I like to think of myself as just an ordinary person, trying to live an ordinary life. I often wonder if my friends and family see me that way? The reality is that my life in previous years has become a bit less predictable.. The title of this blog? Well, it kind of helps to paint a picture of how I feel each day. Each day I wonder "what chocolate will I get today?" Will it be a soft squidgy caramel or a hard chewy toffee, or maybe a crunchy praline? Sadly though, chocolates are off my menu, for now anyway.
Let me tell you a bit about me.. If you have known me a while you will remember the days of wild adventure, and late night dancing I loved and was always known for. Those of you who have come to know me in my later years will have seen some of the wild adventure I try to maintain, but certainly not the late night dancing! Perhaps that is, in part, a function of having 2 small children, and a husband who likes to wake early and go to bed early. But it is also the result of a neurological condition which goes by the name of transverse myelitis or TM. Never heard of it? No, I knew almost nothing about it and I'm a Physiotherapist with 13 years of experience.
I believe it started as the result of a throat infection back in 1994. I found myself one morning waking with flu like symptoms and an almighty sore throat. On trying to get out of bed, I quickly found myself in a heap on the floor, unable to use my legs. This was my first year at Uni and fortunately I was surrounded by Physio and nursing students who ably took care of me. Within 10 days I was back at Uni but, from that day onwards, I never quite felt the same.
Thus began a series of attacks that would take me off my feet about every 2-3 years. Subsequent attacks after the first, have seen me out of action for months at a time. I was admitted to A&E on several occasions and test after test performed. Lumbar punctures, MRI scans, blood tests, CT scans, visual evoked response tests, nerve conduction tests, you name it, I probably had it.. Between 3 neurology Consultants no diagnosis was reached, although there was always much speculation of Multiple Sclerosis (MS). As the tests never showed anything definitive I was finally packed off to a psychologist. Yeah, thanks folks...
That really was the hardest to deal with; not knowing... that feeling of being labelled a malingerer, a hypochondriac, call it what you may. That dear friends, is not in my nature. Certainly not when I chose a profession which sets out to help people in similar situations. Why ever would I want to give that up to pretend to be one of them?
Anyway, life had to go on, and on it went. Sometimes it would be easier than at other times. My life needed to change, and some “friends” started to treat me differently. The hectic social life had to be calmed. I moved back to live with my supportive parents and found a less stressful job in a quiet, private hospital. I met a wonderful South African, now my husband, who was not in the least bit phased that maybe I had some unknown condition, or equally could be some psychotic malingerer who, from time to time would be incapable of even the most basic of daily tasks. It is through these times you find out who your friends really are..
Sheer desperation compelled me to find a possible diagnosis. Using my medical knowledge from my physio training, I searched through books, the internet, and contacted many of my professional friends for advice. I was eventually led to nutritional therapy as a way of helping. Maybe not a diagnosis, but it was something. In the years to follow I began to believe with total conviction that, as Gillian McKeith claims, “you are what you eat”.
Nutritional therapy, I have discovered, can provide improvements for a whole host of disorders, diseases and ailments. I know that there are many skeptics out there, but I have seen for myself the results of eating well. It’s amazing how crap food can make you feel crap.. And how many problems can be helped much more by a change in diet than any medication.
So, still with no diagnosis, I came across a yeast. Candida. Little did I know that I was to become quite an expert on this yeast and it’s horrible habits. It was just possible that the weird rash, the post nasal drip and sinusitis, my many food intolerances and the indescribable fatigue, were also a result of this happy little yeast which was probably having a party in my body.
Feeling like there was nothing else to lose, I decided to plough headstrong into the “anti-candida programme”. A brutal dietary regime with supplements and anti-fungals devised by Erica White. Never had I felt so ill, but I had been warned. Die off is a nasty event, and nasty it was! But within a month or so I started to feel like a new person. I went 5 years after changing my diet with almost no symptoms whatsoever. You can’t imagine what a relief that was..
