged him to give me another chance saying I could change. However, everything I did was against the advice of everyone around me and I have to say I think it's very important that you do what YOU feel you need to do. It's your life, it's your future and it really is better to feel that you did everything you could and you followed your heart, even if it made the break deeper. I think its only the things you didn't say, the things you didn't do that you regret. So yes I made the heartbreak worse but I did what I had to do and I am proud of that.

I had one last phone call with Mr X, this was the one where he got me to take the entire blame but it was also the one where his true colours came out. It was like a different person was speaking to me, the person I had always worried he was. I put down the phone and cried so hard I thought I was going to pass out. I called my friend and he left everything and literally ran to my house to be with me. This showed me what it truly felt like for someone to care about you. That's when it hit me like a lightning bolt. In that very second my love for him became a pile of smouldering ashes as I realised what he had done to me. I realised I hadn't really wanted him back, I had wanted the lifestyle back. Over the next few weeks came the realisation stage where I began to realise that my relationship with Mr X had been nothing but disappointment after disappointment and that my decision had been absolutely right but something that I should have probably done months before. Up until this point I had defended him to everyone around me. No matter what he said, what he did, I either took the blame myself or gave an explanation for his behaviour. As I became more honest with myself and looked at the massive negatives, I saw him for what he was, a little boy trapped in a man's body. When I told people the full story they said I had made a lucky escape and I now realised they were right. I started to understand that it wasn't me to blame, sure I had my own faults and I accepted them but a lot of them were caused or at least made worse by him. Everything that I explained in my previous post (Narcissism , a clever chameleon) came to light and suddenly it was like I had found the missing pieces of the jigsaw. I even started to question what it was I loved about him because to be honest after the first three months when he put on his best behaviour, there wasn't a lot to him. After the realisation phase the sadness phase resurfaced but this time it was a sadness at myself for letting someone so cold into my life, my heart, my home and my bed. Throughout the entire process the sadness is truly and utterly overwhelming. It is such an intense feeling of hurt I cannot begin to describe it but I wouldn't wish it in my worst enemy. It is all consuming and it does actually feel like someone has reached into your chest and removed your heart. It feels like it will never heal but if you let the people around you into your life at this time it really helps.

Eventually came anger and lots of it. Anger at him for being such a cold hearted prick and anger at myself for being with someone like that. I wanted to shout at him and tell everyone what he had done (or more to the point, not done). I wanted to hit him and scream at him.The thing I still struggle with is the fact I gave almost two years of my life to someone who just didn't love me. I still have that anger today, it's fading slowly but I think I may hold onto it for a while yet and I have accepted that. Acceptance is a good thing, it's almost cathartic and it allows you to start to trust again, to want to share your life again. I had made the decision to stay single for a couple of years because I felt I would never get over the pain and if I did I knew I could never go through that kind of hurt again yet I write this as someone who has a new man in her life. This twist in my love life was totally unexpected and a strange yet lovely surprise. This man is someone who totally adores me and who I know will never ever hurt me.  So let me tell you that no matter where you feel you are right now, no matter what you think, there is light at the end of the tunnel and eventually you will accept its over and you will fall out of love.

Wednesday, 30 April 2014

Narcissism....a clever chameleon

This is my story of falling in love with a narcissist. I say love, when I should really say unreciprocated love, because as I have learnt to my extreme disappointment a person with narcissistic tendencies cannot truly love like a regular person can. Narcissicist Personality Disorder is an extremely complex condition and whilst I cannot diagnose or formally label someone with it I can recognise characteristics in people that may suggest they have similar issues. So just to be clear I am not labelling someone with a psychiatric condition, my views are merely speculative and have no qualified clinical confirmation. Dr Craig Malkin wrote that 'The most glaring problems are easy to spot -- the apparent absence of even a shred of empathy, the grandiose plans and posturing, the rage at being called out on the slightest of imperfections or normal human missteps -- but if you get too hung up on the obvious traits, you can easily miss the subtle (and often more common) features that allow a narcissist to sneak into your life and wreak havoc'.  Well, one walked into my life two years ago and left it desolate so I feel the need to share my story with you in the hope you can prevent yourself falling victim to the devastation they cause.

My narcissist (let's call him Mr X) made me fall for him rapidly and deeply and in doing so he broke my heart, my soul and nearly broke my family apart. It is only now that I realise I wasn't in love with the genuine Mr X, I was in love with a dream, with the person he was when we first met and that person just didn't exist.  Mr X spent virtually his entire life at work, (workaholism is another trait of narcissists but more on that later) . When I met Mr X (ironically through online dating) I was incredibly vulnerable, my life had been full of emotional drama, I had been bullied, abused and my trust in men had all but evaporated. Now I have escaped the relationship all of this has been inflated and I have been left feeling like I am unable to trust and I am ripped apart inside at the choices I made and the way I let someone treat me.It is really only through feeling the love another man and seeing what it should be like that I have realised something was seriously wrong with Mr X. You see infidelity in a relationship is devastating but it is favourable in comparison to narcissism because cheating is what it is, however, narcissism is a clever chameleon and it sends you crazy trying to work out what is going on.

