Don't Blame Me For What You Cannot See (mental health awareness)

A family member recently said to me that if he knew somebody with anorexia he would tell them to 'just try and eat something' and that he would ' reassure them that they weren't fat'. It came from a good place, by a good, kind person but it blew my mind how little people understand about mental health conditions. I tried to explain that when a person with an eating disorder looks in the mirror they see a completely distorted over weight person, even when their bones are visible and they are dying of malnourishment. He still didn't get it. It made me think. In the hope of gaining understanding of my own mental health issues ( I have PTSD, PMDD and the associated anxiety and depression that comes with these conditions) I've been advised many times to go down to the doctors without make-up on or following a panic attack when my eyes are all puffy and swollen. However, hearing my family members thoughts on eating disorders made me realise that even when something caused by a mental health disorder is very visible on the outside people can still fail to understand. Why is this?

An ex partner once said to me 'you're very passionate when talking about how other people don't understand your illness aren't you?'. If these words had come from a supportive place I would have taken that as a compliment but they didn't, so I didn't. For a long while he pretended to but he didn't understand any of my conditions and never had. He was trying to make me question myself, and he succeeded. These words stuck with me though and I started to see it as a huge positive instead. Yes, I am passionate about gaining understanding, and rightly so. We live in a world where the estimated number of people living with invisible health conditions is rising yearly and these people struggle daily trying to get people to see beyond their external appearance. A shocking statistic is that one in fifteen people will make a suicide attempt at some point in their lives. Mental health conditions are at an all time high pushing the NHS to breaking point as they fail to find beds in over crowded and under funded psychiatric wards. There has been so many cases of suicide recently in the celebrity world and finally we seem to be discussing it more openly yet people are still shocked when the next smiling, 'happy' reality tv star/actress/singer takes their own lives. Depression and anxiety are illnesses the same as any other serious illness but the disease is located in the brain, out of sight, not on show.  Cancer kills people but how can we not understand that when it ends in suicide so does depression. We wouldn't dream of telling someone to think their cancer away so why is it deemed acceptable to tell a sufferer of depression to 'think of something nice' in order to make themselves well again or to 'switch it off'?

Apart from choosing what we put into our bodies to nourish them we have little control over our own internal organs. If someone has a problem with the way their stomach is functioning we don't question or blame them so why do we question people who have an illness that is simply caused by the way a different organ in the body is functioning? why do people assume that the brain is different? is it because we use this organ to think so people believe we can simply think it better or imagine it away? The brain consists of three main parts and it is such a busy organ with so many jobs to do it's no wonder it gets overwhelmed. I try to imagine it as a huge version of Birmingham's spaghetti junction with cars zooming all over the place. Chemicals produced within the brain (our major organ) are one of the main causes in the majority of mental health issues. Our moods are affected by how these chemicals are produced, the amount that is produced, how they are regulated or our sensitivity to these chemicals and we have no (or very little) control over these factors. Of course, exercise, relaxation and thinking positively can all benefit our mental health but in the same way that they cannot cure cancer, they cannot cure depression. So it does make me angry. It makes me angry every time someone questions what I have to be sad about (when sad doesn't even come close to the feelings created by this illness), or when someone says suicide is selfish, or when people tell me to 'just think positive'. A person with depression doesn't want to feel depressed in the same way that someone with a bad migraine doesn't want a bad migraine. The migraine sufferer can take tablets to ease the migraine but ultimately they have to ride it out and hope that it eases off. The same applies to a person with depression yet the medication doesn't always work.

