Beating Chronic Fatigue Syndrome
The day I knew I was going to die I struggled awake and just managed to whisper to my maid to dress me. For the first time in three months she was going to get me out of bed and take me out of the house. We were going to the nail parlour. I wasn’t going to die with nails like these.
The ordeal of being carried into and out of the taxi, into the salon and onto a chair exhausted me. When the Chinese manicurist came over she took one look at me and said, “You have to see my Chinese doctor.” It was the last thing I was interested in hearing but was too weak to argue as she set up an appointment for the doctor to visit my home the next day. I planned to have my husband cancel it when I got home.
I had been suffering from Chronic Fatigue Syndrome (CFS) for four years by then and had completely lost control to the debilitating disease. CFS causes pain in muscles and tendons throughout the body coupled with a severe and almost unrelenting fatigue. It’s like the worst case of flu you’ve ever experienced, day in, day out. And if I had had the mental energy it wouldn’t have been hard to trace the disease back to its early warning signs back in 1997.
Do these phrases sound familiar? “I need it by 3:30pm today”, “Can you do me a favour”, “It’s a right deadline”, “We needed it by yesterday”?
That was me in 1997. I was the CEO of a media relations agency in London. Running on adrenaline, caffeine and tons of sugar, I even sneaked the odd glug of vodka from a bottle hidden in my desk – anything to get through the back-to-back meetings, power lunches, frantic phone calls from taxis in between meetings, conference calls at crazy times of the day and working on pitches through the night. I literally never stopped. But this was normal – or so I thought.
In fact I had operated like that since I first arrived in London at 1985 to work on a news desk at AP / Dow Jones. After five years as a journalist in the city of London I had moved on to build and manage my own media relations company.
CFS TAKES HOLD
With hindsight I know that my body was already screaming “STOP!” But it took symptoms including sore throats, recurrent infections, intensive widespread muscle pain and headaches to finally grind me to a halt.
I was diagnosed with Fibromyalgia (a variant of Chronic Fatigue Syndrome) in October 1997. But stubbornly I thought it was all in my head and remained in denial pushing my body even harder and draining my immune system even lower. I kept trying to work, even while I was started on a treatment program prescribed by my doctors. I loved working – it was who I was!
Tuesdays and Thursdays were always great. I’d check in to the hospital on my way to work for an IV of vitamins and lidocaine, that magic painkiller. It meant that I could get back to the office and achieve my To Do list and more, before the pain started again.
I had the obligatory expensive membership at a health club, but I figured, why work out? I got enough exercise carrying my Gucci briefcase all day long.
Weekends – what were they? A quick trip to the supermarket to buy some pre-prepared food, laden with chemicals. More often than not it would be thrown away the following week because by the time I got home I skipped the cooking instructions to crawl exhausted into bed. Of course there was my “special time” which consisted of a quick trip to Harvey Nichols to feed my designer label urge. After all, I had worked hard all week and deserved it, I told myself. After some shopping therapy any spare hours of the weekend would be eaten up by work.
Despite chronic exhaustion I could not sleep, so sleeping tablets were a godsend. I didn’t mind waking up each morning with a mouth that felt like I had been sucking cotton wool or the hung-over effect of the prescribed muscle relaxants, as long as I could get to work.
Once I made it to the office and consumed my coffee and cleared my e-mails the adrenaline would kick in. At 11.00a.m. I would send out for a donut, just what my yeast infected system did not need. Sometimes I would need to gulp a Mars Bar on the way to lunch. The sugar would kick in and give my body yet another boost.
This was the only way I would be able to make sense when I was chatting with clients. My energy windows were getting shorter and shorter and I started to have what I called “spin-outs”. My thoughts would scatter, everything jumbled in my head, I would see dots as my vision blurred, my legs would go weak and my entire body ached.
I had to have lunches and client meetings with one of my staff, as I could no longer remember the details of meetings, despite taking what I thought at the time were coherent notes. Frighteningly, my assistant would often have to hold my hand and help me cross the road – I just could not gather my thoughts make it safely.
It used to take all of my energy and focus just to sit in a meeting and give that intelligent I-am-in-control type of look. And all the while, unknown to me at the time, my gut was growing Candida like a greenhouse sprouting suckling’s in the spring. Sugar and wheat is one of Candida’s best friends.
THE BEGINNING OF THE END
My symptoms were worsening and doctors were insisting that I give up work. As a compromise I reluctantly started trying to reduce my working day. Even so I would only just manage to stagger home, drop my clothes on the floor, call my local restaurant for a delivery, eat it in bed and pass out. I was forced to take more sick days, my temper was volatile, my concentration was shot, my pain levels had peeked with new and various sensitivities to light, touch and food. At this junction doctors had diagnosed more conditions than I can remember from an under active thyroid, autonomic dysfunction, adrenal insufficiency, leaky gut syndrome and hypoglycemia.
I remember one Friday night, when I refused to go and lie in my bedroom. I hated being alone for house on end and felt trapped just lying in bed, too exhausted to be able to even watch TV. My husband made a bed up in our living room and cooked dinner for me. That was the first time I didn’t have the strength to put my fork to my mouth. So my husband fed me.
Somehow, amongst the pain and confusion I still hung on onto my working life. My determination kept me going. During the day I as so exhausted I often fell asleep for a few minutes. But at this stage napping and food were no longer having a positive impact on me, nor were prescribed drugs and the vast amount of vitamins I was pumping into my fragile body.
