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.

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.