I have tried many times to describe both anxiety and depression to people who have never experienced it. With depression I use this description a lot. If you are in a bad place with your depression you could sit in front of the tv holding the winning lottery ticket and still feel nothing. Of course, unless your depression is caused by financial difficulties then all the money in the world wouldn't make any difference to your depression but I am trying to say that something exciting, a dream coming true, wouldn't make any difference to your mood in that very moment. Another example is your perfect wedding day that you have imagined your whole life. There you are standing next to the love of your life and everyone is smiling and happy and beautiful yet you stand there feeling lost, empty and hollow.  Imagine how this feels and the guilt and all other associated feelings that stem from feeling like this on such an important day and yet it has nothing at all to do with the person you are marrying or the ceremony but everything to do with your illness and again you cannot control it. Depression is an illness not just an emotion. It is not just 'feeling sad', we all feel sad from time to time, we do not all feel clinically depressed. Depression is extreme sadness, extreme low mood, emptiness, worthlessness, hollowness, fear, self loathing and more and it hides itself well which is why we are so shocked that it takes the lives of comical, seemingly happy people such as Robin Williams. I have actually found that a very high number of people with severe depression are extremely creative, artistic or effervescent people that we perceive to be extrovert. This form of depression has been labelled as 'smiling depression' where the person appears happy while internally suffering with deep depressive thoughts. They wear their smile like a mask but it is simply a defence mechanism for them to carry on their daily duties. Suicide is a particular threat for these individuals because unlike those suffering with classic depression (and the associated lack or energy and motivation) they have the energy and ability to plan and follow through. This is why so many celebrities whose careers are built on entertaining shock us with their sudden suicides.

When it comes to anxiety it seems to be harder to explain but easier for people to understand and this may be because everybody worries to some extent. I trawled the Internet in search of a good description and here are just a few I found. One user described her generalised anxiety disorder as if she tripped and the moment where you don't know if you're going to catch yourself or not is how she feels all day long. Another similar description was the feeling you get when you tap your pocket to get your wallet, and it's not there but having that feeling constantly and being unable to get rid of it. Anxiety to me is like worrying about every single possible thing, all at once. It is when your mind imagines the worst outcome to everything and replays all the distressing things that have ever happened to you over and over again like a bad song stuck on repeat. It is thousands of questions in your head at once and yet there are no answers. A lot of anxiety sufferers have also experienced panic attacks. A panic attack is a sudden wave of intense overwhelming fear that can strike out of the blue, without any warning, with no clear trigger and can even occur when you are relaxed or asleep. It is charactised by its debilitating intensity and symptoms include but are in no way limited to, a pounding heart, shaking, feeling detached from your surroundings, hyperventilating (over breathing), feeling light-headed and believing you are going to die or go crazy. When I have them I can feel completely detached from my body and I am physically unable to speak. I feel like I have fallen down a deep hole I can't get out of then the crying starts and gets so intense I struggle to breathe. I see no way out and I feel like I am literally losing my mind. After the panic attack I feel exhausted but I do feel some relief at letting out the emotions.

I have lost count of the amount of time friends and family have told me to 'just stop thinking about it' when I am worrying excessively and my anxiety is severely affecting me. The best thing I have found to say to people is to try 'the pink elephant experiment'. For the next 30 seconds you can think of anything you want to but whatever you do don't think of pink elephants. Did you manage it? I often take it a step further and this helps them understand not only the inability to switch off unwanted worries/thoughts but also the fear anxiety creates. Now, Imagine you are in the house alone at night and you know that an escaped murderer has just broken in and is carrying a knife. You must not think about that murderer, imagine he isn't there. Impossible, right? Well that is anxiety at its worst. Extreme fear and unwanted thoughts you can't get rid of. In psychology this phenomenon is called the 'ironic process theory' whereby deliberate attempts to suppress certain thoughts actually make them more difficult to ignore and more likely to surface.

