Why I believe I got sick again after making a Full Recovery from ME/CFS.April 16, 2016 10:07 am
A lot of people have asked me why I think I got sick again after a spending a number of years believing I was fully recovered from ME/CFS. I wanted to share my thoughts on this with you in the hope it will help any of you on your own recovery path, to avoid making similar mistakes to the ones I made…
This is a personal post for me to share, but one that I feel is so important as it includes some of the major lessons I have learned so far.
I was first diagnosed with ME/CFS aged 17 and much of my late teens were spent barely able to lift my head from a pillow. However, after endless appointments with different practitioners, many setbacks along the way and so much trial and error, eventually I reached a place that I believed was full recovery of my health. I felt well, I had energy and I was able to work long hours. I went to the gym, socialised and attended a high energy dance class twice a week. The days of my life being completely ruled by illness were gone and I found myself in a beautiful place of freedom.
There are no words to describe feeling well after so many years feeling so desperately, dreadfully unwell.
I worked hard to get to that place. The ‘recovered’ place. It didn’t just happen by itself. During my first eight years with ME/CFS I tried so many different things to help myself heal. I read hundreds of books on healing, including books on the psychology behind wellness, as well as the ones I read on the physical aspects of healing the body. I followed the instructions of my nutritionist by sticking to a strict anti candida diet for well over 3 years (this meant no sugar, yeast or anything artificial) and I was also doing the techniques taught by the Optimum Health Clinic with a fierce commitment amongst a combination of other things I had learned along the way.
Eventually, over time, it all paid off.
I reached that elusive place that is known as recovery…
With my newfound energy and health, I threw myself into life, embracing the world I had been held back from living in for so long, with an unfaltering enthusiasm. I had discovered NLP and was immersed in the study of the power of the mind during this period of my life, it fascinated me.
I read books by people such as Anthony Robbins and listened to audio by the likes of Jim Rohn and Les Brown. I had such a strong belief that you could create what ever life you desired if you just put your mind to it. It was all very ‘head based’ with not much soul, but I felt empowered and the uplifting energy I felt from discovering this new world, was such a welcome contrast to the lacking of energy of previous years. I felt invincible and the fact I had recovered from such a horrific illness, that for many years I had felt so hopelessly trapped in, was testament to myself that I could do anything.
I set up business working as a Complementary Therapist (I had done my training gradually in the years as I recovered my health). I worked from my treatment room at home and also at two different clinics. I loved being able to make a difference to peoples lives and loved my job. Alongside this, I was doing my NLP and Hypnotherapy Practitioner Training in London with the OHC one weekend a month, which meant regular travelling and extra study. I also did occasional voluntary work for the Local ME groups doing talks and such like. I just wanted to give something back as I knew how desperate it felt to be trapped in that world of chronic illness with no clear way out.
But this wasn’t where it stopped, a year or so into my newfound health, I began working alongside a Network Marketing Company that, at the time, I was blown away by. Suddenly I was at huge events surrounded by people who also loved NLP and ‘positive thinking’ as much as I did. People who were taking their lives into their own hands. Ambitious, determined people. Some of them very wealthy. It felt like the world was my oyster and I suddenly had this opportunity (or so I believed at the time) to make a lot of money and in turn, create the life of my dreams. I became fascinated by the idea of getting wealthy, having a posh car, loads of holidays….you get the idea.
I worked hard. Really hard. I’d get up and start my Complementary Therapy client sessions at 9.30, working until lunchtime. I’d come home, get changed out of my Tunic and into a Suit, before going on to have lunchtime meetings for the Network Marketing Company. After this, I’d go back home, change back into my Tunic, see a couple more clients. Then most evenings I would travel somewhere (sometimes London, which would involve a two hour train journey each way….I know….ridiculous) to run an evening presentation.
My days were so incredibly full. I’d squeeze gym sessions and Dance classes in and also socialised as much as I possibly could too. It didn’t occur to me that I may be over doing it at the time, I just felt energised and was loving my new life.