I will take you back to the start. At the beginning Mr X was so attentive, so caring and my e mail inbox or mobile would fill up on a daily basis with his lovely messages. We chatted about everything, I told him all about my past, my health issues and my life in general but looking back he barely divulged anything about his own. I told him about the treatment I had received from the men in my past and he branded them 'heartless dicks', little did I know he would turn out to be the worst 'heartless dick' to enter my life. I had been single for a while and as my previous relationship had been stifling I was cautious about meeting him, but he was so patient he waited at least two months for me to say yes. When we met in town he was fifteen minutes late (this was to be his irritating signature, even not arriving at the time I requested before my Grandads funeral).  At first I was taken aback by his self consciousness which was evident by his slightly hunched up appearance, but his posh voice and smile soon won me over. He wasn't my usual type, being a bit lanky and not exactly masculine but we had such a laugh that day I fell for his strange ways. I thought I had found 'the one' and I can honestly say I have never been happier. The first few months were lovely, I had a permanent smile on my face when I talked about him . Looking back some of the issues which I will discuss later were evident during this time on a smaller scale but I chose to ignore them as I was overwhelmed by my feelings for him. At this point I believed all the things I had never before experienced (lust, love, trust, honesty to name a few) were reciprocated and I got through some bad times such as my grandads death by floating by on cloud nine. The first few months were as I said picture perfect and to confirm this is typical of a narcissist I quote an online article I recently read (author unknown) which stated 'Only when the narcissist is in the overvaluation (idealization) phase of his relationships, does he experience the convulsions that he calls "feelings", these are so transient and fake that they are easily replaced by rage, envy and devaluation'. As I will explain later the transformation rapidly happened to me with Mr X.

Things were just so lovely and exciting, he often talked about lovely places to live around here. He tried to build up a picturesque image of our future in my mind and for the first time in my life I let him. However Mr X suddenly announced four months in to our relationship that if he got 'the call', (an offer of an amazing job or opportunity anywhere) at anytime he would basically go as it would be 'too good to turn down' and that it was never his plan to stay in Leicester. From day one I was totally honest with Mr X about my illness and the fact that I would never want to be away from my parents as they meant too much to me and I couldn't cope without them. If he had really took this seriously, if he had really listened then what on earth was he doing starting a relationship with me if he was just waiting to move away? He had lived in Leicester for a few years after moving here with his ex yet he still referred to his parents house six hours away as home and I found it odd all his bills went to there, he got parcels sent there and even kept his passport there. He constantly referred to it as 'home' or talked about meeting up with the 'guys' (people he was friends with as a young boy) and it was the only time I saw his face show a glint of happiness. Love anchors you to a place, love means you want to be where those you love are. They say home is where the heart is and it was clear to me that his heart was with his career and his childhood memories. I tried to bury this fear but it sat within me, a nagging monster slowly eating me up inside. I often voiced my concerns but he clearly didn't note them as every few weeks he would tell me about emails from brilliant companies trying to 'poach' him and friends who worked in London who were being paid three times his already 'unbeatable' salary..I asked why he couldnt move to a better company in Leicester yet he said 'because they couldn't afford me' or 'I would be a threat to them'. Like I have already said Narcissists have the uncanny ability to believe their delusions, he certainly did.

I previously mentioned that workaholism is a common secondary issue in certain types of narcissistic personalities well work for Mr X was the one place where he felt in control, it gave him a sense of power which was addictive to him in same way he was to me. I went to his place of work once and it was frightening to see that it was actually more like home than his flat. He did everything but sleep there and I felt like I was in his territory as he was very protective of it. When talking about work (and that was just about his only topic of conversation most days) it was as if he was the boss and there was nobody else in the picture, it was his company, his rules and only him who could do the job right. He spent more and more hours there as the months went on claiming that he had an exhausting workload due to having to complete or redo other peoples work to get it up to standard. Whenever I commented on his job I got the same reaction; he got irritated and he gave the impression that he was bearing heroic responsibility for the company he worked for and that he had to take care of everything because his co-workers were undependable, uncooperative, or generally useless. He ignored or would denigrate the abilities and contributions of others and complain that he received no help at all, constantly trying to gain admiration for his self-sacrifice for the good of others. I again quote an unknown online source here to back up the fact that narcissists are very clever at convincing you they are right because they believe they always are. "When the narcissistic defence is operating in an interpersonal or group setting, the grandiose part does not show its face in public. In public it presents a front of patience, congeniality, and confident reasonableness."Both myself and my parents were at times totally convinced by his reasons for constantly being at work and his friends would have had no clue who they were really dealing with as he covered it well. I observed him with them on several occasions and he just hung in the background quietly and smiled at the right times, interacting as little as possible. To me he looked awkward, sort of 'out of place' and the only time he came alive was when he again was taking about his job and moaning about his 'useless colleagues to friends who were in the same business.