Anxiety disorders are also caused by hormones that are released in the brain. Anxiety becomes a problem when areas within the brain either function inappropriately or fail to function at all. This can be caused by an abnormal fight or flight response which is a physiological reaction that occurs in response to a real or perceived threat. The release of hormones such as adrenaline and cortisol prepare the body to react to an extreme danger and it is believed that the fight or flight response was developed within the human body when our ancient ancestors were around. The scene I always remember being told about was a caveman facing a hungry tiger. What's does this caveman need to do in order to survive ? He needs to either fight it off or run away and in order to fight or flee the body must prepare itself for action by producing hormones that create a whole host of symptoms. In this modern age we are less likely to be faced with a tiger but we still encounter real or imagined threats or stressors and our bodies respond in the same way as if a tiger were in front of us. Now, if you have an anxiety disorder your fight or flight response is malfunctioning in a way that causes you to experience the effects of the hormone release but without a justifiable cause. It is basically triggered when no or very little danger is present. Using MRI scans scientists have shown abnormalities within the brains of patients with both Major Depressive Disorder and Social Anxiety Disorder, but not enough research has been done yet and it is still on going. As with depression it is the brain, an organ, that is not functioning correctly and yet again sufferers are made to feel weak for struggling to control it.

I realise that I have to accept that if someone hasn't experienced serious mental health issues themselves then they will struggle to understand yet it is still frustrating. A bit of reading up, of listening to people's stories, of asking questions and of opening your mind is all it really takes. If you have time to watch TV, or to read a newspaper, to browse Facebook or talk to someone on the phone, then you have time to learn about mental health. YouTube is full of information as is Google. Research and love. It is just two things but it could save someone's life, especially if you are the one that they turn to for support. Take care people and thank you for reading. X

The 'Don'ts' of Chronic Illness

Don't ever think that my tiredness is anything like the tiredness you experience. If you have ever had the flu (and I mean the real flu, not man flu or a heavy cold, but the kind of flu where you would literally not have the energy to walk into your garden and pick up a £50 note), then maybe you will understand a bit more. The headaches, the sore throat, the aching limbs, the weak muscles, I could go on. Imagine having the flu and trying to live your daily life whilst also battling depression and anxiety, and the other physical problems I have. 

Don't ever compare my illness to other people's different illnesses as a way to highlight the fact that I don't push myself enough. I push myself every minute of the day from the moment I open my eyes. I push myself to get out of bed despite the fact I feel worse than when I went to sleep the night before, despite the fact my entire body hurts, despite the fact my throat is swollen and I feel like I have fallen down a flight of stairs and not like I have had 8 hours sleep. I push myself to get dressed, I push myself to talk to people, to fight through every hour of pain because I refuse to give up. Some people with my illness are housebound or have to use a wheelchair and if I push myself too hard I could end up like that and the thought scares me terribly. My illness goes through ups and downs and relapses. I try to avoid relapses but I do tend to do too much especially when I am anxious or depressed. Have you ever considered that it's not even about pushing myself to do stuff in order to 'make the most of life' ? It's worth knowing that when I say I can't do something then I sometimes I physically can't do it. It's all well and good saying I should 'make' myself come out because it will do me good but if I have overdone it or I am having a flare up I might not even be able to move  so getting out of the house would be physically impossible. When people say 'it's about thinking positive' or 'there is no such thing as can't' it feels like they don't understand at all. It feels like people underestimate the pain, the exhaustion and the weakness. Twelve years ago I didn't push myself like this and spent nearly every day in my pjs, lying on the sofa watching TV.. so I've come a long way but I have had to sacrifice my health because of this and my symptoms are actually far worse now than they were back then. 

Don't assume that I am ignoring you because I don't answer the phone or I haven't responded to your Facebook messages, to your texts, or to your whatsapp chat. Sometimes I can't cope with all the information because it overwhelms me. I struggle to explain how I am after writing a long text message/email or having a phone conversation. When I am writing , either on an electronic device or on paper, my eyes blur, my hands ache and I get shooting pains down my fingers and neck. I was diagnosed with repetitive strain injury before touch screen mobiles came out. Typing on my mobile back then actually caused it, so I have to be extra careful. I also can't rest as I know I have to keep up with the conversation so my anxiety ends up being aggravated. If I spend too long staring at the screen whilst concentrating then the next day my vision is affected and it's like I'm looking through slightly frosted glass and I have pain in my actual eyeballs and all over my face. I have had to have lengthy, important phone conversations in the past and afterwards been literally unable to talk from exhaustion and throat pain and so weak that I have burst into tears and almost collapsed. This can also happen during conversations with friends which is why I avoid phone chats. A phone chat is just as tiring as an actual face to face conversation. 