I believed there was no way I could get unwell again
The things I had done to heal myself, the basic self care stuff such as Meditation, Yoga and Juicing all began to fall by the wayside. I often intended to do these things, but life was so busy that they would just end up way down at the bottom of my priority list. I wasn’t eating well at all, often just grabbing a sandwich on the go. There wasn’t time to focus on Nutrition like I had before. I lived this way for the best part of my mid twenties. I was fully immersed in my achiever mode during this phase of my life, without even realising it, setting endless goals for myself and then wanting the next thing once I had achieved them. Life was hectic and busy with very little balance and very little downtime.
As the years went on, I began to feel old familiar symptoms returning. The constant exhaustion became part of my life once more, but to begin with, it was at a level that I could push through. I started to feel quite spaced out, as if I wasn’t connected to my surroundings. It felt like I was viewing life through a pane of glass. (I now know this to be called depersonalisation / dissociation) But I kept going, I just pushed the symptoms I felt to the back of my mind. I kept life full to the brim so there was no room to even consider the notion of becoming ill again, I guess I was running on adrenaline, once my true energy reserves started to burn out.
If ever I stopped, such as on holiday for example, it felt as if the symptoms and exhaustion got so much worse. It was as if I had to lose myself in my external world to distract myself away from what my body was actually feeling. This is where the use of the Stop Process did me a disservice, I was using it to push symptoms away and deny the messages my body was so desperately trying to send me.
Now, more than ever, I wholeheartedly believe in the mind body connection. Symptoms are a powerful way of our body trying to communicate with us.
Of course, ruminating over how we feel and running thought patterns about symptoms obviously isn’t helpful or healthy, but respecting our body and being receptive to its messages, are something that I think is actually really important.
Pushing symptoms away in a state of denial, can only lead to those symptoms increasing and getting louder in my experience, and this is exactly what I was doing during this time in my life.
In February 2010 things reached breaking point. Mark (my boyfriend at the time) and I had booked a cruise to the Caribbean. I remember in the weeks leading up to it thinking ‘If I can just make it to February, then I can have a nice two week rest, recharge my batteries and everything will be okay again.’ It was as if the thought of that holiday was keeping me afloat somehow.
The night before our flight to Jamaica, we had booked to stay at the airport hotel . Our flight was early the next morning, so we thought it would be a sensible idea to stay at a hotel near the airport to save us getting up early and having a 3 hour drive before a 14 hour flight. I climbed into bed that night and closed my eyes, relief washing over my body. I had made it, it was all going to be okay, I could rest now.
The hours passed….but no sleep came. I was absolutely exhausted, but my brain was wired. The alarm went off at 6am, and I hadn’t even had one minutes sleep.
I dragged myself out of bed, had a shower and pulled on some clothes. I remember the busy airport terminal feeling so overwhelming that day, my exhausted over adrenalised senses making every bright light and sound unbearable. But things quickly went from bad to worse as I was just doing my best to stay upright and fight the dizziness that engulfed my body, the flight ended up being delayed by over 24 hours.
It was two and a half days later when we finally arrived in the Caribbean after a 14 hour flight. My symptoms were so severe by this point, it was as if I had finally been pushed over the edge and catapulted into full blown ME once again. My body shook, the room spun and there was literally zero energy left for my body to function. There are no words to describe the feeling when your body gets to this level of depletion. It truly feels like your body is shutting down organ by organ and forces you to lay flat for its own survival.
The two weeks that were meant to be heavenly, turned out to be my own version of hell. Trapped in a small cabin on a cruise ship, feeling an excruciating level of exhaustion and severe dizziness, whilst at the same time feeling an internal terror at what on earth was happening to me. I felt an added layer of unhelpful guilt on top of the physical suffering, because Mark and I had saved up for so long for this holiday, and it was obviously ruining it for him, but i was powerless to do anything. I pushed myself as hard as I physically could, and I would occasionally try and leave the cabin maybe to get some food or have a short walk around the ship. But it was excruciating.
I struggled sitting at the dinner table each evening, the sounds around me of gentle chatter and plates and glasses being used, felt like a drill being pounded deep into my brain. Being upright was unbearable due to the sensation of the room spinning and the intense weakness in my muscles. I would usually be taken back to my room after a few minutes of unsuccessfully trying to sit through a meal, often before the first course even arrived. The most I could really manage on that holiday was laying on the deck on a sun lounger, with my eyes closed. My symptoms were severe and completely overwhelming. The exhaustion excruciating.
