Girl Running in Field at Sunset

Recovery Journey

Chronic illness can take a lifetime to develop. Just because someone says there is no cure, doesn't mean there isn't a healthful resolution, and perhaps, it might be the best gift of your life.

 

Looking back with the wisdom and hindsight I have now, I can see that my development of Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia and Complex Post Traumatic Stress Injury (CPTSD/CPTSI) were a long time coming. I don't know how much of the problem was me denying anything was wrong, and how much was because society, doctors and specialists kept telling nothing was. 


I was a very sensitive child and the usual teasing and bullying from my 2 elder brothers wounded me deeply. I adored them, and I couldn't understand why they were so beastly to me. At the beginning of each term as they packed their trunks to return to boarding school, I always experienced a heightening of this confusion - I couldn't wait for them to go so the teasing would stop but I also dreaded not having them around and being on my own all the time again. 


As an infant, I suffered recurrent ear infections, treated with antibiotics, and I remember being given phenergan, a sedative, and being sent straight back to bed when I had night terrors for years. I developed severe hay fever when I started at school and I would have to wear sunglasses to help protect my sore swollen eyes, take antihistamines and nasal sprays to calm my irritated skin. The other kids didn't responded with kindness or understanding.


I had a nasty accident on my bike after my first cycling proficiency lesson at 9 years old, fracturing my jaw and cheekbone and smashing out my front teeth. This led to over 22 years of surgery, a lot of pain killers and a ton of antibiotics. I finally got teeth that didn't fall out after the birth of my daughter when I was 31. False teeth that needed constant post operative care did not help social acceptance with my peers.


By the age of 15, I had 2 years of tonsillitis virtually every month, and they got removed. That was another 2 years of being almost constantly on penicillin.


Around that time I was getting ready to sit my GCSE exams, and I had my first bout of exhaustion. I was tested for glandular fever, but as the results came back clear, I was sent back to school, made to feel I was just being lazy.


I studied nursing at University College London, and this is when my fibromyalgia first started to express itself. A sore back is a common problem amongst nurses however careful they are with manual handling, but I had a appeared to sustain an injury that prevented me being able to walk more than a few paces without crippling pain. I was prescribed an ever stronger and wider acting cacophony of pharmaceuticals from anti inflammatories to pain receptor blocks, opiates and antidepressants. They didn't really do anything for the pain, and the spinal consultant declared upon examining me that there was nothing wrong with me. 


I had my first experience of non-allopathic medicine after that, seeing a chiropractor and an amazing lady who practiced energy medicine, and tuned me back into Mars. It sounded nuts, but it created a beneficial shift in my well being despite me walking out from the appointment agog at the crazy events of the session!


I had another bout of suspected glandular fever before my finals, but again, test results were fine.  After qualifying I frequently worked 80 to 90 hours a week just to cover my rent and basic living costs. The pressure, and the resulting lack of life resulted in burnout and I left London 7 years after I first arrived and moved back with my mother in Hampshire. 


I was disillusioned with nursing, I wanted to care for people, not just perform the technical tasks and record notes all day. The staff shortages were already acute, even in the early 1990’s. I can not imagine how much worse they are now. So I donned a sharp suit and worked in an office. I decided that all work and no play made me a very dull person (lovingly pointed out by my father), so I worked to play! I would work 12 plus hours a day, 6 days a week, and as soon as I had enough spare cash, Id fly out to see my brother who lived in the West Indies to spend a month sailing, diving and partying. I was also enjoying a full social life in both Hampshire and London - the epitome of burning the candle at both ends!


It worked fine for the next 5 years or so, even when I returned to Nursing after about 18 months of office work. I'd missed nursing, and found that agency work suited me better, rising in the ranks to become a senior H grade nurse running the occupational health department for a year or so in a Surrey hospital as an agency nurse (quite some achievement as well as salary!). I was frequently beset with minor infections of skin, sinuses, stomach and so on, but just took the pills prescribed and carried on regardless.


I was hospitalised for nearly 2 weeks in 1999 with an acute infection of helicobacter pylorus when I started projectile vomiting blood - a lot of blood. Even now, having birthed 2 children, 1 traumatic with lots of medical interventions and the other at home with just an ice cube in my mouth as pain relief, the helicobacter pylorus was by far a worse pain.


I got a full time post working for a private food intolerance testing company and was soon working round the clock for them dealing with international clients late at night and early mornings from home. They were ahead of their time and tried to expand too quickly in the late 1990’s, and had to let me go. I was devastated that I had been fired from a job that I knew I was good at and that I had worked so hard for and it took a toll on my wellbeing.


I got engaged with a plan to be married 18 months later and begin our family soon after then, but fell pregnant before the wedding. The change in my fiancé was immediate, and if I'd known then what I know now, I'd have called off the wedding, but love is blind! The strain grew, especially after the traumatic birth of our son who turned out to be a very high need little soul, and I was constantly in a state of intense exhaustion from his birth onwards. Regardless, I continued striving to be a perfect mother, and perfect housewife, and took on 4 voluntary roles to justify my existence and good fortune at being able to be a full time mother and housewife.