Don't forget to ask me if somewhere is too loud or busy. One of the things that drains my energy and exacerbates my exhaustion is noise, social interaction, different lighting, certain smells, and any other kind of stimulation. Busy places will tire me out far more quickly and usually just looking at a large crowd of people can totally exhaust me. I am hyper sensitive to smells and sometimes certain smells can make me feel sick or make me dizzy or give me severe headaches. Often these may be odours that other people don't notice or can't even smell. Lights are very very disorientating especially energy saving light bulbs, and lights in hospitals, shops etc. If I have to sit opposite a window that has light coming in it will affect me very negatively, especially if I'm talking to you and you are sat in front of it.  When I have an hours session with my therapist I am unbelievably tired due to the long conversations but also due to the horrible lighting. I come out and I struggle to speak and my eyes feel blurry and heavy. Lights are the worst, they make me feel physically sick. I'm finding it difficult to even explain this one.

Don't get angry at me because I have to know our dinner or lunch plans in detail, specifically what time we are eating. A lot of the time (markedly worse at certain times during the month), if I haven't eaten for a few hours I get shaky from low blood sugar (reactive hypoglycaemia), and struggle to even hold a knife and fork. My words slur, my eyes blur and I feel disoriented and confused. I have even been accused of being drunk. It's embarrassing for me but it's such a scary feeling because it can be dangerous and it's the main reason why I don't cook for myself.

Don't moan at me because I struggle to make plans and when I do they are like a military style operation. I don't know how I am going to feel next month, next week, tomorrow or even in the next hour. My illness is unpredictable and erratic. This is probably one of the most frustrating parts of chronic fatigue because it kind of takes the fun out of things that are supposed to be enjoyable. Spontaneity is exciting but it is so hard for me. I need to know where we are going, what time we will get there and back, what we will be doing when we are there, what I need to wear, if there is lots of places to sit down and will it be noisy because like I have already said, noise really affects me.

Don't forget that although my illness doesn't define me, it does restrict me, and I hate that. I used to be really active so that just adds to the frustration.

Doing more than one thing at once is exhausting but this doesn't mean I don't do it. So don't be surprised if I struggle to listen to you while I am typing on my mobile or if I can't follow a sat nav because I am taking in all my surroundings as we whizz past them in the car, whilst the radio is also on in the background.

Don't hide my updates on social media because you think that they are too negative and they 'bring you down'. Reality check: life can be shit at times, if you want sickly sweet sunshine, rainbows and happiness, watch Disney. If you don't want to read my updates then 'unfriend me', both online and in real life. The world is so full of fakery and all people do when they only post positive, sugar coated updates is add to this false world. As Ronan Keating once sang, 'life is a rollercoaster'.

Don't always believe me. I know that sounds crazy but I do lie. When you ask me if I'm getting tired or if I want to go home yet I will often deny how bad I am feeling because I don't want to 'give in' and most importantly I don't want to ruin things for you. I want you to enjoy it when we go places, I don't want to be a killjoy. I feel like I am letting you down if I can't do all the things that you want to do or see all the things you want to see. So I'll often carry on and deny that my legs feel like jelly and I'm struggling to stand up or even see properly. I might say I feel bad but I probably won't say just how bad. 

Don't forget to tell me if you have a virus and we are supposed to meet up. I have a low immune system and if I catch what you catch it will take me a lot longer to get over it and it will cause a flare up of my other symptoms.    

