A New Year and a New Start

I finally feel able to write about 2017. It has probably been the hardest year of my life and I ended up surviving it by hibernating inside myself and shutting out the world. That was probably very unhealthy, but it was the only way that I felt I could cope. On this last day of the year, I know that I need to do something different to go forward so have made a plan. Until a few weeks ago, I was going to ignore New Year’s Eve, by going to bed early and shutting it out, but that would be continuing in the same mode that I have been so I had to figure out a different way. I am not going to make the mistakes of previous New Year’s Eves and say goodbye to the bad old year and hello to a better one, because I can’t predict what will happen and I don’t know if it will be better and if it is worse I will feel let down, so I am going to try and just change me and how I react to whatever happens. But before I explain that, I need to say what it was that made 2017 so bad.

The year started stressful because I had to change benefits from DLA to PIP. I understand that the government have to assess people for certain benefits, but trying to get someone who is ill to fill out a very big booklet discussing their illnesses and the effects that those have on their life and then going to a face-to-face assessment that can last up to 2 hours is plain cruel. If you have enough evidence from GP’s, hospital consultants, other health professionals and social services etc that should be enough, but it isn’t. The stress and decline in health that this process does to an already sick person is massive. Many like me are too ill to fill out the booklet and have to find an advocate to do that for them, often for a fee and then have go through this process again for someone to attend the face-to-face assessment with them. This whole process took from late December to the end of February and by the end of it I was exhausted and very unwell.

Literally as Tammy and I were driving home after the face-to-face assessment the GP surgery phoned wanting to see Tammy urgently the next day. Tammy had undergone a brain MRI to previous week, because she had been smelling non-existent cigarette smoke for the previous few months. So by receiving that phone call we knew there was an issue. I being a glass is half empty kind of a person was expecting the worst and Tammy was more positive. Sadly, the worst was the reality. Tammy was found to have a brain tumour. The next few months were spent having further tests and the outcome is that she has a low grade glioma (non-malignant) at the back of her frontal lobe in an area that they don’t really want to even biopsy, let alone operate on. Her type of tumour will grow into a high grade (malignant) one but no one knows when. So she is currently having regular brain MRI’s and so far it has remained stable. This has added an immeasurable amount of stress on us. Tammy already was struggling with trying to keep working full-time whilst dealing with some quite disabling auto-immune conditions and the side-effects from the medications for those. My health had been considerably worse since 2013 and Tammy was my carer, which the thought of her not being able to be that for me anymore and her getting worse herself was another stress.  On top of those physical conditions to deal with, we now had the emotional stress of facing the very real fact that Tammy could die or be left very disabled.

The fallout from the brain tumour diagnosis included Tammy losing her driving licence. This was extremely difficult for us with me being unable to drive because of my health conditions, so we were left with two cars and no drivers. I cancelled some of my hospital appointments that were too far away to afford a taxi for and all our shopping had to be done online. Tammy had to get taxis to and from work which luckily the government reimbursed some of the costs for through their Access to Work scheme. However we still spent a vast amount of money on taxis and until you don’t have access to a car, you have no idea how much you rely on one. At the time I am writing this, after much back and forth with DVLA, Tammy has been issued with a temporary driving licence that has to be renewed every year, but that is better than not having one at all and has made our life so much easier.

The rest of the year was spent trying to practically deal with our new reality, whilst also getting our heads around it emotionally. We set up a downstairs bedroom by swapping an upstairs one with the study and have been looking into ways of turning the downstairs toilet into a wet room. We renewed our contact with social services who have helped us in the past and the end of that process has given me a part-time personal assistant to help me around the home and to take me to appointments that Tammy normally does and also a budget for Tammy to pay for a monthly massage at home which she has found very helpful. Bethany my oldest daughter has recently moved to Salford and she is now a named driver on my car insurance so we also now have another driver. And Tammy had some counselling and I am on the waiting list for some.

However this all has had a huge toll on my health which wasn’t very good to start with and I reacted by going into hibernation mode and also being quite bitter and angry with everyone and everything. None of that was healthy for me, my family or my friends, so I have formulated a plan to try and get some health and sanity back!

First and foremost I am going to focus on me. I am going to be selfish. I have spent my entire adult life putting others needs before mine – that can even be shown by my chosen careers of nursing and counselling and my volunteering as a Samaritan. I don’t want to stop that side of me, but I need to rest it for a while, because I can’t help others if I am unwell, bitter and angry.

My main issues are my physical and mental health. As well as the stress of this year making them worse, I am also menopausal which is majorly contributing to it. There are three books and an online course that I am going to use together to try to help myself. I will just mention them briefly now, but will discuss them in greater detail as I use them.

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The protocol in this book is something that both Tammy and I are going to start from the 1st January. We both are in poor health and we both are on way too many medications that cause more problems than they help so we wanted a more natural approach. I have been on a strict migraine diet for a few years and it has helped a bit but not significantly. The Wahls Protocol is stricter and it has three levels and we are starting on the easiest one. We will cut out gluten, dairy, eggs, sugar, processed foods and increase our fruit and veg content to 9 cups a day. On top of this, she suggests increasing water intake, certain supplements, incorporating meditation and exercise into daily life, getting better sleep and removing toxins from the body by dry brushing and massage and from the home by using natural cleaning products, natural toiletries, earthing and getting house plants. The last thing this Protocol requires is keeping a daily journal so you can see both your progress and also where you are struggling. As we are starting this on the 1st January, we have been eating all the foods we are giving up in abundance the last couple of weeks, so we now feel very sick and ready to give them up!

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The 4 Pillar Plan is very similar to The Wahls Protocol, but it is simpler, but is a good read and I recommend it to anyone ill or not to improve their wellbeing  for both now and the future.

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The Wisdom of Menopause is a book specifically for women going through the menopause, but it is again very similar to the two books above. It is a wonderful book. She really pushes the idea of putting yourself first and the extra things it mentions unlike the other books is removing toxic and draining people from your life and getting your finances in order, both of which I have been doing.

And finally the online course I am doing. I have had ME/CFS for over 25 years and I have always battled to prove that it is a physical and not a psychological condition. In doing this, it has meant that I have ignored some research that might actually help me. There is a branch of research that is showing that ME/CFS and other related conditions such as Fibromyalgia are a result of PTSD. This PTSD has put the body into a state of chronically releasing stress hormones and those have a detrimental affect on physical health. So the ME/CFS still is a physical condition with many symptoms, but the cause is not viral but a PTSD response to that initial virus or some other trigger. A few years ago Tammy was told by a clinical psychologist that her ME/CFS and Fibromyalgia were a result of PTSD. Tammy was angry by this and cancelled the sessions. If the clinical psychologist had explained it how I just have, Tammy might have been more accepting. It’s just us sufferers have had to fight for so long for recognition of our illnesses that we have fight against anything even bordering on psychological. However this approach has struck a cord with me. In 2006 when I was diagnosed with Fibromyalgia the Rheumatologist handed me a leaflet and it explained that one of the causes of Fibromyalgia was the chronic stress caused by child sex abuse. And also my own research into Adverse Childhood Experiences and chronic adult ill health has backed this up. So I felt that this course was worth the investment and so far I have completed the first module and it has been very helpful and informative. The course is the Energy Excellence Course and is run by Amir Norris. It also comes with a money back guarantee if you don’t improve, which was the icing on the cake for me.

As well as these things I am going to continue to do my daily mindfulness by using both the Headspace and Calm apps both of which I thoroughly recommend and also my daily yoga on the Wii Fit. I am just going to take life one day at a time and overall try to be a calmer person and that will certainly please those around me!

Happy New Year!