Another aspect of his strangeness that is common in people with narcisstic personality disorder is the fact he had no sense of time and every time he was due to come over I would sit waiting for him for up to an hour. Psychological studies show that people who are chronically late to appointments are narcissistic, selfish, and have no concept of the value of others' time and Mr X was ALWAYS late. There was rarely an apology or warning that he was running late and if I ever asked I got some emotionless reply like 'sorry I got caught up finishing a job'. Whenever he appeared at my door he was usually looking at his phone, or would be within five minutes of coming in. I would be so happy to see him and start talking excitedly yet he would hold up his finger to me like I was a child and say 'Wait a minute sweetie' whilst he finished whatever he was doing. I started to feel pretty low because I would always make an effort with my appearance, especially if we were going somewhere important like a wedding but until I mentioned it he rarely complimented me. When I finally said something it would be a quick glance up from his mobile phone and a 'you look nice sweetie' before going back to the more important task. Looking back he rarely looked at me longer than a couple of seconds and he never had that 'look of love'. I don't think it was just me he was like this with, I honestly believe a woman could have stood naked in front of him in the middle of town and he wouldn't have noticed. It was at times like he was living in his own little world, a world that was never going to allow any true emotional human intimacy. His ex girlfriend had called him 'the tin man' as she had said he had no heart and no emotions and boy was she right. On several occasions he even joked that he only had three emotions 'anger', 'stress' and sometimes 'happiness'. It turned out to actually not be a joke at all, he had such a limited spectrum of emotions it was at times like trying to converse with someone who was in a hypnotic trance or high or some kind of drug.

Whatever he chose to believe I was always bottom of the list because work was his one true love, his computer never questioned him, it never asked for anything back. The only time I seemed to get any kind of emotion from him was when we were physically intimate and we never did any of that cuddling you are supposed to do after sex or those little chats you have about life, feelings, nothing in particular.  When I brought it up I was always asked 'well what in particular do you want to chat about?' . We didn't talk, I talked. He said he was listening but it was hard to feel important when he had his phone in his hand or one eye on the TV yet if I mentioned it or questioned it was insinuated that I was imagining or inflating these issues.

Caroline Van Kimmenade wrote 'Trying to understand narcissists from the perspective of unconditional love is endlessly confusing. It’s a flower with an endless number of petals: “they love me, they love me not, they love me, they love me not…” Think back to a time when you were in love with someone, and you weren’t sure whether that feeling was reciprocated. It’s agonising, right? Usually though, that uncertainty wouldn’t last too long. At some point, you’d get a yes or no. With a narcissist, you’ll never get the answer, because it’s not unconditional love to start out with anyway. Whenever you behave the way they want you to, they love you, and when you don’t, they love you not. Yet if you ask a narcissist whether they love someone, they might well say “yes”. Translation: “Yes, I love this person like an appliance, when they do what I want them to”.'

After the first few months not once did I feel truly loved by him, truly treasured and wanted. I often communicated this to him but his response was that I was being hyper sensitive due to my low self esteem. I asked him what he loved about me and he replied 'you are pretty and kind', it was a generic answer really and now the honeymoon phase had long gone the only time he ever said I love you was during intimate moments. At first my phone would beep with a reply text within minutes but now he would sometimes take hours to reply claiming he was too busy to look at his phone, which he appeared to have no problem with when he was in my company and someone text him. Life had become a battle for his attention, a battle to try and get him to love me or show me love, I was constantly competing with his mobile phone, his job and his friends. I am sure in his own way he loved me, but as Caroline Van Kimmenade explained it wasn't in the way a human being loves another human being. I think I started using sex as a way of desperately trying to get some kind of emotion from him. It is only now that I have experienced true emotional intimacy and security that I realise I had never had it with anyone before unless it came with a price and I certainly had none with Mr X. It is the most painful feeling even seven months after we spilt to realise that for the first time in your life you gave everything you had to someone who was just a shell, a robot.