Don't forget that what you see is probably not what you get. I usually end up on the sofa or in bed when I have spent time with you. This is because I have chosen to use my energy on having fun with you. If you want to understand more then research the 'spoons theory', because this explains how people with chronic pain and illness cope each day. I have a limited amount of energy each day and I usually pace myself as much as possible, resting in between activities. I don't do this as strictly as I should which is why the occupational therapist discharged me at the hospital. They wanted me to time EVERY single activity in my day and stop each one just before I got tired or felt pain, and I refused to regiment my life like that because to me that wasn't a life.  However, if I meet you for dinner plans I have probably just woken up from a long sleep or rest and getting ready has triggered all my symptoms again. So excuse me if I am flustered.

Don't judge me on what I did yesterday or what we did together last week or last month. Like I've said, every day is different. So we may have walked through town last week but today I can't walk as far or walking will affect me a lot more. A walk that is short for you is not short for me on a bad day. It's like that saying, 'try walking a mile in someone else's shoes'. 

Remember that if my parents didn't do everything that they do for me I would probably see you a lot, lot less and we wouldn't do a great deal. If I cooked, cleaned, tidied, drove etc then I'd have no energy to leave the house. For everything that they do for me I am truly grateful. I am also truly grateful to have you in my life and for the fact that you are reading this and trying to understand. I know at times it is difficult to deal with or you don't know what to say, but just being there and being you is what makes me happy. 

Male depression and why we need to get men to speak up not man up'

Suicide in men has been described as a 'silent epidemic'. In comparison to women, men have a shockingly high death rate from suicide. In fact they are three times more likely to kill themselves and the suicide rate amongst men is at it's highest since 2001. Self-harm rates have tripled and there has been an 165% increase in prescribed antidepressants in England since 1998. However, the majority of prescriptions written for these medications are written for women. Today, around 13 men in the UK will kill themselves (according to latest figures 4,858 men killed themselves in 2013) and the question I want to ask is why is this number so high?

The Samaritans lists 'emotional illiteracy', 'relationship breakdowns', 'unemployment' and 'the challenges of mid-life' in the top 6 reasons for men taking their own lives but I blame society for constantly reinforcing gender stereotypes. Last year a man I know tried to take his own life in a very disturbing, planned out way.  Fortunately he didn't succeed in his attempt and is now recovering well. The saddest thing was that he had felt unable to confide in anyone about how he was feeling. It hurt me to realise how alone with his feelings he must have been. Suicide is not as some people say, 'selfish'. Imagine how low you would have to be to get to the point where you think removing yourself from life is the only option. Depressed people may believe that the world is better off without them or that death is the only way to escape their intense emotional pain. Because that is what depression is, pain. The feeling of being stuck in a vacuous deep black hole that is consuming you. I know it well yet thankfully I have never attempted suicide. The man I know was so deeply depressed he planned his suicide in such minute detail over several weeks yet he couldn't speak to anyone about his thoughts. Why is this?

We live in a world so desperate for equality and so against discrimination yet it seems that men are still expected to conform to society's outdated stereotypes of masculinity. Rarely does society actually emphasise with the causes of male depression and instead many different derogatory sayings are thrown at men who are in touch with their feelings. The amount of times I have heard people say 'Man up' , 'grow some balls'  or 'only girls cry'.  Far less men are actually diagnosed with depression than women and the reason for this may be the fact that men are less likely to visit the doctor to talk about their mental health because they want to assume the alpha-male role and appear invincible. More women than men complain about sexist behaviour yet the fact that society still says 'real' men should be stoic, independent and strong is just as bad if not more harmful than saying that women belong in the kitchen. This intense pressure means that most men feel responsible or in charge of their families' lives either financially or as 'head of the household' and they may worry that admitting that they can't cope would be a sign of failure. This is the biggest misconception because in reality depression has absolutely nothing to do with being weak or having failed and is usually a result of a chemical imbalance in the brain or the pressures of the modern world. Winston Churchill was a great leader yet he suffered massively with what he called his 'black dog' of depression and many highly talented and successful men suffer with depression.