My love/hate relationship with social media

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I am an average person which means I am a mixture of many things. I am a mixture of outgoing and private, happy and sad, flawless and flawed, loud and quiet, secure and insecure, loving and hateful, the list goes on. For these reasons I have a love/hate relationship with social media depending upon how I am feeling and which personality of mine is at the forefront at that given time. Right now I am in a hate mode, so I am trying to retreat.

And there is issue number one. It is very difficult to retreat from social media because it is in itself very addictive. I was looking at my phone battery usage to find out why it was draining so quickly and 25% of my usage was Facebook, closely followed by Twitter. I feel naked without my phone or iPad. The first thing I do when I wake up is reach for my phone and check the feeds on various social media outlets, I eat a meal with a fork in one hand and my phone in the other, I sadly take my phone to the toilet with me. This has happened slowly over time and is made harder to stop because this addiction has happened to the wife as well. As I am sitting typing this in the garden on a rare sunny day in Manchester, she is sitting next to me reading Twitter. And social media is free, but our time isn’t. Our time is valuable and an hour logged on to Facebook can seem like five minutes. Whereas we used to have conversations about anything and everything (the first couple of years of our relationship were long distance so we communicated by talking on the phone for hours each day) the wife and I now tag each other in interesting articles or for life events that we are sharing. Her addiction is my fault because I set accounts up for her on all these social media outlets so that she could keep up with me and her addiction grew from there! As someone who has an addictive personality this is not a good thing for me. I have managed to stay away from alcohol, sugar, drugs and more, but social media has become my poison. And yes it is poisoning me. It started with Facebook because my kids were getting accounts and I wanted to keep both an eye on them and to keep up with their lives, but even when they hit the age that they started blocking me because having your parents know what you are doing is not cool, I was hooked. I found friends from school days, neighbours, an ex-boyfriend even and we all started communicating again and it felt like having friends. You see being chronically sick and stuck in the house for the majority of the time is lonely and isolating and social media brings the outside world to the house and helps with that. And there is one of my contradictions that I said at the beginning, I have a social media addiction and so need to unplug, but I am also house bound with no outside friends or contact and so I need social media to give me some feeling of belonging in and interaction with the world.

And this creates a dilemma. Facebook, Twitter and Instagram which are my three main social media forms have helped me so much since I have been stuck in the house since 2013. At the beginning I still had some real life friends, but the  longer I stayed unwell and unable to get outside and socialise they dwindled away. This is where social media took over. I joined some Facebook groups for people with the same conditions as me and I felt like I had found my tribe, with a new group of people who understood exactly what I was going through and who allowed me to feel less alone. Whatever time of day or night I logged on, there would always be someone there to listen, because these groups contain people from all over the world. These groups and the people I met on them became my only contacts apart from the wife and my kids and helped me fill the time when I was home alone all day.  But even that positive also had a negative. The longer I stayed in the groups and only had other ill people as my circle, my life just became about being ill and also my emotions were guided by these groups. For example I would compare myself with others who weren’t as ill as me and it made me feel like a failure for not getting better and even worse were the obvious lies that some people told about their conditions or the drama that occurred in these groups. I eventually left them all. Not because I was getting better, but because they were causing me more stress than actually helping me. I did meet a few people on there though who have become good real life friends, so for that it was worth it.

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And this leads to another problem I have with social media. This is the fact that it is often a world that is not real and people can therefore be anything that they choose to be and often show a life that is better than what they really have, or one that is worse. Instagram is the worst for showing perfection. People post pictures of perfect homes, perfect dinners, perfect clothes, perfect make-up and more and make others feel very inadequate and depressed. I am someone who is real and just takes a picture to show life as it is and would at times get eaten up with feelings of inadequacy when comparing myself to others. But I HAVE to be true to myself. Coming from a childhood of lies and abuse that is essential for me. But facing photos of perfect lives on Instagram does make me feel very jealous and not good enough. I am human after all. And for someone who has these feelings anyway because of being chronically ill, this side of social media is very dangerous and can lead to a rapid downward spiral. And then there are the people who constantly complain about how bad their life is when you see pictures to the opposite and yet I have reached out and try to help them because I worry about them. For someone like me who cares deeply about people and who is also very dependent on other people for my own emotions it would make me both jealous of people when I didn’t need to be or concerned about others when I also didn’t need to be. Both of these things would use up my limited energy. It is very hard and draining  supporting people who are ill when you are ill yourself and then to find out that they didn’t actually need that help can be soul destroying. I am someone who naturally takes care of others instead of myself and social media has overwhelmed me with that at times. And I need to put myself first. There are those people who use social media to seek attention. I admit I have been tempted to do that for many times because who doesn’t need to feel a bit of attention at times? But these people do it constantly and they are seemingly bi-polar with their emotions. FML is a status that was popular a few years ago and would have many friends asking what was wrong. Then sometimes less than a day later they would post about how wonderful everything is and people would respond this time asking why? And they go round and round in circles. I too have been drawn into those circles and ended up going round and round like a hamster in a wheel with these people and the only person who has suffered by doing that is me.  And finally there are those who want to be famous. We live in a world where celebrity is everything. And people will do anythat going to have a bit of that. Instagram is the worse for this. The perfect pictures of perfect lives are often seeking to attract multiple followers and find a way into fame. And these people I really struggle with because they are so driven and ruthless, in a way I am not, but good luck to them. I hope that they get want.

And talking of celebrities, social media is a way of getting a close connection to real bona fide celebrities and even getting them to interact with you. Twitter is the best for this and I admit that when Fern Britton (a long time crush and yeah I know that’s weird) liked my tweet it made me happy and feel special for the rest of the day.  This ability to have access to these usually unreachable people – the blue tick ones can at first glance seem amazing.  But then that too can become an obsession, one of trying to get them to respond to you, a sort of game that more often than not ends in failure because they don’t. You are just a tiny piece in their day and yet they become a big part of yours and the rejection can be huge, especially when they are responding to others. So you have to keep telling yourself that these people have busy lives and they can’t respond to everyone.

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And then finally for me right now social media is not giving me what I need and that is causing me added stress that I don’t need. I haven’t blogged about it yet because I am not sure what to say, but the wife has recently been diagnosed with a brain tumour and the future is uncertain. Because of my chronic illness we have been pretty isolated anyway and now with her in a similar situation this has got worse. It has made us realise how alone we are. All the negatives of social media have overwhelmed me at a time when I have needed love and support. My online life is not my real life. People can send me hearts, online thoughts, encouraging messages of support and even kind poems  and memes, but in the end it is online and not real life. These things can’t come and drive the wife to pick up some glasses that she needs to collect, they can’t take her to hospital appointments, they can’t cook me a meal whilst she is in hospital, or get me some shopping, or collect a prescription from the pharmacy, etc. And as much as the online people mean well, again it is only online and it is not anything practical in my real life. I am not trying to criticise people, I have done this myself when someone has said something that is hard in their life and I have responded with “hugs” or “thoughts” and I now realise that those people needed more and I am sorry about that. Yes of course it is nice to be thought about, but those thoughts are not going to stop my life from falling apart or do anything to stop it. And I can’t either be one of those people who are fake or who lie online. I have always been brutally honest in my life and so I would rather retreat and not say  anything at all instead of being honest and feeling it was pointless doing so or lying and smiling. And apparently social media doesn’t like me trying to retreat either. I spent days removing most of my Facebook profile and posts, but more things kept popping up as I was deleting, because I have such a history on there.

So yes retreat from social media is what I need to do right now because my current mental state is unable to handle the differences between online and real life and I need to somehow hold on to to those in my real life and protect myself. And it is hard because it is an addiction for me. Twitter is the safest for me right now, because I can just be political and argue on there to my hearts content, but I don’t have to be battling with my reality versus the perfection I see on Facebook and Instagram. I try to message and phone my kids to find out what is happening in their lives instead of looking online and I also saw a real live friend recently and it was wonderful! But I don’t want to delete my Facebook because it is still my primary connection to the people in my life that matter and who live many miles away from me. And there again is the love/hate dilemma – I log on and it makes me unhappy and I log off and it makes me unhappy. So I have to somehow learn to  fight the addiction and find a balance.

