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It turned Laura’s life around: recovery from ME/CFS
At the time of writing her recovery story, special needs teacher, wife and mother Laura Cook was soon to be returning to work after maternity leave after recovering from myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). She shared her experience to give comfort and hope to others.
Excerpt from Breakspear Medical Bulletin Issue 41:
It turned her life around; Laura’s ME/CFS recovery story
My name is Laura Cook. I am 29 years old, married and have two adorable children aged three years and seven months.
Whilst at the moment I am tremendously enjoying maternity leave, I am due to go back to work in early December 2016. I teach children who have moderate and severe learning difficulties in a special needs school.
As I write this now, I can honestly say that ME/CFS is a distant, but still rather painful, memory. I was diagnosed with ME/CFS shortly after my marriage in 2009. However, I had been suffering for sometime before then. I had recurring bouts of glandular fever and a very low immune system. Throughout university I was always the first to fall ill. It became a family joke that I had every ‘-itis’ possible: tonsillitis, laryngitis… You name it and I was coming down with it.
Receiving diagnosis
I was diagnosed with severe CFS by my family doctor. Whilst he was supportive, I was offered little practical help. I was prescribed antidepressants and little was done to explain to me what the condition was. I quickly found out that little was actually known about it. After a lot of visits to the surgery, all of which were a huge effort, it was my father who actually came into a consultation and pushed for a referral, saying “There must be someone who fully understands the situation we are in.”
We were referred to St. Bart’s in London. The train journey and then the taxi ride really took every ounce of energy I had. We met with a doctor who informed us that the ward that dealt with fatigue patients had been closed down. He said he would write to my doctor suggesting Cognitive Behavioural Therapy. I left St. Bart’s totally and utterly lost.
The condition had impacted my life in just about every way possible. As a newly qualified teacher, my first year in the profession was incredibly tough. I worked 50+ hour weeks in addition to having a lengthy commute, which I literally dragged myself through. Reflecting on this time it is clear now that I ‘lived to work’, and not ‘worked to live’! I had a constant fear of letting people down, especially my pupils, specifically those due to take exams.
I would leave the house at 7:00am and return at 6:00pm. By this time, I was too exhausted to cook and many nights passed with me sitting in the dark, unable to muster the energy to draw the curtains or even to turn the living room light on. I had to cancel so many social engagements because I simply did not have the energy to get ready, travel or even hold a conversation. Despite all of this, to an outsider, it looked like I was coping. Living like this became normal for me and I became very accomplished at hiding my illness and ploughing through.
How it appeared to others
I felt as though my condition was invisible to others. I was excelling in my career, had good relationships, and was immaculately turned out. On the surface, I looked healthy and happy. However, periodically I would crash; either I would increase my workload and my body would effectively say “enough is enough!” or a relatively minor illness, such as a cold, would completely wipe me out.
These periods of illness were the hardest and I suffered some very black thoughts. At times, I was unable to get out of bed. I struggled enormously to feed and care for myself, my arms ached and weighed so heavily I could hardly lift them. Alongside this, I had shortness of breath and trouble sleeping, which made me very tearful. Simple, everyday tasks were impossible.
I like to think of myself as a fairly intelligent individual; what I found hardest to cope with was what I called brain fog. I would be unable to hold a conversation without getting my words muddled. I struggled enormously to make simple decisions; a cup of tea or coffee seemed like a great dilemma. I was trapped in my own body.
During this time, my family and friends were fantastic and I will be forever grateful for the care and understanding they showed me. Without them, there is no way I would have made it through. I strongly believe the fact they remained positive when there was so little hope helped me recover. The darkest of clouds always had a silver lining.
Breakspear Medical really felt like our last hope
It was in May 2012 when, rather amusingly, a Google search by my not-so-tech-savvy grandmother led us to Breakspear Medical. At this point in my illness, things really could not have got any worse. I was on long term sick leave from work, in enormous amounts of pain and incredibly low. Fatigue had engulfed my very being. As a newly married, young woman my quality of life was very poor. Breakspear Medical really felt like our last hope.
I will never forget our initial consultation. I could barely walk into the consultation room, as every movement was slow and painful. I literally had nothing left. I was far too weak and unwell to see Jean Monro on my own. I could not talk or formulate my thoughts. My husband and mother outlined my condition and spoke for me. As my mother reflects back on this time now, she says I was in total despair. Having been married for three years, my husband and I wanted children but we were told that my body was too weak to carry a child. That news was devastating. Thank goodness we were offered some hope by Jean who felt she could improve my condition and make me better. We clung on to this. At last we felt someone understood.
After a plethora of tests, my treatment at the clinic started in late July 2012 and ended in early September 2012. I was sometimes at the clinic six days a week. The care I was given was exceptional. There were times I lay in bed in tears because I felt like my body just could not take anymore. At my lowest points, the nurses offered hope. I underwent food intolerance testing, low-dose immunotherapy, and was given almost daily IV infusions as well as antiviral medication, IRATHERM® treatment and many, many supplements to take.
I followed all the recommendations to the letter. My diet was drastically changed and I followed this incredibly strictly. And slowly I began to improve.
At the beginning of my treatment, I lay in a bed without a scrap of makeup and as things progressed, I moved to a chair and began to take pride in my appearance again, and towards the end of my treatment plan, I was walking in wearing towering wedges with a full face of makeup. I was becoming me again.
Leaving the clinic after my intensive treatment felt like a victory, as a family we had done it! We were so thankful.
Prior to this illness, I had been one of these irritatingly fortunate people that had everything fall into their lap, education, career, friends, family; but I had taken my health for granted; never again.
Looking back now it seems nothing short of crazy to have begun trying for a baby immediately but my husband and I desperately wanted to start a family. I fell pregnant with Emily in February 2013 and I was incredibly lucky to have a textbook pregnancy. Our beautiful little girl was born in October 2013.
Finishing treatment was by no means the end
Finishing treatment at Breakspear Medical was by no means the end of the journey. Even after my health returned, the psychological impact of it all remained. I was petrified of becoming ill again despite knowing I was looking after myself in the best possible way I could. My parents suggested Cognitive Behavioural Therapy and despite the therapist not actually saying anything different to my family and friends, this helped me enormously.
Four years ago, I was too weak to leave my home, I could not care for myself or hold a conversation. Recently I ran thirteen miles in 2 hours 52 minutes, participating in the Great North Run. Today I am enjoying married life, have two fantastic children, a successful career and am training for my first marathon.
From the very bottom of my heart, I hope that this story offers some comfort and hope to those going through the same or a similar illness. Never let the stumble be the end of your journey, wishing you all luck and the very best.
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