In those 5 years, I travelled the world twice with my husband, working for some of this time, as a Physio, in a rural part of South Africa. Although no symptoms of leg weakness reared their ugly head, I did have my fair share of other illnesses. Typhoid, amoebic dysentry, and ciguatera poisoning. What is that, you may ask?? Ciguatera is a type of poison found in Pacific reef which is transfered to the fish that feed on the reef. My husband and I ate the same fish that he had speared when we were camping overnight on a deserted island. I got sick, he didn’t. It was a long night…
I also, during this time, held down a good job in a prestigious Sports Clinic in West London, treating the likes of Kirsty Gallagher and Matt Perry (of Bath rugby fame, not Friends!), along with many athletes in premiere sports. Whilst working there I became the fittest I have ever been, using their unique techniques of training. I began an MSc in Sport & Exercise Medicine at UWIC, Cardiff, which involved a 2 year post grad diploma, followed by a dissertation in research.
In amongst all this came the children. Two beautiful girls. Mary is the eldest, about to turn 5 at the end of this month, and Jude who is 3. They give me so much joy, and if only I had their energy!! I remained symptom free until Jude was 2 years old.
So, last year was the first relapse I had experienced in 5 years. Pretty devastating. Having been all that time without symptoms, I was beginning to feel that it was all a distant memory, that mysterious illness of mine. But it wasn’t to be.
Crying out to God and to all my Christian friends for prayer, I was then lead through a chain of incredible events. Just 12 months before, we had made a last minute decision to move to Santiago, Chile, on business. It was supposed to be a 6 week stay. Almost 3 years on we are still here! I believe we were moved here for a reason. After 15 years since the initial onset, a series of “coincidences” led me to the best neurologist in Chile, who diagnosed me within 2 appointments with TM. Imagine that. You come to a developing country and find the health care to be superior. Now I had my answer, but still didn’t know much about my future. At least I knew that I wasn’t going mad...
That particular relapse hit me pretty hard, mentally and physically. But not as hard as it hit my girls. They had never seen Mummy unable to get out of bed, walk only with help to the bathroom and sleep for too many hours during the day. They were confused, poor things. How do you explain to children aged 2 and 3 why Mummy can no longer take them to school every day, play in the park, make them treats, or even have enough patience and energy just to play a game with them. It broke my heart to hear Mary, eventually, after a period of misbehaving, tell me that she was upset that I didn’t take her to school anymore. I did my best to keep them informed of everything going on. We made an MRI scanner from blankets and they pretended to be the patients. I was the doctor and made all the loud “toc, toc, toc, bang, bang, bang, bbbrrrr…” sounds that those very clever, but very overwhelming, all engulfing machines make. We looked at my scans. It helped, I think. They started to feel involved, not excluded.
I also had to undergo another series of tests to exclude any other possible conditions. Fortunately, the tests for MS and Devic’s disease, the 2 most likely conditions, were negative. Then followed the treatment. Once other conditions were ruled out the treatment options were narrowed down to just one. Steroids. For 3 days I was hooked up to an intravenous drip, pumping steroids into my system. I was given another medicine to stop it from affecting my stomach. They told me I might get insomnia. They also told me it could make me drowsy. I spent those 3 days and the following week in a blur of fatigue. At least the steroids were helping me regain strength in my legs, even if I could barely stay awake long enough to use them! I was getting stronger.
I consider myself very fortunate. Some people never recover from TM. In fact, they say it follows the rule of thirds; 1/3 recover well or fully, 1/3 show some recovery but are often left with significant disabilities and the other 1/3 never recover. Luckily, I fit into the first 1/3 as, between relapses, I recover enough to live a seemingly “normal” life to the unknowing outsider. Just last week I was skiing, lucky me!
What is less fortunate though, is that most people only get one episode. In rare cases it can be recurrent, as in my case. So I might not be quite so lucky, but hey, I am rare!
Recovery from this episode was somewhat intermittent. I would feel ok one day and weak the next. I often describe it as a light switch being flicked on and off. It would be nice to understand why I can be feeling weak and feeble for 3 days and need to use crutches, then 3 days later be fit enough to ride a bike towing the 2 girls behind it.