‘Three Girls’ BBC drama – why is it important and why everyone needs to watch it 

‘Three Girls’ is the true story of the Rochdale child sex abuse ring that came to trial in 2012 and which resulted in nine men being successfully prosecuted for charges such as rape, trafficking and engaging in sexual activity with a child. Forty- seven girls were identified as victims of child sexual abuse during the poice investigation. The men were mostly British Pakistanis and the girls were mostly White British. In 2015 Greater Manchester Police apologised for its failure to investigate these crimes at the various times they came to light between 2008 and 2012.

The drama consisted of three hour long episodes shown over three consecutive nights. It centred on a shy girl called Holly who had just moved to Rochdale and who was led into the abuse by an older girl who the abusers paid to recruit others. This was done by giving the girls places such as takeaways owned by the abusers to go to where they felt they belonged by allowing them free food, drinks and cigarettes and after gaining their trust in this way abusing them and threatening them if they told. The drama also examined whether the older girl who had been recruiting the others was a victim as well or an abuser because of her actions and also it introduced her younger sister who had learning difficulties so was therefore also an easy target for abusers. The drama mainly showed the failure of the authorities to listen to people such as a sexual health clinic worker and a female police officer who tried to help the girls and even more their lack of belief when the girls told them what was happening to them. The drama especially highlighted the fact that authorities fail to investigate allegations of sexual assault because the victims are perceived to be unreliable witnesses. These girls were all from poor backgrounds, many had been in trouble for minor offences such as shoplifting and were seen as ‘bad girls’. However it ended with the men involved all being convicted of the offences and it also showed the girls after the abuse had ended all of whom had become pregnant during the abuse.

Rochdale was not the only place in the UK where abuse of this nature took place and it has been suggested still takes place. Similar cases were seen in Rotherham, Blackpool, Aylesbury, Banbury, Derby, Halifax, Keighley, Oxford, Peterborough, Telford and more. It is not just a Northern problem. It is not just a UK city problem. It is all of our problem. We need to look after our young girls. And we need to care for vulnerable children. I know in an ideal world that should be done through government policy, local authorities and schools, but we do not live in an ideal world and so we need to be aware of what to look out for.

So what is grooming? It is when someone builds an emotional connection with a child to gain their trust for the purposes of sexual abuse, sexual exploitation or trafficking. This can happen online, or face-to-face, by a stranger or by someone the child knows. Groomers can be male or female and they can be any age. The child is usually totally unaware of what happening to them is grooming because the groomers are so clever. So how do we recognise if a child is being groomed? A child might become very secretive especially with regards to their mobile phone and online activity. They might start hanging out with people older than themselves and go to new places to meet these people. They might suddenly have new things that they can’t afford such as clothes, make-up and mobile phones. They might start drinking alcohol or doing drugs. Of course all of this can be normal teenage behaviour, which can make it very difficult to see what actually is going on.

This is very important to me because it happened to me. In 1986 I was a 16 year old from a very dysfunctional family. My dad was a violent, aggressive man who was very emotionally abusive. My brother who was three years older than me was a schizophrenic who was self medicating with heroin and was someone who had terrorised me my entire life. And my mum was unable to be a mum to me because she was dealing with trying to keep the peace between my dad and my brother. And then there was me. I was a very sad, confused, lost teenager who felt very alone and unloved. My dad and brother would both torment and abuse me and my mum had no time to help me. I was also trying to keep my life at home secret from the rest of my life. I was surviving on little sleep because a lot of the violence and arguments at home happened throughout the night. All I wanted was to be loved by someone and to belong to someone.  So along came Ian. I am using his real name because he has now died and also because it was real, it happened and I am not ashamed about it. I was in my first year of A Levels and we were doing our work experience placements. I was fascinated with the theatre and wanted to be an actress when I was an adult. I think it was something to do with being able to pretend to be someone else because of how awful being me was. I went to the York Theatre Royal for my placement and I was working at making scenery and unlike other placements that were offered to others at the sixth form college, I got paid.  Another girl called Liz and who I didn’t know very well did the same placement as well.  On the second day, I was upset about my parents and what was happening at home and the boss Ian called me into his office to talk about it.  He was really nice to me and told me that he cared about me and I could talk to him anytime that I wanted to.  He invited me and Liz to have drinks with him and the rest of the crew after the theatre performance that night. (As well as building scenery, they all had back stage roles for the performances.)  After the drink, he stood outside and told me that I was special and he kissed me. Ian was about thirty two and I thought that he was a really kind man who cared about me. The next day at work, he took me to one of the dressing rooms and kissed me again and took my bra off. I was really scared, but he kept telling me how special I was and how he would look after me.  At the end of the week, when I finished the placement, I was going to be moving house with mum and dad, so I arranged to see Ian the following week.  When I met him at the theatre, he was having coffee with a woman.  I asked him who it was and he looked at me like I was stupid and told me that it was his girlfriend.  I shrugged as if I had known about her and forgotten.  He took me out to his car and had sex with me whilst I was in the passenger seat.  That began nine months of a relationship where I would go to the theatre and be taken to either Ian’s car, van, office and workshop and he would have sex with me, but this was always after listening to me talk about my family and all the things that were upsetting me in my life. At the beginning of the relationship, he told me that I should start taking the contraceptive pill, but if I got pregnant on the meantime, he had a bank account that he kept purely for if abortions were needed.  I believed that I was in love and more importantly I was loved in a way that I had always wanted to be. He would buy me clothes that he wanted me to wear and would take pornographic photographs of me  wearing them and show me his albums of other women he had photographed. He told me that he sold to photos to magazines. I once asked him how a wonderful man like him had never married and he told me that he was and had two kids, the oldest being my age.  Again I acted like I was ok about it.  I knew that he had at least three girlfriends and he once took me shopping to buy presents for them. I was so wrapped up in the belief that I was loved, cared about and listened to, that I didn’t see what he was doing to me. After about six months and by this stage he totally had my trust and I would have done anything for him, he told me that he wasn’t enough for me and he wanted to introduce other men to have sex with me.  He was going  buy me a house, furnish it with whatever I wanted and bring the men to me.  I started to plan it with him.  Then, he had to go to hospital for open heart surgery.  He told me that he would call me when he was back at work.  Whilst he was away, I started to think about what I had been doing and away from him I realised what had been happening and I got scared.  About six weeks later, he called and told me to meet him at the theatre.  I didn’t go and wrote him a letter telling him that I never wanted to see him again and to leave me alone.  I had a lucky escape from what I now know would have been a life of prostitution that would have been very hard to get out of.

My own story shows just how easy it is to get taken in by a groomer and how once they have your trust they can pretty much do anything because you are scared that you will lose them and also on another level you also know that they have made you vulnerable and could tell people what you are doing and get you into trouble. I never openly admitted it to myself, but on one level I knew that Ian could send the photos he took of me to my parents and that would destroy me. Ian never threatened me with doing that, but I think we both knew in an unspoken way that he could and so I was totally under his control.

I believe that ‘Three Girls’ is an important drama that everyone should watch because it is a topic that needs to be talked about and people need to be aware of what is going on within their own neighbourhoods. Yes it is a fairly graphic and hard to watch drama at times, but I also feel that it needs to be shown in schools to give vulnerable children and teenagers the ability to see what might be happening to them and for them to be giving ways of talking about these things. I feel that if such an opportunity had been given to me I might have not ended up in the situation that I did. It was pointless telling my friends, because they all knew about it and they just thought that I was cool having a much older boyfriend. The people that needed to know where the adults in my life other than my parents who could actually help me. Before watching the drama I had assumed that support for vulnerable children and young people was better now than it was in 1986, but apparently it isn’t. Not only did the girls suffer the abuse they also weren’t believed when they told the people who were there to protect them. I remember at the time before I met Ian just wishing someone would see the anguish I was feeling and that they would talk to me about it and therefore give me the channel to express my feelings and to offer me help, but they didn’t. I hope that this drama goes some way towards making the general public and also people in authority who can help children and young people take notice and help these vulnerable and lost members of our society.