I tried to meditate, to calm my body down. I was applying everything I knew, but nothing was working. Needless to say, the journey home was absolute hell. I was semi conscious on the long haul flight home, by this point, my body was in an absolute mess and as soon as we landed in the UK, I was taken off the plane in a wheelchair and straight into the awaiting ambulance.
From that moment on, I went into the darkest period of my life so far.
I spent many months bedridden, unable to sit up or feed myself and was totally dependent upon my mother for 24 hour care. My body had completely crashed. I was trapped in a body that no longer worked. I couldn’t sit up or open my eyes and continuously had the sensation of falling into a void as I lay in my bed. If I tried to sit up, I shook and the room spun around me. Perhaps the worst thing I experienced during this time of my life, was alongside the serious physical deterioration I felt a high level of anxiety. I don’t mean a little bit anxious, I mean off the scale crippling anxiety. It was as if my entire world had crumbled around me, and with that, came the highest level of terror I have ever experienced. I felt a total loss of control over every aspect of my life, my external life, in terms of being able to sit up, walk, work, see people, but also my inner world. My sense of self was completely destroyed. This intense experience went on for many. many months.
I won’t expand too much at this point on those years following my initial relapse and all that they entailed, but I shall say, that this is the moment my life completely changed. I believe with all my heart, that as awful as it was, it all happened for a reason.
I had lost touch with my true self, my true values and had got swept away with a life filled with over achieving and total disconnection from my body. Working ridiculously long hours, losing sight of what truly mattered and having no sense of balance between work and rest. My life had become all about achieving and reaching the next goal.
It’s as if my body gave me signals to try and steer me back onto the right path, but I ignored its calls, eventually giving the universe no choice but to step in and take me to a place where I was stripped right back.
My entire external world as I knew it, was taken away, including my long term relationship which broke down due to the strain of what was happening to me. I could no longer base my life around achieving and goal setting and defining myself by what I could do…because I could no longer do anything. I couldn’t even wash myself unaided during this period of my life.
Coming face to face with my innermost fears, such as not having any sort of control of my day to day life and having no choice but to actually feel my deepest emotions due to their intensity, taught me some of my most valuable lessons. I began to learn a little about to surrendering to each moment. Echart Tolle’s teaching helped so much with this. When you are physically trapped in your body, learning how to gently begin to surrender to what is (as oppose to the fearful, clutching resistance, that tends to come so much more naturally) can provide glimpses of respite from suffering.
The importance of accepting all emotions was another of my learnings. We often label emotions ‘good’ or ‘bad’ and grasp at the ‘good’ ones whilst rejecting or pushing away the ‘bad’ ones. I have found that embracing all that comes with being human, is a much more healing way to live. Only allowing yourself positive thoughts, and placing ridiculously high expectations on yourself, beating yourself up and giving yourself a hard time if you have a low day or feel anger/anxiety/etc doesn’t allow for true energy and life to flow through you.
During my healing journey this time round I feel like I have gone so much deeper than the healing that took place in my early twenties. I feel more in touch with my true self than ever before and my entire perception of life has changed. I appreciate the small things, such as a flower blooming or the colour of a sky as the sunsets. I know the importance of self care and self love. That true peace and happiness comes from a connection to yourself, your true values and those you love, not from external achievements and monetary wealth.
I still have a way to go on the road to physical health and as many of you already know, I am dealing with the current physiological imbalances and dysfunctions that result from (I believe) the years of pushing myself to the extreme, alongside my genetic predisposition and the initial EBV virus. But the healing I have done on a deeper more soulful level, is something that gets stronger as each month goes by.
There were lessons I needed to learn that I don’t think could be learned any other way than experiencing suffering to such a degree, that I had no choice other than to fully face things and begin to work on my ‘stuff’.
I truly hope this blog post helps any of you experiencing your own healing, to respect and nurture yourself and your body as it heals and to continue to do so when it is fully healed. Healing isn’t something to be done and achieved and then taken for granted, I learned that the hard way. Keeping your body in a balanced state is a lifetime thing and I don’t think we should ever lose touch with that, whether we are in the depths of illness or fully healthy.
Keep nurturing yourself,