It seems that there is a lot more awareness of the different types of mental health issues that affect women yet little to nothing about the issues men face. For example, the last decade there has been more awareness and understanding of Post Natal Depression in women yet if a man claims to have it he is laughed at. Admittedly a man doesn't have the same biology as a woman and therefore doesn't go through the same hormonal and body changes but having a baby is a huge lifestyle change for both the sexes. Changes affect people in many different ways and although it may be far less severe than the female PND a man can struggle after his partner gives birth. A baby brings about many life and relationship changes and men can feel like they are pushed to the back of the queue or that they aren't needed in the same way as the mother is. Some men also struggle to cope after witnessing their partners give birth because seeing it has traumatised them. Most men who feel like this wouldn't speak out for fear of being judged a bad father/partner, or again, being viewed of as weak. This is just one example of how male depression isn't taken seriously or discussed but obviously there are many different reasons why men can suffer mental health issues, some of which we may not even be aware of. 

Men aren't robots, they don't have the ability to turn emotions on and off. Men are human beings the same as women are. Human beings have emotions and the capacity to show them and denying someone this freedom of expression can internalise the pain. Statistically men are far more likely to use drink, drugs or alcohol to self medicate instead of talking about it. Repressing strong feelings such as anxiety can cause anger and an externalisation of mental distress resulting in destructive behaviour and even an involvement with the law.  It is a fact that 90% of male prisoners have mental health problems and that this is far higher than the percentage of female prisoners suffering similar issues. We really need to get men to drop this 'macho mask' and in order to do this we need to move on from the ridiculous image of masculinity that we have created during the last two centuries. If we look through history our predecessors held completely different views. In Ancient Greek culture men were expected to cry if their family's honour was at stake and one of the greatest signs of true manliness was to shed tears. In fact, this idea was spread through many cultures and up until the 19th century a man who could cry was considered to be a very strong man, capable of showing his weaknesses and proving that he cared about life. Crying is a very powerful proactive way to counteract the  adverse effects of stress, depression and anxiety. Tears contain a natural painkiller called leucine enkephalin and tears that are produced by stress get rid of chemicals that raise cortisol, the stress hormone. A 2008 study at the University of South Florida found that crying can be self soothing and that the shedding of tears can elevate moods better than any antidepressant. We really need to stop just dealing out pharmaceutical remedies and start talking more. As a society we have a responsibility to look at how we enforce and promote such damaging and old fashioned beliefs. Parents should help their sons to grow up able to appropriately and securely show their emotions in times of pain, grief and sadness as well as in times of happiness. It should be taught that it's ok for boys to cry or be vulnerable. Breaking down the stereotypes is the key to dispersing this 'silent epidemic' and significantly reducing the suffering and the suicide rate in men. From time to time remember to ask the men in your life how they are feeling and next time you think about telling someone to 'man up', try to think about the negative message you are unconsciously sending out.  We need to make a change in order to save lives. Thank you.

My Quest for a Cure...Part 1

I have health issues. I know that and you now know that (if you have read my previous blog entries). One thing I don't often talk to people in day to day life about is my M.E and that is for a variety of reasons which I will share with you now. One reason is the fact that I have accepted this condition is with me constantly. Not fully accepted it but I am on my way there. Getting to this stage had been and still is very hard and deeply emotional. It us pretty much like grieving for two people; the person I used to be and the person that I wanted to be in the future. The second reason is because I don't always want to compare my journey with other people's. In some instances it does help to talk to other people who are going through the same things but personally for me I find the concept of comparing my symptoms to someone else's very scary. I have anxiety already and when I hear people telling me about their pain or their symptoms getting worse or anything else negative I panic that I will end up worse which in theory I feel could be a self fulfilling prophecy. The third reason is because I don't have a money tree growing in my back garden. I can sense your confusion now so I will elaborate on that statement. When you have an incurable health condition especially one that is very difficult to treat, people like to suggest 'cures'. Their suggestions are I am sure, coming from a well meaning place (apart from the money maker who literally knocked on my door following a newspaper article I wrote on M.E many years ago) but I have chased almost every 'cure' suggested to me over the years and I can conclude that there is no simple answer. Not only is this soul crushing to someone who would do anything to get her life back so she could fulfil her dreams but it's also money devouring, especially to someone with no job related income. In a bid to help you understand what I have been through on my mission to beat this illness I am going to try and explain some of the 'treatments' I have tried. This may be a blog entry of many parts and this is part one. I would like to state that I am writing from my own personal point of view and experience and whilst they haven't worked for me it doesn't mean that they won't for you but please be aware of full financial costs involved before pursuing any treatment and do your research. Our desperation to be healthy again means that we are vulnerable to being taken advantage of by charlatans and that it is easier for people to turn our weaknesses to their advantage.