Please try and watch ‘Three Girls’. It is available on BBC iPlayer for the next few weeks.

 

My chronic illnesses don’t define me

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I have been ill for so long I can’t really remember time when I was well. I mean I was well for the first twenty years of my life, but have been ill for many years longer than that. And I think the not remembering being well is a positive thing, because I have nothing to compare this new life of illness to. All my memories revolve around being ill and trying to do the things that ‘normal” people do whilst being exhausted, in pain, with blurred vision and feeling spaced out. I also remember all the doctors appointments, lying in bed when I should have been working, missing out on evenings with friends, the cancelled concerts, asking teachers to conduct a parents evening for my children by phone, the extensive planning that had to go into something in order for it not to be cancelled and that includes my wedding.

There have been many times that I have been told ‘you can’t do that” especially by my own family. Very early on in my illness in 1992 I was having an all day appointment at a local hospital to diagnose my illness and being subjected to every blood test and physical test known to man. At the end of all the testing, I was sat down by the consultant in charge of the clinic and told that I did meet the criteria for M.E as it was called then before all the name changes. He told me about lifestyle changes and treatment options I should consider, but the one thing he said that stuck with me was “don’t miss out on the things you planned and the life you want because of this illness and don’t wait to do things until you get better because that might never happen”. I have held on to those words ever since; I had the children that I wanted to have regardless of what my mother thought, I travelled to the places I wanted to see, I was unable to work but I volunteered for a few hours a week as a Samaritan, I went to university for one afternoon a week to do counselling, I wrote film reviews for a local magazine and I ran a local reading group. I tried to live the best life I could within my limitations. No it wasn’t easy; I had to hand my children over to others for part-time day care, my wheelchair travelled with me on the foreign trips, I couldn’t complete the university course because the following year it went to one full day a week which was too much for me, I never completed the books I started writing because of fatigue and headaches and I couldn’t do all the socialising with the people I had met along the way because I was usually in bed when they were out having fun and many of those people drifted away because they just didn’t understand my issues. I have lost so many friends because of this, but I have also gained a lovely group of people along the way who have become “my tribe”. They are mostly online, but they are there for me and they understand. You have to become tough when you have a chronic illness, it is the only way to stop it from consuming you and to allow you to keep moving forward, be strong enough to try new medications even though they have possible horrid side effects, fight health professionals who don’t understand your illness and want to even tell you that there is nothing physically wrong with you because you look so well so it must all be in your head, fight DWP for the benefits that you are entitled to and actually get out of bed and live and believe me that is the hardest one. But moving forward is the only way to get through life because time doesn’t stand still and even though it is not the life you originally planned or wanted it is still a life and it can be a very happy one. And that is how I stop these illnesses defining me.

Before I was ill, like most people I didn’t think about illness. I lived my life and I lived it in the fast lane not eating properly, not getting enough sleep, never really thinking about anything deeply and never stopping to smell the roses. And I certainly never thought about my death. I don’t think anyone does unless they are faced with it because of an illness or when someone their own age or close to them dies. Being ill and also thinking about my death has totally changed the way I see the world and how I live my life. So in that respects being ill has been a gift. Ok well it hasn’t been the best gift I have ever had, that would be my Toy Poodle. And it hasn’t been the worst gift either, that would be the rack for drying clothes that fits over the radiator! However it has been a gift in the respect that it has forced me to get out of the fast lane and to treasure the small experiences that most people don’t stop to even take in. Sitting here now I can see the blue sky, the green trees swaying in the wind, a bird sitting on the fence and a fly walking across the outside of the window. My dogs are snuggled up next to me on the sofa. I have a warm drink and a bowl of pretzels beside me. And today is a bad day for me so I am not able to go outside, but I am still able to find beauty and things to enjoy in it.

Being ill for me is a full-time job and hard work. There are a million things I have to do in order to even feel slightly less awful: I have to go to bed and get up at the same time every day, drink 3 litres of water a day, eat a very restricted diet, take medicines that give me side effects, take handfuls of supplements, make sure I am eating enough salt, try and exercise to stop my balance from deteriorating, try and stay calm in stressful situations (a hard one for me), wear support tights, sleep with my bed tilted, try to find the correct time to stop doing a task before i have overdone it and end up back in bed, wear dark glasses because of light sensitivity, read with a purple coloured overlay over the words to stop them swirling around and more. But i have learnt to do these things without thinking about it and they have become my norm. However none of this defines me. It is not who I am. Inside I am exactly the same person that I ever was with the same beliefs and morals and in many ways I am a better person because this has given me more understanding of and compassion for others.

Do I wish I wasn’t ill? Some days and especially the really down days of course I do. Being this unwell can be overwhelming most of the time, especially when there is a doctors appointment looming and I have no idea how I am going to manage to go to it, or there is someone coming to visit and I don’t know how I will be able to socialise for more than a few minutes. And I often feel jealous when I see on social media the exciting things that others are doing. In those situations I try to remind myself that each and everyone of those people have problems that they are dealing with. I worry about the effects of my illnesses on my relationships with my wife, children and friends. This is especially true because of the huge amount I have to depend on Tammy for just about everything and I am fully aware that she isn’t well either. But wishing I am not ill when I am is a waste of my limited energy. I am ill and that is not going away and trying to fight against it takes even more energy. Instead I live with it as a part of me, but not all of me. I am not going to allow it to have power over me. I have taken what life has thrown at me and used it to my advantage by helping others in a similar situation and by focussing on the things I can do and not the things I can’t: I am a good listener, I am a good friend, I am a very good cook, I am a really good organiser and I am an expert at my illness to the extent I can advise others who might be struggling at the start of their journey with the same conditions.

No I didn’t choose to be ill. If I had a choice I would have either been a musical theatre actress or a midwife, but these are the cards that life has dealt me. What I can choose is how I deal with it. I accepted years ago that this isn’t going away. There will be no miraculous cure that will make me get back on the path I was on and the one that I had planned. I am now on a different path and that is all it is, not a worse one or a better one, just a different one. Accepting that has been much better than fighting it. I spent so many years and spent so much money looking for the cure and in the end I was still ill and had less money to send on the things that I enjoy. Yes there have been a lot of failures, but who doesn’t have failures when trying to achieve things? There have been many disappointments, having to leave my children to live with their dad when we divorced and giving up driving are the main ones that spring to mind. However it is not the failures and disappointments that define you, it is how you deal with them and that is how you learn and grow as a person. Being ill just makes you more aware of that process than other people. In the end the only way to live without life overwhelming you is to make the best of the situation that you find yourself in. My chronic illnesses don’t define me, they are just a part of me.

 

Child Sexual Abuse

I was sexually abused as both a child and a young adult. I don’t remember all of it, but I remember enough. I remember rubbing on any creams that I could find in the bathroom because I was “sore down below”. I remember having a heavy vaginal discharge when I was about 8 years old and my mum taking me to the GP to discuss it and asking if it was me having an early puberty and he said no but didn’t offer any other explanation for it. My uncle inapproriately sent me sexy lacy underwear for a Christmas present when I was a teenager and my dad made me model it for him. My dad used to make me watch porn with him when my mum had gone to bed.  On my wedding day my dad made me wear my bridal underwear in the garden whilst he took photos of me and the scary thing is that I thought it was a normal thing for him to do. When I was 32 years old and I had recently given birth to my youngest child, I was looking through photos my dad had taken and none of them were of the baby but were of my breasts whilst I was breastfeeding. However it wasn’t just my dad. My brother locked me in the bathroom when I was 12 years old and assaulted me for the afternoon. I also remember being sexually assaulted as a young teenager in the toilets at church by a man in his early 20’s. And I got into a relationship with an older man when I was 17 years old probably because I was escaping my family and he abused my trust and got me involved in the porn industry and it was only by luck that I managed not to end up a prostitute because he had it planned for me and I had agreed to it, but he then went into hospital and I escaped his clutches. There is a lot more, but that isn’t entirely what this post is about.

