In the midst of my darkness and despair, one person took my hand and led me to a switch, and the long dark tunnel filled with light. In an instant, the darkness was gone! It suddenly became clear that the darkness was not the problem. The real problem was the absence of a second element. That element was light. Instead of becoming fascinated by the darkness, together we concentrated on bringing in the light and eventually I managed to run out of that long dark tunnel!
This is not a story intended to get pity, to direct blame or gloat about recovery. I tell it with the intent to simply share an experience, to educate and most importantly, to bring hope.
I am a trainee occupational psychologist, young, determined and driven and was proud of helping others with serious health problems return to the wonderful world of work. One of the attributes I prided myself on was being a very good listener.
However, ironically, not so long ago, I found myself sitting at the other side of the table, the side I never wanted to be on, unable to work and completely lost and hopeless about how to help myself. Why? Because I stopped ‘listening’ to my own body’s intelligence. Perhaps my ‘listening’ skills weren’t as good as I thought after all. Intrigued? You should be. In today’s stressful and hectic world, I’m guessing quite a few people could benefit from brushing up on their ‘listening’ skills! A year ago I went through a string of stressful ‘life events’, one after the other, in a short space of time. I was living in London, working towards my chartership and had just started a new job as an Employment Specialist in an NHS severe mental health unit. Instead of taking time to deal with the crippling emotions I felt, I tried my very best to ignore the huge knot of grief that sat itself firmly in my stomach day and night and I went into ‘overdrive’, I never sat still, every spare minute was spent trying to keep busy. I thought distraction was the key.
My hobby of running became a common pass time and I literally tried to run away from how I was feeling. After all, isn’t that what we are expected to do when life takes an unexpected turn for the worst, get your head down, get over it and get on with things? My health slowly started to deteriorate and I became a shadow of my former self after months of sleepless nights and a decreased appetite…and perhaps too much running! Because I had not long started a new job I tried my very best to wear a ‘mask’ during the day but the truth was I was a lost soul. I started to experience frequent night time panic attacks and became a walking shell going through the motions of life in the rat race, finding little enjoyment, yet funnily enough, still very focused on helping others. Looking back, it was a bit like I decided to vacate my body, paid no attention to it for months and months and during that time, disease saw an opportunity to swoop in and take over…perhaps I had left it no choice! So, things came to a head in October 2009 when I spent a month in bed with what started off as an inner ear virus. I had never felt so ill before in my life. When I felt a bit better I tried to go back to work but something wasn’t quite right, I didn’t have the energy to walk very far, had pains in my lead legs, felt dizzy and sick, had awful sinus pain, felt breathless, was losing more weight and generally still felt very unwell. I couldn’t work full days and some days I had to get taxis to and from work as I just didn’t have enough energy to get the train. I was convinced the doctors must of missed something and felt very distressed about all my symptoms. I went from doctor to doctor only to get told I had post viral fatigue, my blood tests were clear and not to worry, it would pass, it was nothing serious…
And so I pushed and I pushed and I pushed….I’ve always been one to push myself to the limit and I thought ‘if I can just make it to my desk then I will put on my mask and try and pretend I’m ok’! I began to measure everything in distances as my energy was so low. The distance from my flat to the over ground station, the distance from the station to my work, the distance from my desk to the meeting rooms downstairs where I met clients, the distance from my flat to the local food shop once I got home after work…….every day was a struggle to get through. Three days before I was due to go home for Christmas I couldn’t make it into work at all. Energy wouldn’t allow it. Little did I know this was just the beginning of a very long journey. However, the Christmas break at home in Scotland allowed to me to regain strength and I went back to London feeling a bit better. I thought that was it, now all I needed to do was make a few changes to my life to make me feel a bit happier. Shortly after, I was successful in finding a new job which I thought was perhaps a step in the right direction as my previous role had been isolating but this month of new found energy was short lived. Just before starting my new job in March 2010 I came down with yet another bad ear/sinus infection which floored me again. I once again started to rely on taxis to get me from A to B as I had no energy to walk. When healthy, London had been exciting and I had thoroughly enjoyed the fast pace of life. When ill, it became an overwhelming, very lonely and stressful place to be. It’s not that I was short of friends….but they didn’t have the time to look after a sick person and none of them really understood what was wrong with me. Neither did I. I will never forget the day I called for a taxi and asked for the driver just to drive me around London until my friend came home from work. I felt so physically ill and scared, I couldn’t be alone. The kind taxi driver could see how ill I felt and so didn’t even attempt to drive anywhere and sat and spoke to me for over 2 hours until my friend left work. He didn’t even charge me for his time. Such a kind selfless gesture is hard to come by in the big smoke. Perhaps he was sent by my guardian angel! The next day I got on a train to go home (as instructed by the doctor in A and E who’d I had seen a handful of times that week!). I couldn’t take any more time ill and alone.
