On holiday in Canada towards the end of my recovery
HOW IT ALL BEGAN
As I look back now, I can see that the first signs of something not being entirely right with my health showed itself when I was 18. During my ‘A’-levels my glands swelled up and I felt exhausted. I was diagnosed with glandular fever-something pretty common amongst stressed out students. I think that I really believed that my grades were a reflection of my worth as a person and whilst I recovered from the glandular fever (although I don’t think I completely regained my full energy), this theme continued.
I took a year out and went to University but I seemed to be a person that needed lots of naps. I didn’t consider that perhaps this was unusual for someone so young. I just thought that perhaps I was a bit more of a naturally tired person than others around me. So, I continued to study hard until I crashed again. This time I was at home for the Christmas holidays in my final year of University. I got excruciating cystitis which lead to a kidney infection. The kidney infection really terrified me because I couldn’t move out of bed due to the pain and it took quite a few days for the antibiotics to start to work. After that, I couldn’t regain my energy. My kidney ached and I could barely get out of bed-the tiredness was overwhelming. At 22 I had to tell my University I was too ill to come back. My house mates packed up my stuff and shipped it to my family home. I felt so exhausted that even found making a meal a huge ordeal let alone contemplating taking my finals. The doctor told me it was post-viral fatigue (I hadn’t heard of ME/CFS back then) and that in time, my energy would recover.
I was exhausted and completely perplexed. I couldn’t understand why this had happened to me. However, over the six months that it took me to recover from that period I started to grasp some themes. I was brought up on Louise Hay’s book Heal Thyself so I was aware of the mind/body connection and I began to see how involved I’d been with my parent’s divorce, how responsible I’d felt (the eldest child of 4 with 3 younger brothers) and how I’d worked too hard at University. Brandon Bay’s book The Journey had just been published in the UK and I read it avidly. I then went on a weekend seminar of hers which really helped me gain some clarity. Fortunately my energy returned (although I didn’t know I’d re-visit this place some years later). I did some travelling and returned to University (most of my friends having graduated the year before) to successfully finish my degree. This was followed by a 3 year period of instability and terrible jobs! I really wanted to train to be a psychotherapist but I didn’t have the money so I ended up in office job after office job. Most of my employers seemed to really like me but I always hated the job-they were often surprised when I eventually quit! I think that I was good at people pleasing-doing what was required but inside I was feeling frustrated. Certain jobs really stand out, like one I had working for a network marketing company. We sold individuals books to run their own businesses. However, the company started to go into bankruptcy so I had to lie about when they’d receive their books and I had way too much work to do (I used to stay awake thinking about it at night). I was totally unfulfilled, broke, stressed and had a relationship with someone who couldn’t get their life together (so more responsibility and debt).
The final straw for my health (and sanity) was the last job that I had. I was 26 and working for the council. I liked the fact that I felt like I was finally doing something worth while. It was my responsibility to install panic alarms for elderly and disabled people. I did 12 hour shifts, took emergency calls in a control centre, drove all over town and would regularly be on-call from home after 2 or 3 twelve hour shifts in a row. This meant that I could be phoned at any time (most often when I was asleep) then I’d have to get dressed (if it was the night), jump in the car and drive alone to a house or flat where someone had pressed their alarm to see what had happened. Most often an elderly person had fallen over and couldn’t get up but you never knew quite what you might find in terms of accident or injury. It was my responsibility to administer first aid, call the ambulance and wait. This is the kind of front line job that most people would find stressful but with my history, my sense of over responsibility and the effects of long shifts and interrupted sleep, I physically started to really suffer.
At first I noticed that I was exhausted on my days off, I could barely get out of bed. I then started taking small naps during my work day by parking the car at the side of the road. My boss would have whole heartedly disapproved but it was the only way to get through the day. Then the physical symptoms started: thrush that wouldn’t go away, throat infections, strange pins and needles, feeling nausea, flu, awful PMS, difficulty in concentrating and feeling like I was going to faint. I was off sick so often that I had to have a ‘disciplinary meeting’ with my boss and Human Resources. I was reprimanded for the amount of days off that I’d had and given targets to improve this. I walked out of the meeting, climbed into my car and burst into tears. I wasn’t doing this on purpose.
Exhaustion in 2004
I figured I needed to do more exercise. Funnily enough that didn’t do the trick and I was finally struck down once again with another bout of cystitis. This was really scary for me because I’d had the kidney infection a few years ago and couldn’t bare the thought of going through that again. So, I took a large dose of antibiotics and hoped for the best. I remember my then boyfriend going out with his friends for a lovely day at the beach in the summer sun whilst I lay in bed in agony, tired and totally confused.