I first started talking about and healing from my abuse 13 years ago and until the last year I thought that it was behind me. Of course it never totally goes away. It is a part of who I am and it affects decisions I make and my reactions to situations I encounter, but the constant videos of things that had happened to me going around my head had stopped and my painful childhood had disappeared into the background of my life and no longer filled my thoughts 24 hours a day. However, slowly over the last year my abusive past has been starting to fill my thoughts again to a level now that I have asked for help because I do not want to be consumed by it again. So why has it all come back?

Firstly, a year ago I found out that my brother had died. By the time he died he had been dead too long for them to be able to ascertain a cause of death, but it was highly likely it was from a heroin overdose. From being in his mid teens my bother had been a drug addict and at the time of his death was serving a suspended sentence for dealing heroin. I had always hated and been scared of my brother in equal measures, he had delighted in tormenting me my entire childhood and had even made death threats to me as an adult, but his death instead of bringing relief to me has given questions. Was he abused as well? I remember once when he was being arrested as a teenager after one of his violent outbursts saying that he had been abused by my uncle (the same one who bought me the underwear). My parents had always spun the story that my brother was the cause of all the family problems, but what if he’d had a childhood as bad as mine and his life had gone down a dark path because of that? What was my brother’s story? I will never know the answer to that question. Also a couple of days before I found out that my brother had died, I received a letter from my dad who I had not heard from in 13 years. The letter spelled out his funeral and burial plans including a hand drawn map of all the various places these events would occur and asking me if I wanted informing when he died? This made me more acutely aware than I had been that my dad is very old and he could die as well. And I have absolutely no idea how I will feel and react when that happens. So as well as dealing with my brothers death and the unanswered questions that has raised, I am also terrified of getting the phone call to find out that my dad has died.

Secondly, my health has been awful and I had the revelation that the reason for that, is my childhood. I have always thought that the stress I endured as a child must have affected my health as an adult, but I never had any proof of that. Recently reading the book “Childhood Disrupted” gave me the proof that lots of research has now shown that adverse childhood experiences lead to bad health in adult life. On top of this, my mum also recently admitted that what I went through as a child has caused my illnesses as an adult. But I don’t want to just stop there and blame my health on my childhood. I want to try and repair the damage because i don’t want to spend the rest of my life a victim and part of that involves facing these issues by writing this blog and by getting peace about what happened to me once and for all by counselling, mindfulness and yoga.

Finally, historical child sexual abuse has been in the media since the Jimmy Savile story broke. At first the public were sympathetic to the victims, but as time has gone on and more and more celebrities, MP’s and others in the public eye have been accused the public, fuelled by the popular media have started to disbelieve the accusations and have been calling it a witch hunt against these accused. This feeling of the public has increased because the recent arrests have not led to prosecutions. So surely this must mean innocent people have been accused? This is not necessarily so. Take for example the hugely famous pop star that had the investigation into allegations of historical sexual abuse against him dropped this week. I logged on to social media after he had given a television interview about his ordeal whilst he was under suspicion of these crimes to find a close friend of mine saying how sorry they are for him and that his accusers are “evil.” This riled me. I had been following this case for years, even before his arrest and I knew that there had been many victims’ stories of abuse by him in the past. So I challenged this friend and she got angry with me saying that he had been found innocent so that was case closed and he was a victim and the accusers were “evil”. No this is not true. He was not found innocent. The CPS looked at all the evidence sent to them provided by the police and they decided that there was not enough of it to get a conviction. Nine different men had gone to the police with stories of what this man had done to them. The police believed them. They collected a file of evidence from four of these “victims” and decided that there was a case to answer and passed it to the CPS. However the CPS will only take on cases where they feel that they can get a conviction and they didn’t think that they could in this case. However none of these accusers have been charged with wasting police time, making false accusations or perverting the course of justice, which suggests that their stories of abuse are still believed by the police. So no, this pop star has not been found innocent, because only a court case can do that and if I was him I would be unhappy that it hadn’t gone to court because then he could have proved his innocence. But the press has made him into the victim and that is one of the main reasons why survivors of these crimes do not report them. Both I am my wife could still now go to the police and report what happened to us. But there is no evidence, or not enough evidence. It would be our word against theirs. And we could end up going through a lot of pain and stress to end up being seen as “evil” liars and our perpetrators being seen as the victims. People who report historical child sexual abuse are not “evil” they are very brave. Yes there will be people who lie, but this is rare. I think the media has turned against survivors and in many respects is bored of all these stories of abuse being reported. There currently is a Child Sexual Abuse Inquiry going through government and yet we are hearing nothing about it. I personally believe that the Jimmy Savile case was the tip of the iceberg and historical child sexual abuse was widespread and included pop stars, politicians, police, religious ministers (my childhood Methodist minister went to jail for sexually abusing boys) and even the royal family. And in response to the often written idea that it was a different time back then and so things like that happened. Well yes it was a different time back then, children and women were not seen as equal and had limited rights and so were open to abuse. However that does to make it right and people even back then knew that what was happening was wrong and they need to face justice for the things that they did. I like many many others are still suffering because of what happened to us. It affects your whole life. There is also a belief that the accused should not be named. However naming them encourages other victims to come forward and I would hate for that to stop, because unless you are a victim you have no idea how alone, scared, dirty and afraid to speak out you feel and it is easier if you find out it is not just you and talking about what happened to you is the first step in healing from it. And also naming the accused means that their names are in the public domain and it is more likely that they will not abuse others because they are no longer hidden. As I have said both my wife and I could report what happened to us but we are afraid to do so. Not doing so though also means that others who might have been hurt by our abusers never get the chance to come forward and also our abusers might have gone on to abuse others because of our silence and we have to live with that.

There are many myths about child sexual abuse for example normal, well educated, middle-class people don’t abuse children. In fact, anyone from any walk of life can abuse children. Another is that people too readily believe that the accused are guilty. In fact, people do the opposite and can’t believe it is true even if there is evidence. This is because people like to believe that the world is a kinder place than it actually is and that no one would harm children. Another one is that it can’t be true because children would show physical evidence. This is not necessarily true. It happened to both my wife and I and we don’t. And also how is there physical evidence after being fondled, or being made to be a part of pornographic photos etc and these are as much abuse a full-blown sex is. Another one is that children would tell their parents or an adult that it is happening to them. No they wouldn’t. – they are terrified of getting into trouble, they feel ashamed and in many cases their abusers have threatened them as to what will happened to them if they tell anyone about it. And finally another myth is that children lie or exaggerate about what has happened to them. In fact, this is rare and children even usually minimise the abuse and this minimising often goes on into adulthood. It did and has for me.

Right now I am angry and angry isn’t good for me, my health and my relationships. So I have had to log out of social media, because right now I can’t ignore things that hurt me, I lash out at them. I need to protect myself and I need to be kind to myself. So I am writing this as it helps me to have a voice and to take away the pain that the past gives me. Writing is therapy, mindfulness is therapy and yoga is therapy.