However, at this stage I was still naive and thought surely another few weeks of rest would sort me out…after all, it was just yet another ear virus that was making me feel so ill and weak! The train journey home was not a pleasant one and again I had to turn to complete strangers for help. I paid extra for yet another taxi driver to help me onto the train as I didn’t have the energy to carry my bags. I felt my body was that of a 90 year old, not the 27 year old who a year ago could work full time and still have energy to hit the gym 4 times a week! I arranged for a family friend to pick me up half way as I couldn’t manage the whole train journey and when I arrived in Edinburgh it was a real struggle to walk from the train to the car which was parked 5 minutes.
Although the original infection eventually cleared up after what seemed like endless courses of antibiotics I spent the next 6 months pretty much housebound with no energy to do normal everyday things. My home turned into my prison and I felt like I’d became a burden on my family and friends. I hated every second of every day as I felt so unwell. I was eventually diagnosed with atypical facial pain and CFS/ME. Much to my dismay, I lost my new job and had to give up my flat in London. Loosing my job felt like the final straw as it forced me to admit Id lost my health. I hit rock bottom with a thud and felt scared and completely hopeless as I so desperately wanted to get back to work and just be able to do normal things but I felt so physically drained and unwell and there were no real signs of improvement and no one to offer any real explanation or help! To begin with having a shower often wiped me out and took a few hours to recover from, climbing the stairs felt like I was climbing Ben Nevis as my body felt like lead and even after 12 hours of sleep I woke up feeling like I’d run a marathon. I even remember on one occasion crying to my mum as I didn’t have enough energy to pick up a pan to boil an egg for my lunch! For those who have experienced CFS/ME this will all sound familiar. For others, I hope it is obvious; I am not talking about a healthy tiredness which can simply be replenished by a good night’s sleep but complete and utter exhaustion, both physical and mental. It’s hard to imagine being so tired you can’t even muster up the energy to pick up a pan isn’t it? The fatigue is indescribable really. Its not a case of ‘oh im just being lazy tired – ill be fine tomorrow after a good sleep’… its more like ‘im so tired I might not make it upstairs, I’m so tired I can’t walk the next few steps, Im so tried even just sitting watching TV drains me, im so so tired and feel so ill I just want to die’. CFS is like walking though treacle, like trying to swim through sand, like staying up for days and days in a row and just as your falling asleep your alarm goes off and you have to get up really quickly and run to work with a ten ton weight on your back, its like climbing a never ending ladder…it’s like a really bad f**king joke. And to make it worse some people don’t believe you, and question whether your really ill at all….you see there is no proof! As I know is the case with most people who are diagnosed with this condition a lot of people, including a few in the medical profession, appeared to think it was ‘all in my head’ which infuriated me. Yes I was at my whit’s end, yes I was tearful and scared and at the start I was never away from the doctors as I felt so unwell…but wouldn’t you be if suddenly walking 5 minutes down the road had turned into a lost battle? Wouldn’t you be if you felt really, really, really unwell, but still had to do all the ground work, going from doctor to doctor and getting nowhere? I remember, on one occasion, paying a ridiculous amount of money to see an ear nose and throat specialist on Harley Street only to be told after a mere 5 minutes of his time that I was perfectly fine and just a bit stressed! Yet I felt physically terrible, my ears and sinuses hurt like hell and climbing the stairs to reach his office felt like I was climbing a mountain. I left scared and in tears. I remember thinking in the taxi on the way home – what if I am actually losing my mind? Maybe this is what it feels like? Two hours later I got an appointment with my GP as I still felt really unwell and was then told I had a severe ear infection and was given yet more strong antibiotics. Confused? Don’t worry, I was too.
Unfortunately this was the pattern that continued for months.
There is nothing more frightening than knowing the doctor in front of you doesn’t really know what’s wrong or doesn’t believe your really ill or both. But because I wasn’t ‘fixed’ with the pills that were shoved at me my health problems were deemed ‘largely psychological’ by some. However, although my experience of going from doctor to doctor led me to question my own sanity at times, I knew my own body and I knew that barely having the energy to even wash my hair in the shower some days was very real and very physical. I assure you, if I could have simply thought myself out of it, I would have! No amount of positive thinking could change the fact my chemical body was stuck in some overdriven state of which I had no idea how to control.