It took 3 weeks for the worst of the cystitis to pass but after it had, I just couldn’t get out of bed. I felt tired to my very soul and kept having to send in sick note after sick note to my job. My boyfriend at the time, would come home from work and find me sobbing on the bottom step of our stairs. I couldn’t understand why my energy wasn’t coming back, why it felt hard just to go over the road to the shops and why I could barely think straight. It felt like my life fell apart. I couldn’t see any option but to resign from my job. It felt like a relief when I finally did, they wouldn’t call me anymore and ask when I was coming back. I knew that going back to work would probably kill me or so it certainly felt. But I was 26 and could barely leave the house. I couldn’t earn money, I couldn’t socialise and no one was able to tell me what was wrong. The blood tests came back normal. And the exhaustion, strange physical symptoms, bouts of viruses and the on-going feeling of needing to pee all the time even though the cystitis had passed (this can literally drive a person insane!) kept me on my knees.
THE JOURNEY BEGINS In time, it became a real journey of discovery for me but to begin with, I was just confused and scared. I knew about the mind-body connection but I mainly used this to beat myself up. I reasoned that if there was a mind body connection, this must all be my fault and I must have really messed up my life. Of course, I now know that it wasn’t my fault in the way that I thought about it then. I just didn’t know how to do all the things to keep me happy and healthy in my life prior to being ill. I’d neglected myself on all levels by doing what I thought others and society needed from me. I’d never really thought about what I wanted! But how do you know to consider yourself when that’s not ever been suggested to you? The past wasn’t my fault in that way. But in the meantime, I made myself feel worse when what I actually needed was care, love and attention.
Over the next year and a half (and with the restriction of a very tight budget) I went through a period of trying all sorts of things: herbal medicine, homeopathy, I saw a naturopath, I read lots on the internet and I bought lots of random supplements. I thought that maybe I had Candida or post viral fatigue but I didn’t really know what the latter meant. No one mentioned ME/CFS or seemed to be able to make a real difference to my symptoms. I felt lost and that no one was able to help me. Finally, after an awful bout of flu (that left me feeling worse) I was passed some information about a private doctor that worked with ME/CFS. I read the list of symptoms and it completely resonated with me. ‘Maybe this is what I have‘, I thought. I had heard of it before then, but only in passing and I didn’t really know exactly what it was.
The private doctor did a live blood test, told me how my cells where working ineffectively, whilst also measuring a high level of viral load in my blood. From all this and some other tests he did, he gave me a diagnosis of ME/CFS. This was both a blessing and a curse. Finally, I had some provable evidence that something was really physically wrong, someone telling me that I had a ‘thing’, I had ME/CFS. But the down side was the feeling of weight that I had ‘this thing’. When I read about it on the internet I learnt that people rarely got better and that I could have this for life. It takes time to take in news like that. I think I cried a lot.
My private doctor fortunately believed that it was possible to recover and suggested a course of expensive treatment. I think some of the supplements he gave me helped a little but the worst (and most expensive) part of the treatment involved travelling 3 hours to the clinic 8 times to have a needle in my arm for an hour and a half with high dose vitamin C pumping through my veins. I was told that this had an 85% chance of making me recover. I hated it, often they couldn’t find a vein but I hoped that it would work. What actually happened is that I started to feel worse. I now realise that my body went into massive detox and couldn’t cope with the amount of toxins being released into my blood stream. I felt even more exhausted and towards the end of the treatment I spent two days on the toilet with diarrhoea and vomiting.
TRYING TO UNDERSTAND Alongside the physical treatment that I’d been trying I started to investigate my mind, emotions and spiritual connection. I started to see a psychotherapist and began to really look at my past. I began to digest emotions that I’d buried, to understand my family history, to journal, see my patterns and get to know myself better. I gradually began to understand how I’d burnt myself out. I realised that I hadn’t dealt with a lot of things that had happened to me. I started to read books about psychology, emotional intelligence and spirituality. I began meditating and going to yoga classes. For the things that I really liked or that I found helped me a bit (such as yoga) I used to sleep or rest so that I could drag myself there. I was always glad that I had. I found all of these things fascinating and seeing the illness as something to learn from really helped. I learnt that I had depleted my body by not listening to it. I had ignored my emotions and that I was doing very little to put anything back in. It was all giving out with little fun, support or things that fed my soul-I was like a car with no petrol, running around on empty and expecting the engine to still work.