First of all I want to talk about food intolerance tests. I have had a variety. One was done at a well know health food shop so long ago I can barely remember when but let's say 12 years ago. This involved some kind of meter thing which you touched at the same time as touching a bottle conataining various food substances and if you were intolerant the needle would move. I ended up with a massive list of foods I couldn't eat and my new diet didn't last long. It was impossible to cut them all out and when I did I didn't feel any benefit. Another test I had was the more well known York Food tests. This was around about 8years ago (ish). Basically, I supplied a small home blood sample (2 or 3 drops) and paid a low fee to get a yes or no answer to the question 'do I have food intolerances'. If the test came back as a yes you then had a choice to pay more (rather a lot more) to test your blood against a variety of foods, or food and drinks. I chose the option containing the wider variety of food and drink which of course was the most expensive. The test came back showing various intolerances. From what I can remember there was yeast, dairy, and a lower reaction to garlic, liquorice and cola. You were advised to cut these out of your diet for a period of time and that in the future you may be able to reintroduce them slowly. It's a long while ago so my recollection is a bit sketchy. They test for IgG reactions in your blood.  However you have to remember this test checks for intolerances NOT allergies. True allergies to food affect only 2% of the population and can be life threatening whereas Intolerances affect many many more people and although they can cause upsetting symptoms, they are never life threatening.  I was a bit miffed that you had to answer a question about what symptoms you were experiencing because I felt that it would have been better to not have to reveal any medical problems until after your result. I remember being suspicious that knowing your symptoms could provide them with information they didn't need to know and that they could just suggest food intolerances commonly linked to whatever symptoms you were experiencing. A nutritionalist at my local hospital was shocked at how many foods I had cut from my diet because he said my body could be lacking in vitamins and minerals (I did indeed become calcium deficient when I cut dairy out). York tests do provide information on how to replace vitamins and minerals etc but I obviously hadn't done enough. The nutritionalist didn't believe that any test could reveal intolerances and informed me that the only real way to know was to live on a bland/basic elimination diet before reintroducing foods one at a time. I avoided the foods that York tests had showed an intolerance to for a long time. I ordered special bread online that didn't contain yeast and had to have eight loaves delivered at once to ensure the postage was worth it. I struggled when I went abroad and had to sneak my special bread and rice milk into Spain. It was such a pain having to look through every ingredient in the foods I was consuming and shopping would take ages, I didn't feel a massive benefit and I lost quite a lot of weight over the year (which I didn't need to because I was already skinny). I really don't feel that it was helpful to me and I felt that being so restricted was impacting my life in a negative way. To this day I still use rice milk on my cereal and it's only in the past year or so that I have begun eating cheese again. I feel that food tests and label reading has given me a bit of a problem with food. I eat a LOT and always have, I have a strong appetite but it has taken a massive edge off of the enjoyment I get from food. I worry that everything I eat is making me ill. I worry before I eat and long after because I just don't know what makes me so bad. There is so many stories in the media about certain foods being really good for you and certain foods being bad for you and when you have had years of 'label reading' it makes you analyse everything. I feel this causes you to develop a non weight related eating disorder because your relationship with food changes and worrying about every thing you eat is a really unhealthy in to do. I guess with some people it really helps to have food intolerance tests and to follow certain restricted diets especially with people who suffer from coeliac disease and can't eat gluten. However coeliac disease is an auto immune system disease and not an intolerance or allergy so it is different.