Thoughts after the Orlando shootings

I feel less safe today. I have felt this way since Sunday morning. I also feel different again like I used to feel. The murder of 49 people in a gay bar was the start of it but the blatant homophobia I have read since on social media and in the mainstream media has made it worse and then the treatment of Owen Jones on Sky news was the final straw. Yes unless you are gay you cannot possibly understand this.
When Tammy and I got together 13 years ago we certainly felt scared to be who we were in public. Well she did. I was stupid and naive because of my openness about everything in life and when we met for the first time I jumped onto the train she was arriving on and kissed her in front of everyone. I soon learned though that we had to be on our guard. One of my children had a parent of their friend tell the friend that they could no longer play with my child because of my sexuality, one of the first times we walked down the road holding hands two men pulled up in a car and offered us to tag team and we have had some problems where we live as well. We have both lost people because all we did was change the sex of the person we loved – Tammy has lost most of her family and some of them will be those who think the gays deserved what happened on Sunday morning, her brother called her the worst names you could possibly imagine, my oldest friend told me that she loved me but hated who I was, a Christian friend who was very special to me told me that I was going to hell now and many of those who were accepting just thought it was a phase we were going through and found it quite amusing even though we had gone and got married in Canada in 2004. Our marriage was not treated equally or taken seriously. In fact people who we had invited who were easily able to attend it didn’t and it ended up being just the two of us and the wedding planner there.

So we sought out our tribe. We surrounded ourselves with lesbians and we frequented lesbian events and bars. We then felt “normal”. Then political events such as Civil Partnerships, hotels not being able to discriminate again gay couples, next of kin rights, adoption rights, immigration rights, equal marriage both here and in the USA happened and again we felt like we fitted into the wider world again and were safe.

Then this weekend happened. On Friday Tammy and I had a night away and as we were sitting in a swimming pool our discussion turned to the popular one of where we are going to live when she retires. She misses her daughters and grandsons in the USA and she hates the weather here. My kids are here and we also have free healthcare here. Although Tammy wants to buy an island and us live in the middle of nowhere and hide away from the rest of the world, we agreed to buy a narrowboat and spend summers here and buy a house in Orlando and spend winters over there. And then just over a day later a hate crime against gays, the worst mass killing of gays since the holocaust happened in Orlando. Yes it could have been us in that bar. And a man was stopped from doing something similar at a pride in LA. We have been to gay bars both here and in the USA and we have also been to pride both here and in the USA.

And I feel less safe.

A life-changing book


Before my illness I would read at least one book a month. Lately I haven’t been able to read at all because of floaters in my vision and words moving around on the page when trying to read. However this was one book I was determined to get through and I have just finished it after a few months. I guess talking about it should have been a first post in my blog because it is the reason I started the blog in many ways and its contents are central to what I am trying to achieve, but I wanted to wait until I had finished it. So here it is now and let the honest discussion begin.

My childhood was hell. At the time whilst i was living through it I didn’t realise how hell it was because it was normal for me, all that i knew, but now looking back it was the most toxic childhood imaginable. My dad was emotionally, physically and sexually abusive towards me, my mum was emotionally unavailable and unable to be a mum to me and my older brother was the same as my dad towards me. And we had no extended family or friends to provide an escape. We hid all the toxicity within the four walls of the house that was called home and I got in big trouble if I ever tried to tell anyone outside that house what was going on in there even though i did risk doing that at times in order to keep my sanity. Some of this abuse continued until I was 33 years old when I finally decided to tell my parents that I didn’t want to have them in my life anymore and the reasons why. Thirteen years later I do now have a limited relationship with my mum by phone once a month or so but only when my dad is out and it is very superficial. My brother died 18 months ago from a possible heroin overdose but that will never be fully known because he had been dead too long for a post mortem to be carried out. A couple of weeks ago during one of the phone conversations with my mum she for the first time acknowledged the things that happened to me as a child and that she had not been there for me during those years. That has completely thrown me. It has made it all seem more real to me like I can’t pretend it didn’t happen anymore and I have started to think about it all again. Which is painful and hard.

This is where the book comes in. There is a large amount of current research showing that bad experiences in childhood affect future adult health considerably and surprisingly physical health as well as mental health. Researchers have listed 10 Adverse Childhood Experiences (ACE) that can happen to a child before the age of 18 that affect future health and how many of these 10 a person has experienced is scored and called an ACE Score. In the same way 14 positive things that have happened in a child’s life are scored and called a Resilience Score. I scored 7/10 on the Ace Score and 3/10 on the Resilience Score which shows that my childhood will have had a massive affect on my adult health. This has been life-changing for me to discover because I became ill at 21 when everything in my life was going well for the first time ever and I have had so many chronic health conditions for no apparent reason.

This could all be depressing because I can’t go back and change my childhood and undo all the damage that way. However it is not all doom and gloom, because the book brings a lot of hope with it. The chronic stress that happened as a child on the developing brain and immune system can be changed even as an adult. In the past I have had a lot of counselling to help me deal with my childhood and it did help a lot and allowed me to develop healthy relationships and live a happy life, but my health has been awful and the last three years it has been the worst it has ever been. Reading this book has filled in the gaps for what I have been trying to do over the years with healing from my past. Firstly, I need to write because writing is therapeutic and can release things that are often held inside with an honesty that talking about things often doesn’t do. So for this reason I am keeping this blog. But as an extra I also hope that it will help someone else along the way. The book suggests drawing feelings as well, but I am much happier with writing. Next I need to practice mindfulness daily. Mindfulness can really change the way the brain functions and actually resets the inflammation response. Brain scans have proven this. I am not very good at being disciplined enough to do mindfulness every day and so have signed up for a 10 week online teacher led cause which will force me to do a 10 minute meditation twice and day and I am hoping that this will kickstart my daily mindfulness practice. I also want to explore moving meditation such as Mindful Movement, Tai Chi and Feldenkrais. The way we move and hold our bodies has an big effect on our health and I especially hold a lot of tension in my neck and shoulders which i hope to improve. I am also going to need some more professional help from a counsellor to get me further on in my healing, especially in the areas of learning to love myself and building my self esteem and learning to forgive those who have hurt me so I no longer hold onto anger and bitterness (a big one because this just doesn’t seem right to me but apparently it is needed). So I have self referred to a local counselling service. All of these things are going to give me mindsight. Mindsight is the ability to totally see and know my mind through insight, empathy and integration which will give me the big picture of my life. Finally I need to work with my physical body that has held tension from a fight, flight and even a freeze state of mind for years. My body is crippled with tension and pain. I need to start exercising again. At the moment I am too unwell for much exercise, but i can do yoga and pilates. I am going to do yoga on my Wii Fit and try and find a yoga and/or pilates teacher to work with.

And whilst I am going through all of this I need to know that I am not alone. I need to find my tribe. And statistics show that I am not alone, 64% of people around me faced some sort of childhood adversity and being with them right now will help me to deal with mine. For a start Tammy my wife had an equally awful childhood and is also facing some chronic health problems so I am understood at home, which is a big support so long as I don’t put up a wall and keep her out or push her away. Also my mindfulness group will have peer support through a forum and I am also a member of a forum for survivors of child sexual and abuse and have been for many years. I will utilise all of these things. And again I am hoping that as I write and share this blog, it will be the start of many honest conversations for both me and others, which is a big part of healing for all of us.

Better living through mindfulness

Modern life is a chronically scary business. We are surrounded by stress, so much stress that we are never able to switch off from it and this can be mentally and physically harmful to someone like me who is anxious and who struggles to deal with stress. As I have previously stated, I can snap at anything. The following picture which I have taken from Ruby Wax’s book “Sane New World:Taming the Mind” sums up some of the things we have going on in our heads stressing us all the time:


So how to deal with this? For me mindfulness has been a very helpful tool in learning to be in the moment and to try and not let the stress destroy me. Yes I know that it seems like mindfulness is the trendy cure all of the moment, but I did my first course in in back in October 2008 before the rest of the world had heard of it and it really did help me. It just seems that everyone else has finally caught up! Back then I had been attending the local NHS hospital for my M.E and a place on a 8 week course run by a group from the Manchester Buddhist Centre called Breathworks was offered to me. The wife paid to do the course alongside me, partly as my carer and partly because she herself was suffering from a lot of pain with her Fibromyalgia. It was a mindfulness course that was specifically aimed at people who were suffering with pain and illness. In return for my free place on the course I agreed to give feedback at the end of the eight week programme.