Things finally came to a head fourteen months after we first met. The time we spent together had got less and less. He looked physically ill from the amount of time he was spending at work. He was working 16 hour days nearly every day and when he did see me it was although he couldn't wait to go home or go back to work. He was so tired he almost fell asleep when we were being intimate on a few occasions. I saw him only three times in 5 weeks. I got so low due to my physical health and the worsening of my depression and anxiety that I had a massive panic attack and felt like I didn't want to be here anymore. I text him and told him how low I was and that my parents were calling the doctor . He text back something Iike 'you'll be ok' and I didn't reply as I just felt low.  He didn't text me again until the next day, fourteen hours later, with a 'how are you today ?' ... I could have been dead or in hospital for all he knew. I asked why he didn't text again or come over and he said 'there was nothing I could do and you would never have actually done anything' . He was right I wouldn't have done anything silly but that wasn't the point. He seemed so blaise. A couple of weeks later he said he thought I was saying I didn't want to be he anymore just to get his attention and to get him to come over. I was disgusted, I couldn't take it anymore and I snapped, I said I needed a break and this ended up being permanent after a heated conversation on the phone when he said stuff I just could not get past. I don't I know what kept me tied to the relationship for so long but like drug addiction there is something highly addictive about 'the chase' even when it is all consuming it keeps you running back for more. I have always wondered what keeps people in physically abusive relationships but my experience has certainly enlightened me. It's definitely not as simple as saying its because they love the person who is abusing them. There are two well known sayings that perfectly illustrate  'the thrill of the chase' is something I have just talked about and the next one one is 'treat them mean keep them keen'. In no way would I want to underestimate the damage caused by physical abuse but abuse disguises itself under many different cloaks. I myself have been in an emotionally abusive relationship and I know how much that can mentally scar a person. Yet through my experience with Mr X I have concluded that it is indeed love that keeps you anchored to these destructive relationships. However, it may not be love for the actual person that cements you to them but a love or addiction to the 'chase' and the cons at battle to get them to love you, to 'see you' . They treat you mean and it keeps you keen. Keen to change them, keen to 'save' them, to make them love you the way you want them to. Each time they give you a little bit of 'conventional affection' it is like a glimmer of light in the darkest place. It goes on like this, a vicious circle and like a narcotic addiction you know deep down it is wrong yet you can't break free.

When we spilt up despite his promise to always be my friend and to be there for me no matter what, he disappeared into thin air. Stupidly this was the one thing I had believed he would keep to. I think his silence was his way of hurting me either that or his way of burying his head in the sand and hoping I would get the message and go away so he didn't have to spell it out. People with narcissistic tendencies tend to create solipsistic or "autistic" fantasies, basically they live in their own little worlds (and react with affront when reality dares to intrude) and like I have previously stated that's certainly true of Mr X. I had become of no use to him because I was now the enemy who had attacked his precious career aspirations and brought up barriers he was never going to be able to break back down.The success oriented narcissist will keep you close to him for as long as you are useful and once you do not have anything more to offer and he has taken all he wanted from you, you are history. Nobody can honestly say they like receiving criticism but people with narcissism are hypersensitive to it because they often have fluctuations between extreme confidence and extreme insecurity. They often imagine non-existent criticism and will act out by shutting down and sulking, or acting out in a rage. A perceived attack or criticism of the narcissist is not dealt with in a healthy, normal way and in his mind, you are either with him or against him and there is no in between. Everything is personal and there is defensiveness and reactive anger if they are not recognised or if they can't get their way. The way he spoke to me when things weren't going his way and after we had broken up was a clue to his true self. I was made to feel like a child asking too many questions, questions he was never going to give me answers to . Ask me one question at a time, you are confusing me' was his request. I was accused of 'attacking him' and causing him to be 'emotionally drained'. This was because I kept pressing him for answers and I realise now I was never, ever going to get a straight answer from him. However, I kept running back for more heartbreak and only now do I see now Its because I was desperate to get back the Mr X I had met that day in town, to get the me back that I was during those first few months, and like I said that guy didn't exist.

I realise now that this man had been everything yet nothing to me, he was incapable of being anything to anyone, I just didn't want to admit it. I had spent months defending him, making excuses for the fact he didn't care and that he made me cry. I had given everything I had to Mr X but what had he given me back apart from a little of his time, meals out and oh yeah a nervous breakdown. I am sure if he read this he would call me 'crazy' and think it was all in my head and despite it being laid out here in black and white he wouldn't accept responsibility. When a story is about something negative that happened, it will never be the narcissist's fault. But I have nothing to gain by writing this. Nobody is perfect I am not without my own list of flaws that I will openly admit to. However, my biggest flaw in this relationship was letting someone else project theirs onto me, making me doubt myself.