The next thing I want to tell you about is something called The Lightning Process. Esther Rantzen's daughter Emily tried the treatment for her M.E and at the time she claimed that it had cured her (it didn't and she has since spoken out a bit more about it) and it apparently cured a few people in my local M.E support group. I was curious but the first thing that put me off was the cost of this treatment. I seem to recall it was a couple of grand ish and for someone who didn't work that seemed totally out of my reach. I wondered why someone who wanted to help people get better would charge such an extortionate amount of money for what appeared to be a very simple thing. Secondly, it went against everything I believed about my illness. From the limited info you could get about it without actually paying to do it I learnt that it was 'a training programme' and able to treat a long list of conditions. Now, many years later the website seems to have a lot more information on the treatment but it is still worded a bit confusingly 'The Lightning Process will teach you how to use Neuroplasticity to break out of any destructive unconscious patterns that are keeping you stuck, and learn to use new, life and health enhancing ones instead' www.lightningprocess.com.

Anyway, a lady in my M.E group trained in it a couple of years after I first heard of it so as soon as she started up her practice I decided to do it. I have to admit the fact that she was charging half of what you would pay to go to London was what made me go for it plus I spoke to a young girl who had been 'cured' by her and had gone from bedridden to travelling around the world. I can't explain the process so I am going to quote from the website. www.actionforme.org.uk and their description reads like this.. 'The website describes LP as a training program (not a therapy) that combines concepts from Neuro Linguistic Programming (NLP), hypnotherapy and life coaching. It claims to help with a range of conditions from fear of failure to depression, addiction, procrastination and stage fright. According to the website “it’s also effective for enhancing happiness, business success, peak performance issues, relationships” and more. The main aim of the process is to “teach you how to regain the control in your life, and so give you the opportunity to break the spiral of illness, M.E., anxiety & stress, overwhelmedness, stuckness or low self esteem, or any other destructive patterns you have.”To achieve this “the key steps are: recognising the patterns which cause the destructive feelings in your life; creating an effective way of stopping these patterns; creating more useful alternative patterns of thinking and action.”it's all about dampening down your adrenaline'

From my own experience I would briefly say that it involves telling yourself to 'stop' the minute you have a negative thought or notice a symptom, to imagine yourself well and living your perfect life and to go on and live it. They also make sure you are 'ready and committed' to do the process before they will let you sign up for it as they believe that any doubts etc can hinder your progress and prevent you from being well again. I have to admit I was very dubious from the beginning and it may be that this did reduce its effectiveness on me. Or maybe it just didn't work? Who knows. Like I have stated before I honestly believe that most alternative treatments are reliant upon your belief in them and this has been proved in the medical world by the placebo effect. Anyway to cut a long story short I went for the treatment hoping for a major change in my condition but it didn't happen. I felt like I was living a lie, trying to act well when I felt the same pain and trying to tell myself I wasn't ill which really felt weird. It seemed confusing because they were saying that they believed in M.E yet you wouldn't tell someone with Diabetes to imagine themselves well and that it would happen. I feel the need to say that the lady who I saw for the treatment was a bit scatty and confused and that she had borrowed a friends house and had cats running in and out of the room. The fact that she was scared of cats and wouldn't move them didn't help! She was lovely but it felt like I was in the hands of a rookie and who knows, maybe if I had gone to London to see the original creator of the process things would have been different. Following my treatment I had a car accident and ended up totally wrecking my Mum's car because I was just so tired and shouldn't have been on the road. I tried to ignore my exhaustion and carried on driving trying to picture myself feeling healthy. It was outside the police station at my local shopping centre where I pulled out not looking to my right at the roundabout and a lorry went right into the side of me. Luckily it only left me with shock and whiplash. I want to be clear that I am not directly linking my accident to the Lightning Process but it is fair to say that it was a contributory factor because I wasn't listening to my body. 

My next blog entry will list all the medical procedures and tests that I have ever had done and also I will share some more of my experiences with alternative therapies. 

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

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