After realising conventional medicine had absolutely nothing to offer me apart from one kind listening ear (from one very understanding local GP for which I was and still am very grateful for) and medication which had pages of side effects, I used the little energy I did have to research on the internet possible alternatives. I refused to just sit there and accept the illness which had been deemed incurable by some. After a home visit from a very kind nutritional therapist I was given a large dose of hope and started taking an army of supplements which helped give some relief from some symptoms and helped my body recover from the negative effects of far too many antibiotics. I also learnt to bury a stress related relationship with food. I started to have some better days which allowed me to at least try and go on short 5/10 minute walks and I took up painting as a pass time. I even started an interactive DVD programme by a well known Harley Street ME expert and attempted to retrain my amygdala! However, I still felt like my body was stuck in some sort of vicious adrenaline cycle. I felt if I overdid it (and by this I mean walking more that 10 minutes!) or got over worried and upset (god forbid!) I would pay for it and have to spend days recovering.
So, what next? I had tried the conventional medical approach of shooting down the unwanted symptoms. I had paid to see 2 private ear specialists, a private dentist, had a rather costly sinus scan, reluctantly started taking a course of anti depressants and had also taken truck loads of antibiotics, antihistamines, steroid sprays and prescription nerve painkillers which just made me feel even more unwell. I even tried to follow the advice given about pacing and graded exercise. One doctor just kept saying “walk for an hour a day, eat lots of vegetables, and walk for an hour a day”. Sorry doc, but I’ve tried and it isn’t working. My mum would drive me to a quiet road and I would try walking while she waited nearby in the car. After 5 or 10 minutes of walking I felt like crawling back to the car. So, I then tried to find relief from the symptoms through alternative approaches. Some like nutritional therapy and Aus Flower Essences, I continued with as they helped give some relief and were bound to have a positive effect on my overall health but others didn’t have any effect at all. Over the course of the year I had tried acupuncture, counselling, Chinese medicine, NLP techniques, meditation, yoga, CBT, rekki…I even tried to teach myself Emotional Freedom Techniques…tap, tap, tapping out trapped emotions doesn’t work by the way…it just makes you look a bit silly! My sister then came home one day and said she had heard of Dr Mickel who lived nearby. I googled ‘Mickel Therapy’ and found lots of newspaper success stories. I was intrigued but still a bit sceptical. I had already spent most of my savings (over £9,000!) on trying to get my health back and I felt nothing had got to the root of the problem. Nothing had ‘cured’ me or really explained why exactly my body had decided to go completely haywire in the first place! Should I try yet another therapy?
Would I be disappointed? I pondered for a while. However, after taking a week to recover from an Ear Nose and Throat hospital check up appointment in Aberdeen which had involved no more than 15 minutes of walking, I reached the point of sheer desperation for what was to be the last time. Once again I found myself in bed, hopeless, disappointed and lost. This wasn’t life. This wasn’t me. When would this end? Where would this end? I had read horror stories of people having this condition for years and years. Was that really going to be me?
I thought, if nothing else, seeing someone face to face on a regular basis who was an expert in the field and who recognised CFS/ME as a real physical condition and not ‘all in my head’ would give me hope, something that I was once again running out of which scared me. I wrote an email to Dr Mickel titled ‘Help’, parted with the last of my life savings and embarked on Mickel therapy. During my first session Dr Mickel explained that all the infections/viruses I had picked up were an effect, not the cause. CFS is due to an overactive hypothalamus gland which creates a spiral of symptoms though the HPA axis and the immune system can eventually crash. The body is continually being over worked which is explains why I felt like I had ran a marathon even after 12 hours of sleep. In chemical terms I probably had. So, I hear you ask, if it’s an overactive hypothalamus gland that causes CFS and that’s in your brain, it’s ‘all in the head’ after all? No not in that sense. It has nothing to do with the conscious thought process and the mind chatter is viewed as just noise. These are only secondary emotions which are created by the ‘head’ about illness. So instead of doing any ‘head work’ Dr Mickel explained he was going to show me how to ‘listen’ to my ‘body intelligence’. The ‘body’ is an independent intelligence within us (more important and different from our ‘head’). Its job is to guide us through life. I learnt primary emotions are in fact created at a physiological level. Dr Mickel refers to them as e-motions – energy in motion. They are energy of