But even with all this, I felt so much hopelessness, frustration and isolation. No one really seemed to understand exactly what it was like to live with this illness. That it was like prison, small things felt like climbing a mountain with the amount of physical exertion and concentration that was involved. And I tried to look to others like I was normal (to be honest they often thought I was), I wanted to show that I was strong and coping. So some of the people around me didn’t even realise how ill I was.
After I finally resigned to the awful fact that despite all the effort and expense, the private doctor’s treatment wasn’t getting me any better, someone passed me the information about the Optimum Health Clinic. I read Alex’s book and went to see Anna who is the Director of Psychology. I had come so far by myself. I understood so much more about who I was and why I got ill but what she gave me (and what I now understand in a great deal of depth myself) was the understanding of the very particular way of being, thinking and surviving that this illness creates. It was such a gift to be truly understood for the first time, to have someone know exactly what it’s like and to say ‘Don’t worry, this is what everyone with this illness experiences, you’re not alone.’ I began to see just how much anxiety, feelings of lack of safety and low self esteem I’d lived with prior to getting ill. Then how much the daily difficulty of being ill and lack of explanation about it had kept me in a state of stress and not helped my body to recover. I quickly started to use the tools I was given, as well as ultimately undertaking the clinic’s practitioner course and assisting on the ’90 day programme’ (working with others also in recovery).I also gained some incredibly helpful knowledge (and test results to back that up) about what was physically occurring in my body from Niki Gratrix (then co-director of the clinic).
THE SPIRITUAL BIT
Another important part of the puzzle fell into place for me around that time. I had a spiritual reading from a friend. He was able to ‘tune in’ to me and shed more light on why I’d got ill. I knew that I’d felt over responsible for others, spent too much time and energy giving but there were aspects to this that I hadn’t until that point acknowledged. I understood from the reading and let myself admit to myself just how sensitive I was in terms of feeling other people’s emotions and feelings. I often couldn’t tell the difference between what was mine and what belonged to someone else, I felt it so strongly. The reading suggested that I had literally been ingesting others feelings into my own body and hadn’t known how to digest and let go of these. All out of a deep desire to be of service and heal others. As far fetched as it may sound, this completely resonated with me. I started to read about boundaries, practise techniques of keeping myself separate from others as well as letting go of what I’d taken on. This wasn’t easy at first. Sometimes I was literally holding on to my body as I was talking to someone trying to stay connected to it and how I felt that day instead of feeling like I was completely merged with the other person. Over time, I learnt how to do this and assisting others to do this too is now a big part of my work. I also learnt that this ability is a gift, that I now often utilise in my work without damaging or draining myself. It’s also been a gift in terms of getting strong intuitive senses about what to do. In fact, I know that it is this strong intuitive sense that lead me to many of the helpful things that I did on my path to recovery. I discovered that I was my own best guide.
I think that the journey of recovery from this illness forces you to really commit to yourself to look and acknowledge things that you wouldn’t otherwise have done. So, not only did I become really aware of boundaries but I also changed some of my relationships as a response. I really had to learn how to say that tricky word ‘No’! I realised that no matter how hard I worked on my boundaries some people were not good for me; overly demanding or gave too little back. So, I took my courage in my hands and started seeing less of certain people (I was literally feeling more ill around them I’d realised) and started being more honest with myself and them. Courage too in so many different ways is required I also believe to recover. The courage to prioritise your needs, to be honest, to change your life if necessary, sometimes to just be different, be ‘you’ and simply often to just get by day by day. That strength that cannot be seen by everyone or appreciated from the outside. ME/CFS is not culturally recognised like climbing a mountain or gaining a degree, but it sure is just as hard (and far more relentless)!
Another huge part of my recovery was creativity. I read and joined a group that followed the book The Artist’s Way by Julia Cameron. I started doing things just for the fun. I realised that the achiever part of me always liked to see the point or purpose of everything that I did. Simple joy wasn’t a good enough reason! I tried art classes, made things, expressed my difficult emotions through art, took myself to free museums and let myself try things that I ordinarily wouldn’t. I now realise how important that was, it gave me a sense of fulfilment, relaxation and enjoyment. That sense of nurturing yourself, giving yourself something good instead of constantly emptying the emotional, energetic petrol tank! I now understand just what a level of emotional deprivation most people with ME/CFS are experiencing (probably even before the illness but certainly during it). With no energy, money and a desperation to recover, it’s easy to ignore those things that re-connect you to yourself, help you to understand who you are, what you need and give you a little joy, a little light in such a dark place. For all these reasons and more I now use many of the techniques involving creativity (whether that’s music, art, gentle movement, nature and so on) in my work. The impact they had on me and they can have on someone’s health can be really surprising and wonderful.