Having always kept a close eye on my dietary habits, I started to look for alternatives to the steroid treatment. Trying to do this in my very poor Spanish which I have picked up in our short time here, was a challenge. But I did my best to rise to it. Eventually, after a couple of false starts, I ended up with an immunologist specialising in food allergies. She sent me for a raft of allergy tests. Now I got to see how the other half live. The poor half. I was sent to a hospital in a poor part of town as I would be able to get the tests done quicker and cheaper here. What an eye opener!! Having worked in rural Africa it was not quite so much of a shock, but the standard of care was a million miles away from the hotel like hospitals us expats have the luxury of. I sat amongst the crowds of parents with their young children also waiting for allergy testing.
The outcome of the tests was surprising. All the foods I had been eating, I now was told to avoid. I had been dairy intolerant for 8 years and gluten intolerant for 3. Now I was being told I must eat these foods and avoid the one’s I thought were safe for me. Talk about messing your head around!!
I felt a bit lost for recipes in the beginning, but suddenly I rediscovered the likes of pasta with cheese sauces, and puddings I hadn’t had in years! Like ice cream.. oh yes!! My euphoria in eating so many things I had missed, led to some over indulgence. But hey! Finally I was gaining weight, something I hadn’t done in years, and suddenly everyone stopped asking the dreaded question “What’s wrong, why are you so thin?” If I was so fat, would I constantly be asked the same question? I think not..
Life continued. I gradually returned to “normality”, needing to rely much less on the generosity and support of my lovely friends and the devotion of my dear husband. Still some days were good, some days were bad.. But on the whole I was ok. Occasionally I would be struck off my feet for a few days, and every time we would try to figure out if something I had eaten could be the cause. There never appeared to be any consistency.
On February 27th the massive earthquake struck here in Chile. Fortunately, we were not badly affected by it, but it was enough to send my nerves to Russia and back. We experienced a plethora of aftershocks, some almost as big as the original. I was a bag of nerves for a few weeks waiting for it all to settle. When it did start to settle, bang! Another relapse!
Exactly a year on from the last, this relapse was severe enough to make me relent to using a wheelchair. Solutions to daily living needed to be found, and fast! Ross wouldn’t be able to do the school run every day indefinitely, and I needed more help around the house. So we traded our 3 day a week nana for a 5 day a week, younger model! This has been a real blessing to us.
My mind is constantly searching for answers.. Reasons why.. I think we all have a need to know why things happen.
In this search I saw a pattern. In the period leading up to both relapses I had been much less careful with my diet. I had not restricted my sugar intake, had been enjoying trying the wines here in Chile, and generally eating richer, more refined foods. Could it just be that the candida was partying again? Perhaps the stress of the earthquake was enough to send me over the edge..
I contacted Erica White and her team of nutritionists and am currently back on the anti-candida regime. I have gone through the die off phase again and am on one of the strictest diets you could imagine. No fruit for a whole year! I have a list of supplements as long as my arm to ensure I get the sufficient amount of all vitamins and minerals. And I am about to take some more tests to see how my adrenal glands are coping, and how good my digestion is.
On the positive side, I am functioning. The wheelchair went, and soon after, so did the crutches. I need them occasionally for a day or 2, but not much. I am sleeping better. I haven’t lost loads of weight by cutting out sugar, just a little. I have more energy and escaped the awful flu that everyone else in our house had last month. I’m doing good! I have plenty of time to rest, thanks to our nana, who runs around delivering our children to school and activities. I am adding back in forbidden foods and enjoying them without consequence.
And, I have just completed my Masters dissertation. So many times I have been close to giving up, but couldn’t bring myself to let it go. And I made it! Now, I hope it is good enough to make the grade…
Anyway. That’s an introduction to me.. I have little idea what the future holds in terms of a prognosis. But at least now we can plan for the worst and enjoy the best.
Life is like a box of chocolates… and I challenge any of you to say that chocolates are not good!
