A diagnosis of Lyme disease brings with it a conflicting range of emotions. To finally get a diagnosis after months, or even years, of ill-health brings with it a brief sense of euphoria, quickly followed by a fall in to the depths of disbelief when you are told that despite the ‘label’, there is no cure for the disease and its many co-infections.
There are few specialists in Lyme disease in the UK and sadly not enough is known about how to treat the multitude of health issues in the general medical community. Many people are often misdiagnosed with other health conditions such as Chronic Fatigue Syndrome, Fibromyalgia, MS, IBS, migraine and Central Sensitivity Syndrome, so finding your way through the maze can be both complex and frustrating. The search for specialist help, detailed tests and the many possible treatments that might help means that many people spend vast amounts of money with few, if any, health improvements.
The symptoms of Lyme are multiple and complex, which is why many people struggle to get an accurate diagnosis. My own health went into serious decline, with symptoms including fever, extreme pain, numbness, lack of concentration, barely being able to walk, memory loss, an inability to sleep and a brain ‘fog’ that left me searching the depths of my empty mind for words to put in to a sentence. For days and weeks on end I was unable to get out of bed. Caring for oneself and the normality of day-to-day life disappeared; the ability to work quickly ground to a halt.
Living with chronic Lyme disease is the most painful and debilitating experience of my entire life. Many suffer with deep depression as a consequence – 18 months in, I very nearly took my own life. The pain and constant feeling of being electrocuted from my feet up was excruciating. It got to the stage where I just did not want to spend one more day in such severe pain. But because of the love of those nearest to me, I talked myself down over a few days and made myself a promise that no matter what I had to face in the future, I would be able to deal with it.
Prior to my diagnosis, I had never heard of Lyme. Now it dominates and restricts my life as it does for thousands of others.
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To begin with, people rally around desperately wanting you to return to good health. As time goes on and people continue with their own lives and daily challenges, they start to drop away. As you continue to decline, social invitations start to dry up because the constant pain and exhaustion means you can’t get out of the house or cope due to an increased sensitivity to noise and light.
Fortunately, I am blessed with a wonderful network of family, neighbours and friends who have kept me sane and help where and when needed.
Where doctors and others haven’t been able to help me, I now know more about nutrition and health than I ever did previously.
I have also learnt that I am much more resilient and mentally strong than I ever imagined. Having always been very independent, I have learnt to ask for help but have also let go of several people from my life that I once considered to be good friends, but who were draining the little energy I had.
In the first year or so of ill-health, I used to say that I just wanted my life back but having learnt so much about myself, I don’t say that any more.
Instead, I want a new life. One where I have a greater balance between my work as a coach and having time to pursue a range of new hobbies, with beautiful walks in nature and an abundance of love, laughter and happiness.
Three and a half years in, I remain severely compromised in what I can do. The constant pain and extreme fatigue, in amongst a multitude of other issues, means I can still go for days without being able to leave the house. When I do go out, it can take several days to recover.
But it is the vision of my new life that I am working towards. It is that vision that keeps me sane on my worst days and that drives my thirst for knowledge and understanding of how I can get myself well.
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