I gradually started to get better. I experienced fewer bouts of viruses, had a little more energy and got more confident. But this happened so gradually, sometimes I went back into feeling frustration and doubt because I didn’t think it was happening at all. Another important part during this time was that I worked with an amazing therapist/healer who helped me get in touch with the anger about my past and all that I’d experienced. I think anger is much misunderstood in our culture. It’s actually such a powerful way to tell yourself what you feel about something and to feel more empowered as a consequence. It the expression of anger (acts of violence or shouting) that we fear and have often experienced in our childhoods. So, we repress it not even allowing ourselves to feel it but what you do with it is your choice and directed in the right way and given space it can change a life for the better. After one such session I was able to go swimming in the sea for the first time in years, it felt wonderful (and cold!) and I didn’t feel any negative effects later.
I had to have patience…masses of patience but I think it takes time for the physical body to catch up and heal. So, at times, I felt like I had changed SO much but ‘why wasn’t I better yet?‘ I now think that it was also important for me (and is the case for many people) that I got better gradually. There are so many things that the illness incidentally protects you from; relationships that are no good, going back to work you hate, having to be the achiever or helper again. It was as if my body just wasn’t up for being better until it was sure that I really wouldn’t go back to those things. But neither did I have to get it all perfectly right-just right enough for me! Included in this was looking at my beliefs about being well and that I could do it. I discovered I even had the belief that if I was better I would invalidate the experience of the illness and the lack of recognition of ME/CFS in our society. I finally figured that I could be of much more help to all those with ME/CFS by being well myself (without going into draining helping mode of course)! There were times when I noticed I took another leap forward, where I expanded my comfort zone and my energy responded. Near the end of my recovery I inherited some money and took a 3 week trip to the Canadian Rocky mountains.That was an adventure and a challenge! It was a huge achievement to be able to travel and sleep in a camper van too. And despite the fact that I will admit that there were points that I was so tired I could have cried, it was one of the best things I’ve ever done. I slept a lot when I got back but then my energy took another turn for the better.
In the end, it’s hard to pinpoint the exact date that I felt completely better. It’s often hard to answer the question about how long I was ill for but sometime around the age of 31 (I’m now 33 as I write this in 2010) I realised that I wasn’t making strategies about my energy any more. I was just living my life and doing things without thinking about it. I sometimes felt tired but it was such a different type of tiredness-it wasn’t that all consuming, brain numbing, aching, drag yourself around tiredness-I just felt tired like a well person that’s been busy (you forget that healthy people feel tired!). Honestly, writing this is bringing tears to my eyes. To be able to really live again and not just exist, to thrive-to be free again and appreciate all those things that I couldn’t do for so many years, when you stop to think about it, is extraordinary. What a gift. And life has never been the same since. People say that this illness is a blessing in disguise and I know how hard that is to see when you’re in the middle of it, when you’ve been brought to your knees, when every day is a constant grind. But it’s forever changed me, in so many wonderful ways. I will never ignore myself, my needs, who I am and what kind of life suits me again. This is an on-going challenge but I glad that I’m now constantly creating, adjusting things and enjoying the life that I really want. This has it’s ups and downs, there’s always more to learn, there’s the turning what you want in to practical reality and there’s the simple fact that you’ve lost your physical fitness and have to regain it! But, I appreciate so much, experience so much joy, so much that’s new and wouldn’t change a thing that I’ve been through. As well as my work with other sufferers, I’ve gone on to study and perform improvised comedy with our group ‘A Fish called Improv’ (much to my own surprise). I’ve moved to a sea front flat with my comedian/musician boyfriend (update: as of September 2013, he’s now my husband) and I cycle every day.
‘A Fish Called Improv’
From the bottom of my heart, for all those who are suffering from ME/CFS (or related illnesses) reading this I would say that I honour your strength, commitment and endurance-there is nothing like this illness. I want to hold out a light and say, don’t lose heart, it is possible to recover and not only recover-but make your life the life you really want. There is always, always, always HOPE.