At this stage of my illness I was back to 70% health but struggling to accept that this was chronic and would be for the rest of my life without a cure. I was grieving for the me that I had wanted to be and was trying to accept changing the plans and goals I had made for myself. In 2006 I had gone to university to train to be a counsellor and had to end the course after a year because I wasn’t well enough to continue. This had been my life plan after giving up the previous one of being a full-time mum and having had to leave my ex-husband as the main parent of my four children after my divorce because I was just too ill for that role. By 2008 I was had no idea who I was and was pretty much in turmoil. Added to that, the previous two years had seen the deaths of two of the closest people in my life and I had struggled with the second one massively. So even though my physical health was the best it had been in 16 years, mentally I was a mixture of depression, anxiety and OCD. I thought I was doing the mindfulness course for my physical health but in reality it came at exactly the right time for my mental health.

Mindfulness is a practice where we become aware of ourself in the present moment. As I went through the course I learnt to be aware of my breath, feelings, movement, eating and more in that moment. For someone whose mind is always thinking and worrying about multiple things at once just to stop and focus on the present was life changing. The process of this was done through various meditations, exercises and movements to eventually encorporating mindfulness into every aspect of my life. I know this doesn’t sound clear right now but through this blog I will go through mindfulness in the stages as I learnt it on this course and it will become clearer.

However, mindfulness is a skill that can be learnt but also needs to be practised regularly and as I felt more at peace with myself and as life got in the way I stopped practising it. And then I forgot about it. And my thoughts and my worries and anxieties started to get in the way again, so in April 2010 when I was again offered a place on a mindfulness course this time run by my local NHS hospital I jumped at the chance. This course was in many ways more difficult than the original one because it was more aimed at people suffering from stress and depression than pain and illness so we were expected to sit for the meditations rather than lie down and I found that hard to do. I also didn’t like the woman running it. She believed that M.E was an illness with psychological rather than physical causes hence why her course was not based around pain and illness even though most of the people on it were M.E sufferers. At that stage I was adamant that my illness had been caused by the Glandular Fever I had in 1991 and her attitude angered me. I have since changed my belief somewhat and think that emotional and physical stress in childhood can cause ill health in later life, but still a physical illness caused by the stress affecting the developing immune system. I will explain this too in a later blog post. However despite my problems with it, the new course did again show me that mindfulness could help me and it also restarted my regular mindfulness practice.

Then in July 2013 everything went to hell. I became more ill than I had ever been in my life and 3 years later I am still suffering with a life running at about 30% health. The downturn in health started with episodes of spinning vertigo followed by months of very odd foggy vision, seeing walls and floors as slanted and moving, being unbalanced and more fatigue than I had ever known. It was accompanied by crippling headaches and even opening my eyes was at times too much. I was given a diagnosis of Vestibular Neuritis, then Vestibular Migraines was added to that, then PoTS and finally after testing it was found that the virus that caused the Vestibular Neuritis had permanently damaged the balance in my left ear and my already ill brain was unable to compensate for that damage. This illness triggered anxiety worse than I have ever had as well. The last 3 years have seen me become pretty much housebound, dependent on others for everything and physically and mentally in a bad place. Any mindfulness practice went out of the window in July 2013. Until recently…

A few months ago I came across the app Headspace and did the free ten day part of it. Around the same time I read a book called “Sane New World:Taming the Mind” written by the comedian Ruby Wax. However it was not a book about comedy but about her many years experience with depression and how she found help for that with mindfulness. She wanted to make sure that mindfulness was a real treatment that worked and so she studied the science behind it by doing a Masters at Oxford University. She also saw MRIs of brains before and after a course of Mindfulness which showed positive changes. This made me even more certain that I needed mindfulness in my life regularly again. I then saw that Ruby Wax was speaking this month locally about her new book “Frazzled” which includes a 6 week mindfulness course in it. For the first time in 3 years I went out at night and heard her speak. It renewed my desire to make mindfulness a part of my life and I am hoping that by keeping this blog I will continue to practice it daily.

I have many chronic illnesses that give me fatigue, pain and many other problems. These will never be cured. They can be managed but even that is not certain. What is certain is that I will be ill for the rest of my life. That can’t be changed, but what can be changed is how I respond to it. The past probably hugely contributed to my current health and the future is going to be totally different to the one that I had envisaged. However the only reality is the present, where I am now and I need to be able to find peace in those realities. I will end this post with a picture which sums up what I am aiming for. This poster hangs in my meditation room:

Jealousy and Negativity

I am a miserable cow a lot of the time. This illness is relentless, 24/7. It is the first thing I think about on waking and the last thing I think about when going to sleep. I am jealous of people who wake up with energy and feeling good. I do not remember that feeling. It was so long ago.

Since 1991 health for me has been a luxury, something I have had to work very hard for. And for the last three years I have not even been able to do that because I have been so ill. I feel jealous of healthy people for so many reasons. Healthy people get up out of bed each day and don’t have to think about the things they do,they just do them. They don’t have to plan and replan everything in their lives and then still have to cancel at the last minute. They don’t lose people in their lives because of this constant cancelling and the frequent turning down of invitations. The don’t have to spend vast amounts of time and money on the research and purchase of treatments that hopefully might make them feel slightly less awful. Healthy people don’t have to spend eternities answering questions about why they do what they do and this includes to health care professionals as well as to family and friends.

Healthy people irritate me too. They compare their acute illness or self-inflicted injury to my chronic health struggle and then within a week or so they are back to feeling normal and back to being an unthinking healthy person. They love to tell me what I am doing wrong or worse how I should “just get on with it” or the worst of all they believe I am just depressed. They never accept that this is for my whole life and I just have to figure out the best way of managing it. Part of this as well is probably that they can’t face the truth of my illness because deep down they fear getting a dirty chronic illness and my honesty and reality would make them have to face that.

I’m tired of explaining. My multiple chronic illnesses come with many restrictions on my life. First and foremost for most of the past three years my house has been my prison. I just about only leave it for a medical appointment. I am on a strict diet that makes eating out even when I can leave the house almost impossible. My fatigue is such that I stand at the top of the stairs wondering how I am going to get down them. Any kind of perfume and most smells make me dizzy and give me a headache. A neighbour just collected a parcel that had been delivered here when they were out and hugged me and now I am covered in their perfume and have a huge headache and feel like I am going to throw up. I sleep through the night but have night terrors and wake up feeling as if I haven’t slept. My bed is propped up on bricks to try and stop me feeling so faint all of the time and I have to drink a litre of water before I even get out of bed for the same reason. My eyes don’t work right, everything is blurred and all light is painful. I stand up and feel like I am going to faint. I get tons of UTIs. I try medications that are offered to me and often my health is made worse by the side-effects that I get from them because my illness has made me sensitive to medications. And that’s only the start.

I’m jealous of healthy people because they don’t have to explain every single life choice in detail — from diet to sleep habits. And no I didn’t do any of this to myself. It just happened. I try my hardest to be as healthy as I can be, but I will never be a healthy person and that is a hard reality. I miss doing things spontaneously. I miss wild sex. I miss holidays. I miss driving. I miss being a big part of my children’s lives. Overall I miss being a part of any life and I hate being forgotten about or being too scary a thing to be remembered. I’m jealous of healthy people who stay out all night drinking, get four hours of sleep and then juice to make themselves “healthy.” I’ll never be the person who can take big risks with my health ever again.