I fell pregnant with our daughter, and we moved home when I was 5 months in. When I say we moved, I actually mean I moved, because my husband hid in the toilet for 3 days before and 3 days after the move, and left the rest to me. My daughter's birth was beautiful even though she was breech (feet first). My midwife ordered 10 days bed rest to recover. I managed about 7 days before I felt compelled to return to my roles, but the difference in my mind-set, having worked closely with the private midwife over the course of my pregnancy, meant I wasn't going to allow myself to be taken advantage of any more. However, it did not address my addiction to work to validate my existence nor my intrinsic low self worth.


Four years later, I'd been the breadwinner of the family without compromising my role as mother or housewife, I just worked around the children's needs, I wanted out. I naively thought that divorce would protect me from the pain of marriage, but after 5 years of constant court action by the other side between 2008 and 2013, not only had I got wiser, I was also even more traumatised, exhausted, fractured and broken. 


Our children lived sometimes equally between us, sometimes full time with me, and I worked around them, managing to maintain our home, surviving on an average of 4 hours sleep a night for about 8 years until I just couldn't stay awake any longer. I’d forgone virtually all social life to the extent no one even bothered to ask. I had no down time, and even if I had, I doubt I would have known what to do with it! Tasks that should have taken me ten minutes took longer and longer, I was in constant pain to agony and  I couldn't think straight, but it was such an insidious slide that I almost didn't notice - I didn't have space or time to think about it. 


It was at this time, in 2016, that I resolved to put my health as my top priority. The GP was still only able to tell me there was nothing wrong with me, despite a growing smorgasbord of symptoms as well as the exhaustion. I had built a good network of colleagues by running the local Federation of Holistic Therapists Local Support Group, and did what is termed “practitioner hopping”. I tried every therapy I could to alleviate the growing crushing of my life - that's how it felt - the life was being slowly squeezed out of me. And I kept on with the 100 mile a day school run, working a full time job plus the running of practice and home. I began to have to cancel more and more clients, taking to begin with a day off here and there, which then grew to a week, a fortnight, but never longer than 3 weeks.


I kept hearing the words of my old homeopath back in 2001 telling me that he was never going to be able to make me well while I was simply doing too much. But as a single mum, what else could I do? I knew it was true, but couldnt see a way round it. Even when I felt my life fading, because I'd look around and see other people managing it all, doing it all, and being fit and healthy and well: I just had to try harder.


Summer 2018 the final stands of my life began to unravel. I had a relatively routine operation that went well, but I never recovered.  The CPTSI I had been struggling alone with for 11 years (there was literally no help on the NHS), along with the exhaustion, I had a full on almighty very public and very painful breakdown. 


The GP was still telling me there was nothing wrong with me. 


I’d I crashed, snapped, exploded, splintered, fell to tiny mushy pieces. 


I became deeply suicidal for months, terrified to be alone but unable to cope with anyone near me. My mother and brother somehow managed to hold me safe enough, partly by insisting I continue with my one day a week job with them running the paper side of the family business.


Finally, after 20 years of asking my GP (demonstrating virtually classic ME/CFS Fibromyalgia symptoms the whole time), I was diagnosed in January 2019. I knew a fair amount about the conditions having worked with clients who suffered over the years, but I had never realised the damage of not being seen, heard or believed prior to diagnosis.


Diagnosis gave me permission to stop fighting - I had nothing left to fight with anyway. My kids moved in with their father and stopped communication with me. I closed my practice. I nearly lost my home but for a visa card, praying one day I'd be able to pay it all off.


I spent the next 5 months virtually bed bound. I continued to drag myself into the car and work for a few hours once a week, and spent the rest of the week recovering. Frequently I couldn't even walk to the bathroom, instead literally crawling on the floor. To begin with, there were many days I couldn't understand what was being said to me, or speak at all. I hid this from my family as much as I could, too ashamed that I wasn't stronger. 


I joined the Chrysalis effect, and began to see Dr Worby for EMDR to help with the CPTSI. Over the preceding years, I had addressed much of the areas of the Chrysalis Effect  program, but few fully comprehensively, and with such a fractured nervous system and mind as was caused by the CPTSD, little of it was able to help until that was resolved. It was like trying to fill a bucket with water, that didn't have a bottom.


Within 3 months of starting weekly therapy with Dr Worby, I was able to attend my brother's birthday, and saw my children for the first time in 7 months. A year after my crash, my daughter moved back home with me, and then the pandemic hit and we grew closer than ever. I returned to practice in November 2020, just 2 days before the new set of lockdowns!

 

A little more detail

My symptom list by 2018

Ive mentioned a few of my symptoms along the way above, but things got very weird by 2019

Why it took so long

20 years is a long time to get a diagnosis.

Keys to Recovery

Having spent well over £20,000 in therapy, Ive got a good idea of what does and what doesnt help