She's coping well with Multiple Sclerosis
A disease may be incurable but this does not mean we give up. What it means for the hero warrior that we have inside us all, is it is time to fight back. But this does not mean blindly going at things like a bull at a gate. The Hero is not stupid; to the contrary, he or she is very smart indeed. Heros are wily survivors, not martyrs or Kamikazes. Heros are leaders; they explore unfamiliar territories and lead us to better things. The hero lives a life well-lived.
I am publishing here, the story of one such hero. Faced with a devastating diagnosis of Multiple Sclerosis, she did not give up; instead, she began her very own Hero's Journey. While it can never be said she is cured, the fact is she is now much better off than when she first began her quest. All of us can take lessons from her experience. The main lessons, I take are these:
Be forever optimistic and aim to be a diagnostic outlier. For example, Keith was given six months to live from a disease nobody survives for more than a year or so. That was longer than a decade ago (I've lost count of the exact number of years). He's still going strong despite the disease.
Use science to chart your course and be sure to retake your bearings at regular intervals so that you can adjust your route accordingly.
Identify the 1001 factors - the lot - the obvious through to the most insignificant, then have a plan to patiently chip away at each one like a thousand drops of water on a rock. Wear each factor away one grain at a time for as long as it takes to make each one truly insignificant.
Another way I like to look at things is to compare your patient, multifactoral health strategy with the investment of a substantial sum of money in the share market. First of all, the wise investor has a diverse portfolio, second, they take a long-term view of their investment: years - not months - and they seldom sell when the market has dropped. As sure as the sun rises in the morning, so will the long-term and multifactoral investment in your health.
Here is what she wrote:
In December 2018 my fingertips went numb. Pain in my hands increased over 10 weeks until it felt like they were constantly being crushed. Let’s skim over the early agonising weeks and all the testing to no avail. I was in despair at continually being told a referral to a neurologist was months away. That seemed simply impossible.
My GP and the A&E doctors were awesome - we talked over other options. We paid to see a neurologist privately, and for a raft of tests and an MRI - the cost hurt almost as much as my hands. MRIs showed a spinal cord lesion that had doubled in size in six weeks. In hindsight, getting fast information was invaluable and almost certainly avoided further nerve damage.
After a lifetime of good health, at 49 I was diagnosed with Multiple Sclerosis. No previous signs, no family history but there it was.
"It is what it is", that’s what I thought then and I always come back to it. I didn’t cry, I didn’t get overwhelmed nor dwell on worse case scenarios. My husband and I got serious. We were methodical, making lists of what needed to be addressed in the next month, in six months, in the first year. We researched, confining ourselves to formal medical studies, ignoring the endless clickbait. As well as pharmaceuticals, we read about the benefits of fasting, meditation, exercise, supplements, the cold, herbs and helminths.
I did anything that seemed worth a try. I never said anything was too tough because it wasn’t - nothing is harder than being really really sick. My days are a mix of self-care, clean eating, cold showers, colder swims, tooth flossing, bracing walks, meditation, yoga, rest and love. I am learning how to live as well as I possibly can, something that ‘perfect health’ never taught me.
We told our teenage kids all we knew at every stage no drama. I’m glad we did, it worked for us. Soon I told our close friends and family – all good, they are the best of people. About three months later, when I was medicated enough to get out and about again, I told my wider circles via a Facebook post. I shared all my symptoms, invisible to others, on the basis that full disclosure meant nobody had to tiptoe around me or ask after the details of my health, there’s way more interesting stuff to talk about. The first thing I asked in that post was to have a good swear for me – I got so many hilarious photos and messages from around the world, man I needed those.
So now, a couple of years on, I’m back in the public health system which is narrow but very efficient after a diagnosis. I am aggressively positive about the future. I live with some pain but it will go. My energy levels seem to have li