The worst kind of healthy people are the ones don’t even try to listen so will never even begin to understand what it is like to live with chronic health problems and disability. These are the ones who consistently say “you look so good!” They have not listened, they don’t want to know and I usually cut them out of my life because they kill me emotionally.

Society assumes everyone is born in good health, that it is in abundance, and if you’re not healthy it’s your fault. This is made worse by the media and the current government attacking anyone who dares to apply for disability benefits. I’m sorry but being chronically sick is not cheap and we need the help. I have a cleaner. I am trying to get a carer because my wife works and I need help to get to appointments. I try treatments that are offered. I have a wheelchair. I have to get taxis. All of this costs money. 

If your friend shares their health issues, don’t demand or guilt them into doing more than they feel comfortable with. Just listen.

If you have good health, don’t take it for granted.

Diet is a dirty word

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I will admit it – I am called Sally and I am a foodaholic. I love food. I crave food. I think about food pretty much all of the time. Apart from my wife and kids (and I am only saying that incase they read this!) there is nothing I love more than food. You get the picture? Food is my life!

For the first 21 years of my life, I pretty much ate anything I wanted to eat without thinking about it. If I wanted a pack of chocolate HobNobs for dinner I would have them. I ate a family size bag of cheese and onion crisps most evenings. I was one of those lucky people that never put on weight and I was a human dustbin. Then I got ill. And as soon as that happened especially after one of my first diagnoses Irritable Bowel Syndrome, a huge can of worms was opened. People started to tell me what I should and shouldn’t be eating to help my symptoms and it has been going on ever since. If you are someone like myself who borders on having health anxiety this can turn food into an obsession and becomes unhealthy. For example if someone tells you not to eat gluten you stop eating gluten to the extent that if you see a crumb of a gluten containing food on a chopping board you panic. Yes I have been that person. This is also fuelled by the media, especially the Daily Mail who regularly print scare stores about food – red meat will kill you, carbohydrates will kill you, fat will kill you, coffee will save you and the latest one, being a vegetarian will give you cancer. Argh!

At the beginning of my illness and when I was in the newly diagnosed stage of buying self help books that all gave conflicting advice and being surrounded by “helpful” people who also gave me conflicting advice, I decided to spend my savings and consult a Nutritional Therapist. Now there are some great Nutritional Therapists, in fact I later trained to be one myself, but this one was very expensive and assured me I would get well only if I followed her advice 100% and bought and took all the supplements she suggested. So I did and stuck with her advice for 8 years! She was convinced that my illness was caused by a candida overgrowth and so began my first diet  – the Anti-Candida Diet. For this I had to cut out sugar in all its forms, so no sucrose sugar, fruit, dairy, white pasta and flour etc and no alcohol. And I followed this for all those years religiously. On top of that were supplements that cost about £50 a month which was a lot of money in 1992. Luckily back then some of them weren’t blacklisted so could be prescribed and my GP did do that for me. The idea was to build the immune system with the supplements, starve the candida with the diet, kill the candida with other supplements and then take supplements to replenish the bowel with healthy bacteria. The diet was very limiting, but it did help a bit and I stuck with it all those years. But it didn’t cure me. If you think candida might be causing some of your symptoms the diet and changes are laid out very well in this book:

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During that time someone else suggested that drinking Aloe Vera Juice would cure me so I spent two months drinking a few tablespoonfuls of that each day. That did nothing. It was also suggested that I try an Elimination Diet. This involved eating nothin but lamb, brown rice and pears (the foods less likely to cause problems) for 10 days and then adding in foods one at a time. I stuck to this for about 3 weeks when I started to get bored of it. I hadn’t noticed any different whilst doing it anyway. These diets did though give me an interest in nutrition. So in 1996 when I was pregnant with my second child I trained to be a Nutritional Therapist. I learnt a lot about food and how it can both damage and heal and how “death begins in the bowel.” It was especially useful because I was raising a young family and felt it was important to nutritionally give the children the best start that I could.

By 2000 I was still unwell, but I was about 50% better and that was enough to make me relax the diet. In fact that began years of me eating my favourite diet – The Eat What The Hell You Want Diet! Yes I was back to my pre-illness levels of eating, but I did draw the line at sweets with colourings and foods with nasty E numbered preservatives. That was my favourite diet! It was great and to be honest my health remained consistent. The only issue with that diet was once I hit 40 years of age the weight started to pile on.

Then in 2013 when my health deteriorated, I started to look at diet again. In fact the last two years have been taken over by dietary changes. Here are some of the diets I have tried during this time:

The Migraine Diet – this is basically cutting out any foods that might trigger a migraine. You are supposed to do this for three months and then slowly add the foods back one at a time and see if they cause a problem. This diet also cuts out caffeine. The issue for me  with this diet has been feeling so awful all of the time it has been impossible to decide if a certain food is the problem or not. I think this diet works better for people who have episodic migraine or people with chronic migraine like me but who have it under control unlike me. I do though still stick to this diet for the majority of the time. The migraine diet is very well laid out in the following book:

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The Gluten Free Diet – this is as it says in the name, no gluten. So no wheat, barley, rye and only eating oats that are gluten free. I did this for the whole of 2014. It is not a hard diet to do anymore because shops stock lots of gluten free foods albeit expensive ones and ones that are very processed and full of preservatives and other nasties. I stuck religiously to this diet even missing out on cupcakes at my wedding vow renewal reception and it didn’t help me. So by Christmas 2014 I ate some gluten and have done so since. In many ways I have more energy when I do eat gluten.

The Paleo diet – this is eating the way that stone age man did and is a very on trend diet at the moment. It most involves meat, fish, vegetables and fruit with no grains, dairy or processed foods. I have dabbled with this diet on and off for the last couple of years and do like it as a way of eating, but it is very expensive to follow and I do miss grains when eating it so for me it is not a permanent diet. I do though incorporate parts of it into my current diet.

The sugar free diet – this is the latest trend in health circles, the media and even the government is starting a sugar tax in soft drinks in the future. This diet cuts out all sucrose sugar, white flour, white rice and all other refined carbohydrates. Back when I did my nutrition training I read the following book:

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This book made so much sense to me back then and still does today. Sugar is a killer and it is responsible for the huge surge in type 2 diabetes and many other health conditions such as heart disease that was previously blamed on saturated fats. When I was a child sugar was a treat to be eaten in a pudding at the weekend or when buying a few sweets with pocket money. It is now mainstream and in everything. I do adhere to this diet about 95% of the time allowing myself a sugary pudding after Sunday dinner. I advise everyone to check their sugar intake and cut down.

So what do I eat now? I am caffeine free because I believe that a month of caffeine binging was one cause of my migraines and health deterioration in 2013. I stick to what in my opinion is a healthy diet. I eat mostly white meat and fish with oily fish twice a week and eat red meat once a week. I eat wholegrain carbohydrates, vegetables but with plenty of green ones and limited potatoes and I eat fruit but mostly green apples and berries and not the fruits very high in sugar. I only cook with butter, olive oil or coconut oil and avoid refined oils such as sunflower oil. I drizzle hemp seed oil or extra virgin oils on salads. I use butter and not margarine. I do eat limited amounts of dairy. I don’t eat sugar except as a Sunday treat. I have breakfast, lunch and dinner and have a mid morning snack usually of seeds, a mid afternoon snack usually a vegetable juice and a piece of toast and butter at bedtime to keep my blood sugar level throughout the night. I am about 60% paleo and stick to the migraine diet when at home. I also drink at least 3 litres of water a day. And if away from home or if it is a special occasion I do not stick to this because that is when food becomes an obsession and that is not healthy. And also it is easier to stick to something if you allow yourself treats once in a while. I do not call this a diet, I call it a way of life because diet is a dirty word!