HONG KONG 2000
Finally, in 2000 I sold my business. My husband and I moved from London to Hong Kong. My health deteriorated still further. I developed a chronic chest infection – and this was the final straw. I was totally bed-bound in this great new place that I was desperate to explore. It was the lowest point in my life, and then, that fateful day, I woke up and knew that was the day I was going to die.
After my trip to the salon to have my nails done my husband called the Chinese doctor in order to cancel the appointment. But not speaking any English he got nowhere. And so the following day to my surprise I woke up one more time, to find a curious Chinese lady looking down at me. She carried me from my bed to the bedroom chair and proceeded to treat me. It was pure torture. At that time every muscle and joint was so much pain I could hardly bear it.
But within an hour, I had made a remarkable recovery – I actually began to feel human again for the first time in months!
According to the doctor my Chi was completely blocked, so I asked what is Chi? And I plunged into a give year adventure to reclaim my health.
THE LONG ROAD TO RECOVERY
The quick fix the Chinese doctor had given me only lasted a few days before the effects started to wear off, but it had given me the confidence to renew my search for a cure.
I worked on the basis that if a medical professional said it was broken then I’d fight to fix it, whether it was directly related to the underlying condition or not, and turned from the counter-productive western drugs to the east’s holistic treatments.
I became my own guinea pig researching and experimenting with spa treatments, homeopathy, high street acupuncturists, reflexology, back street traditional Chinese doctors that gave me dubious herbal Chinese remedies. I tried breathing techniques, nutrition programs, food allergy treatments, natural remedies for pain relief, aromatherapy, massage, Qigong and meditation…
My journey back to health was the most difficult trip I have ever endured. Being in constant pain 24 hours a day is draining and debilitating, and there were many times when I would think “I can’t go on”. However, acceptance of CFS, keeping faith with my determination to get better and learning new terms such as “grounding”, “pacing” and “listen to your body” pulled me though.
I kept a detailed medical diary and journal to measure the impact new treatments had, and this allowed me to track even the smallest steps forward. Routine and structure were important to get out the hours in terms of difference zones. This helped not only on a physical level but a spiritual level as well. It was vital that I always had an end goal, and this is when my writing became a godsend.
Another lesson was to always put myself at the top of my “To Do” list. Learning to be selfish and focus only on myself was difficult, however after numerous setbacks I learnt to do whatever it took to reclaim my health. It is so easy to think that you can take that phone call from a friend only to endure renewed pain as a result.
As I became stronger I studied Fung Shui to ensure that everything I could do to reinforce my environment was in place. But at the same time I had to learn to walk away from chores and turn a blind eye to mess, such as a simple pile of laundry on the floor. My energy levels were so depleted it was paramount that I treat my energy reserves as a bank account to be kept in credit and not allowed to become overdrawn.
I built a support network of my maid, my husband, Giorgio Armani my Persian cat and Porche my miniature schnauzer dog. Not only is it critical to have a group you can depend on during your recovery and who understand the condition, but they were the ones who gave me so much inspiration to stay on track,
It was always one step forward and one back, living in fear of a relapse and being unpleasantly surprised by how fragile my health was.
At one of my low points I made a list of memories that I had, that gave me happy, fuzzy and relaxed feelings. It was useful to be able to visualise these memories and find a happy place for my mind, rather than focusing on my own chronic pain.
BACK TO HEALTH
Now I am back, I have started new media relations company, I am writing again and I have become a fully qualified Fung Shui practitioner. Even though I remain acutely aware of my health and the limits my body now places upon me, I am thriving in my new lifestyle. I understand the value of down time, quality time with my family and quality time alone.
But to this day the most valuable tool that I have learnt is to stop, to listen to what my body is telling me and avoid pushing myself beyond my limits.
Chronic Fatigue Syndrome (CFS)
Affects many of the body’s functions, particularly the central nervous system and the immune system. The illness is best described as server fatigue that persists for more than six months, resulting in a substantial reduction of your day-to-day activities. However, CTS is an extremely inconsistent illness with each patient displaying an individual mix of symptoms both in severity and type.
Symptoms most commonly associated with CFS
|The cause of CFS is not yet totally understood by the medical profession. However research shows that irregularities have been found in sufferers in the central nervous system and immune system, including functioning of the hypothalamus (a section of the brain that regulates basic functions as sleep, appetite and temperature control).
Approximately 70% of CFS cases are initially triggered by an underlying viral or other systemic infection. A smaller proportion of cases can be associated with environmental stress such as pollution and other toxic solvents and chemicals that the sufferer may be exposed to. A large proportion of suffers are Type-A over achievers who are stressed and ‘burnt out’ due to chronic overwork.
Whilst reading this article you may have recognised yourself. If so please understand that you are part of a large group of people with this illness. You are not alone. Below there is a list of websites and associations that can offer support to you and those around you.
Breathing Works: www.breathingworks.comHong Kong: Dr. Tim Trodd: www.otandp.com
|Fighting Chronic Fatigue and Fibromyalgia by Raewyn McBain
This book addresses treatments and alternative therapies for the symptoms of chronic fatigue syndrome and fibromyalgia. It is targeted at a non-medical readership and is a step by step practical guide to recovering from such a debilitating illness. The copy covers all solutions to management of the condition from Western medicine and Traditional Chinese Medicine perspectives, including alternative therapies, breathing programs, exercise, diet and fung shui for optimum health. Available in book shops soon.