situations transduced by the body into energy of e-motion that reflect the body’s evaluation of these situations and not the ‘head’. The hypothalamus gland goes into overdrive as a warning signal that you aren’t ‘listening’ and have stopped responding appropriately to your primary e-motions. Symptoms are therefore viewed as messages which should be ‘listened’ to, interpreted and responded too. So perhaps my atypical face pain, my anxiety, my dizziness, my ear pain, my overwhelming fatigue, my lead legs, my breathlessness, my swollen glands (to name a few!) weren’t symptoms to be shot down by drugs, perhaps it was my body’s way of trying to tell me to stop and ‘listen’ and take action instead of run away from the truth. ‘Listen’ and respond appropriately enough times and your body intelligence can see that your indeed tuned in and ‘listening’ again and no longer needs to send you symptoms! Dr Mickel wrote on a piece of paper the ‘message’ my body had been so desperately trying to tell me. I looked at the message and cried. Everything made sense. I had to face up to the fact some past experiences had affected me more than I had ever cared to admit and had caused me to stop ‘listening’ properly to my body intelligence from a very young age. I had in fact learnt to ignore my body’s intelligence and had been doing it for years….which had led to a few wrong choices! So when hit with an extreme amount of stress in a short space of time which caused my emotional turmoil, BOOM!, my emotional pot overflowed. I stopped ‘listening’ and stopped responding all together, went into overdrive and my CFS/ME nightmare began. For the very first time, my illness made perfect sense and I realised CFS/ME was actually my body’s way of protecting me, warning me! I thought to myself – no wonder I’ve developed CFS/ME, perhaps my illness wasn’t such a mystery after all.
I now realise that the anxiety attacks I started to have were the first symptoms my body intelligence sent to me to tell me to wake up, listen and respond. When I didn’t respond, when I continued to ignore my primary emotions and try and continue on a path that was making me miserable because my head and stubborn nature told me to, the symptoms came harder and faster. I was then forced to stop, listen and make some long overdue changes to the way I was living. So, you see, I’ll say it again, although uncomfortable, my symptoms had a purpose after all. They stopped me on my track and made me ‘listen’.
I wasn’t on the right path and my body and its wisdom took over and pulled me out through illness. Something had to stop me. If it wasn’t ME perhaps it would have been something far worse.
So does Mickel therapy work? The proof is in the pudding isn’t it? Two days after my first session with Dr Mickel I went for a walk to the park (a 10 minute walk). I had done this route once before and it had been a real struggle and I had to sit on benches to rest along the way but this time it felt different, something had changed, my legs felt stronger and I had no worries about making it all the way round. I had finally started ‘listening’ and I was rewarded with ENERGY! That awful underlying feeling of illness had lifted. I will never ever forget the excitement, hope and relief I felt that day as I walked round the park. It honestly felt nothing short of a miracle but it was actually my body’s way of saying ‘YIPEEE SHE IS STARTING TO LISTEN!’ Dr Mickel hadn’t miraculously healed me (although, I can’t deny, I thought he might of and text my sister saying ‘guess what im walking round the park and I feel fine – that doctor must be some sort of miracle healer’!!), he had began to teach me how to heal myself. I did the route 3 times that day and cried with joy as I knew, deep down, it was the beginning of the end, my gut told me so!
I looked forward to every Mickel session and absorbed Dr Mickel’s nuggets of wisdom like a sponge and acted on them as best I could and as a result I continued to improve and here I am fully recovered. Don’t get me wrong, the process was no walk in the park; the journey back to full health was not an easy one. It was very hard work putting the Mickel tools into practise and facing up to the causes of the illness and I had many ups and downs along the way as my confidence and life had been shattered into a million pieces and I felt the frustration of my situation was at times unbearable (being housebound for months on end doesn’t do wonders for ones confidence!). For a long time I felt I was living in some sort of ‘inbetween world’…not ill enough to be in bed but still not well enough to live a normal life. It was a lonely, isolating world.
One filled with frustration and anger – emotions which I had previously viewed as taboo! Some days I felt like I was getting nowhere and hated everyone and everything but those awful dark days when I felt like giving up were balanced out with some really good days, days that gave me hope. Days where I really ‘listened’ hard and responded and in turn was given a glimpse of normality…ENERGY! Why keep breathing? Those days gave me a reason. So with never ending encouragement and support from Dr Mickel I persevered. I kept ‘listening’, I kept responding, I kept hoping and I didn’t give up.
