LIFE AFTER CHRONIC FATIGUE SYNDROME by Arzu Unel-Cleary (Written April 2009)
After 7 years of suffering from Chronic Fatigue Syndrome (CFS) there were two things that I had given up any hope of achieving in my life – having a child and joining my husband on one of his wild trekking adventures.
Last week, whilst 4 months pregnant, I trekked for 6 days along the beautiful Hinchinbrook Island with my 18 month old son and husband. It was one of the most amazing experiences of my life. Only 2 years ago this was all unimaginable and now I am determined to let others know that recovery is possible.
The symptoms and their severity fluctuated. It’s hard to describe what it is like to someone who has never experienced it. Imagine having the flu, the worst hangover and having to run a marathon at the same time. For me it started with the flu and I went from never having missed a day’s work in my life to not being able to wash my own hair.
Like for many suffers with CFS, it took quite some time before someone was able to tell me what on earth was going on. I spent 2 years seeing a string of doctors, specialists, herbalists and the odd quack. Each new doctor ran their full list of tests, only to then tell me it was all clear with the unspoken implication then that it was all in my head. I clearly recall getting yet another set of blood results back, being told I was ‘text book healthy’. I burst into tears at which the doctor tried to prescribe to me anti-depressants!
I was finally sent to a CFS specialist, who told me I was a classic case. At first I was frustrated as it had taken so long for doctors to figure it out. But I also felt vindicated. I wasn’t going crazy. It was real.
However, with the relief of a diagnosis came the devastating news that there is no cure and that I must accept a slower pace of life and try to manage the symptoms.
I was head of fundraising for Europe’s largest overseas development charity with responsibility for a large team and a budget of $16 million. This disease slowly ate away at my life. I had to give up a job I loved, stop socializing, driving and eventually walking from the bedroom to the kitchen was a huge effort. It was like my brain just stopped – I went from being driven and sharp to foggy all the time. I could handle very little sensory stimulation; no bright lights or computer screens – even music was too much at times and lying in bed for days on end I remember feeling like I had ants crawling under my skin. Talking on the phone could put me in bed for a week. Worst of all people didn’t understand what I was going through and would often say I looked great!
At my worst I was bed-bound and reliant on my husband Ian to shower me and make my meals. It was horrible. I was used to being so independent. We got through the hard times, and made the most of the up times, but deep down we used to dream of a normal life. We were living in England at the time, so we decided to move back to Australia, hoping that the warmth and sunshine of Queensland and the beautiful surrounds would make our life more bearable. But it mostly highlighted how little I could do.
Ian told me how he vividly recalls another ‘crash’ on the second day of our honeymoon at a resort in North Queensland. He said he felt so lonely as I was unable to go outside. He’d accepted that at 33 years old he had become his wife’s carer. We had both come to accept that this was to be our life.
Then a phone call changed our lives forever. One of my London friends who had CFS for many years achieved a full recovery using the ‘Lightning Process’. I trusted her so didn’t hesitate. I was a little skeptical and to be honest I was also terrified. I’d tried so many things and what if this didn’t work? But the prospect of a full recovery was so alluring. Back then it was only available in the UK so with wheelchair assistance I made the trip to London.
The training took place in a small clinic in London over 3 days. First the small group was told what was going on within our bodies with CFS. I had never had someone explain it so clearly. Then over the course of the 3 days I learnt what I could do about it.
The Lightning Process recognises CFS as a real physical disease created by a dysfunction of the Autonomic Nervous System – the part of the body responsible for many of the day-to-day functions of our body. One of the things discussed was the role of adrenaline on the body and the consequences of dysfunctional adrenals. This certainly rang true for me, as I had felt ‘wired’ for years, and survived by pushing through situations, then get hit with the inevitable crash.
The process gets you to retrain both your body and your mind to correct this dysfunction. It really felt like I was taking control of my body again. In fact one thing I really liked about the Lightning Process was that it gave me the tools to do something about my own condition.
It required a lot of focus and repetition but it wasn’t difficult, and it surprised me how quickly the results came. By the second day I realized that I had finally found the answers I was looking for. By the end of the training my symptoms were gone and haven’t returned. My improvements was so dramatic and I returned to Australia a new woman ready to live my life to the full.
The Lightning Process may not be for everyone, but I think it’s really important for sufferers to know what is possible. Keep looking for answers and definitely don’t just settle for managing your symptoms and energy levels.
These days it’s hard to even remember what CFS was like. It’s like another lifetime ago, especially as I watch my gorgeous little boy try to help set up camp after a long 6-hour trek through the rain and swamps of Hinchinbrook Island. Since I did the Lightning Process I have travelled, started a family and started a new business. I feel so lucky to have my health again, and I am determined to let others know that a full healthy life is possible.
We once dreamed of living a normal life. We now have a brilliant life!
**You can read a newspaper article written about how Arzu celebrated her 2 year anniversary of CFS Recovery by trekking with her son on her back through torrential rain, amongst the crocodiles and sandflies.
**A local Sunshine Coast Newspaper reports on Arzu’s CFS Recovery