Determination has never been something I have lacked (it’s probably one of the personality traits that led me to have CFS but also the one that pulled me out!) and I wanted my happy ever after ending. So, despite my symptoms and my head telling me to rest, I dragged my heavy body for short walks, I got in contact with old school friends, I went to the beach and dipped my toes in the sea, I got on my bike again and went on short bike runs (even if it was just 5 minutes), I started volunteering (one hour a week to start with!), I started working on my chartership in psychology again, I painted, I made jewellery, I sold jewellery, I baked, I sought spiritual guidance, I set goals, I met kind people who brought light into my life, they gave me strength…I eventually found balance. The hard work paid off. I fought a good fight and I fully recovered. I have my health back and I don’t plan on letting it go again. I always knew, deep down, one day it would happen. I would be free from ME. At last I can shower (with no breaks mid hair wash to sit on the toilet seat for a rest!), travel, go for walks whenever and wherever I please (without feeling like I may actually die), go out for coffee with friends, exercise at the gym (miracle!), shop till I drop (in a good way!), go on a night out and dance the night away, go to the cinema, make it all the way round Tesco, cook up a storm in the kitchen, stay up way past 9pm, go running in the park…have a life and enjoy it!
When you have lived with a debilitating chronic condition like CFS/ME which brings your whole life to a standstill, are told that there is no cure and are constantly faced with ignorant attitudes about the condition from every direction, to eventually be free from it and live life again is a truly indescribable feeling. At last, I have said goodbye to the years that said goodbye to me. Never again will a trip to the local shop just across the road feel like an ordeal in case I don’t have the energy to make it back home again!
I also recently made my return to the wonderful world of paid work. I feel somewhat older and wiser with a whole lot more to offer now as a trainee occupational psychologist – and a trained Mickel therapist! I remember when I first started my training a psychologist said to me in order to be good at this type of job you have to have some life experience and a few gray hairs…I’ve defiantly earnt mine! I am no longer just another professional with qualifications but one with personal experience and know first hand about how quickly life can change depending on what cards you’re dealt. I think in order to assist others in any type of healing process it helps if you have been able to heal yourself. I can now see that my sensitivity to energy and emotions that led me to experience ME is in fact a gift. When clients come through my door and sit down to tell me about their journey, their struggle to make steps on that ladder of health, build confidence and achieve their dreams, I can now truly empathise and understand that to sit there in front of me and ask for help has taken a lot of courage. However, I also now know that I can’t ‘fix’ other people and their problems but only help them take responsibility for ‘fixing’ themselves. A firm line has been drawn and I know where others peoples energy fields stop and mine begins. I don’t allow anyone to suck the life out of me!
When I was ill I used to feel so frustrated and envious that everyone around me was busy living there lives while I was reduced to survival instincts some days, unable to achieve the smallest of tasks but I now realise that CFS was a long overdue wake up call. Dr Mickel, you were right, CFS/ME was the worst and best thing that ever happened to me. It was horribly bitter but with a sweet aftertaste! It forced me to stop my too hectic life, get off the wheel and stop running. I had no choice but to sit and listen and pay attention to myself for a whole 2 years a huge challenge for someone who has always felt the need to keep going, keep achieving, keep pushing, keep moving. At the time It felt like torture but I can now see it made room for me to explore my life lessons and to rediscover my true passions…to reconnect with my ‘higher-self’…some might say.
It brought me down from too far a height until my feet touched the earth again. So, I think it’s fair to say, CFS, for me, has been a great teacher and for those who are forced to experience it, I believe, seeing it in this light is the only way to endure it. Some lessons have to be learned the hard way. So embrace, observe, listen and learn. Easier said than done, I know (and I don’t for one second suggest you have to try and do all this with grace!). And the end result? I’m a much stronger and happier person than I ever was before, no longer the quiet walk over, but the confident, assertive and healthy young woman I always wanted to be. I’ve finally started listening and responding to my own primary emotions instead of only listening and responding to those of others. My proudest achievement is no longer gaining a degree or embarking on a career which involves helping others but it is being able to help and understand myself and eventually free myself from the invisible prison CFS had created.
Some things are hard to put into words but I will try – From the bottom of my heart, thank you Dr Mickel, for saving my lost soul, for teaching me how to ‘listen’, for understanding my struggles when no one else really could, for never giving up on me or making me feel like a burden and for helping me get my health, life and sparkle back! I found an old card an ex-client of mine gave me the other day and in it he wrote “someone once said to me humanity will need lighthouses to guide them to safety. Thanks for being my lighthouse”. I now know exactly what he means. I guess we all need lighthouses, no matter side of the table we sit on.
Thank you, Dr Mickel, for being mine. Your work, your spirit, your compassion and the nuggets of wisdom you share are truly inspiring and I hope my story gives hope to other sufferers that you really can recover from CFS/ME and find the path your meant to be on. There are better days to come.
Never give up. The key is to ‘listen’.