My First Relapse

Christchurch continued to rattle its way through the aftershocks that persisted in the months that followed the February earthquake. Thankfully the strength of the tremors gradually diminished and with it my fears that there would be another big one. Even so, Christchurch remained in ruins and I had no yearning to return to New Zealand permanently even though I was finding that settling into Newcastle life wasn’t an easy task for a middle-aged woman on her own.

I later learned that Newcastle has earned itself a reputation as being a notoriously hard place to meet people. Apart from a handful of work contacts and my sister in law, who was a lifeline as she lived just an hours drive south of Newcastle, I was pretty much on my own. I’m generally quite happy in my own company, but coming from a small community where you can’t walk down the street without seeing someone you know, I began to feel quite lonely and isolated. My daughter on the other hand, had no such difficulties. Newcastle is a University town and the people in her age group were possibly not quite so set within their own social groups as Novocastrians over the age of about forty.

It goes without saying that I was very excited at the prospect of returning to Christchurch for my son’s graduation in April 2012. Not only would I be present for such a momentous event in my son’s life, my sister and her partner were flying out from England, my two sisters in law would be there and after all the ceremonies were over I was looking forward to catching up with old crowd in Diamond Harbour.

It was whilst I was at the graduation ceremony itself that this vague feeling of weakness in my legs first began. It was only a very small cloud on an otherwise brilliant day that was a not only a celebration of my son’s graduation, but it also seemed to mark the end of his horrific cancer journey and the end to the agonising torment of the earthquakes. Yet for me it was a beginning. The beginning of a baffling, frustrating and extremely expensive period of my life that became increasingly dominated by health issues.

It is perhaps not coincidental that this was at exactly the time when menopause first started to rear its ugly head. Hot flushes and overwhelming tiredness were bad enough but the increasing weakness in my right leg had caused me to compensate my gait and I started to develop a sensation like a trapped nerve in my left buttock. I was still functioning reasonably normally and had no difficulties working a full-time job but most of the time I felt exhausted, disorientated and totally out of alignment, both physically and mentally. Determined to get to the bottom of the problem, I regularly visited my local GP who was every bit as mystified as I was. I’m sure he thought I was just experiencing some imaginary menopausal fantasy since all the x-rays and MRI scan of my lower lumber spine showed nothing except ‘normal degeneration for my age’. He suggested I go and get a little bit of physio, which made not one jot of difference.

I had to face the fact that my financial position was not robust enough to sustain the growing cost of these unsuccessful medical investigations and treatments. This really worried me and I would lie awake at night with my legs propped up on pillows to ease the cramps and the back pain, trying to stay positive, saying affirmations in the desperate hope that the universal Law of Attraction would eventually kick in and give me the boost that I so badly needed. I never breathed a word about my financial plight to another living soul because I felt such a deep sense of shame. That someone in their fifties was struggling like a teenager freshly out of school.

I could imagine my ex-husband mocking me. He had predicted that this would come about before I had left him and had painted a picture of me growing old alone and penniless. Not only had that come to pass but now I was becoming more and more disabled with this mystery affliction. I had previously been extremely fortunate with my health and hadn’t suffered so much as a cold since my son was at day-care. Things had to get better. They must. It wasn’t for lack of trying. I’d done everything in my power to improve my situation. I’d taught myself Excel and created a whole new method of doing freight costings. I’d written an entire series of children’s books that I’d tried so hard to get published. I’d searched for higher paid work and even moved to Australia in order to do so. What more did the fucking Universe want from me?

It was whilst I was in the midst of these dark nights of the soul that I received a phone call from New Zealand which plucked me from the quicksand of despair that was slowly but surely swallowing me up. I was out with my daughter one evening when an old friend phoned to say he was coming over to Australia in a few months’ time and would I like to catch up. Over the next few weeks we talked on the phone regularly and arranged to go away to Fraser Island for a week or so after the Easter break. This was exactly the boost I needed. With this exciting trip on the horizon I enthusiastically launched into a programme of chiropractic visits, acupuncture and made regular visits to the physiotherapy gym. I had my hair cut short and went out and bought myself new clothes to take away on holiday. I couldn’t afford it of course but I was certainly feeling a lot happier and more optimistic about the future.

I booked our trip to Fraser Island and organised it so that we both flew into Brisbane on the same day, drove up to Noosa for three nights, then caught the ferry to Fraser Island for three nights, back down to the Gold Coast for a night and had two nights at Mount Tamborine before I flew back to Newcastle and he back to New Zealand. Perfect! At least it might have been had I not decided to see a Bowen therapist that my boss had highly recommended. I was very keen to do this as I was now certain that the persistent muscle twitches down my legs that had been interfering with my sleep was simply a due to sciatica or a pinched nerve. I was disappointed to find that she was fully booked, however the day before I was due to fly out I received a phone call to say she’d had a cancellation. Although I had taken the day off in order to carry out a rigorous repairs and maintenance schedule that involved colouring my hair, waxing, packing and painting my nails, I abandoned everything and rushed to the appointment. Clearly this was a sign that my problem would be cured at exactly the right time.

I had seen a Bowen therapist a few months earlier but this one had a reputation for being extremely thorough. She went through a sequence of moves before halting around the area of my right calf and asked me if I was aware that I had a degenerated calf muscle. I was genuinely surprised and said that I wasn’t, but my legs did twitch quite a lot and asked if that might be what was causing it. She said that it might be nothing more than an old injury but strongly advised me to see a doctor to get it checked because it could be an indication of something quite serious.

Up until that point I hadn’t considered that my problem might be “something quite serious”. I’d passed it off as being one of a number of benign yet chronically painful and irritating conditions like a trapped nerve, sciatica or piriformis syndrome and I drove home feeling quite uneasy. I wanted to go to the doctor and get it sorted immediately but I wouldn’t be able to get an appointment before I flew out the following day and even if I could there would doubtless be tests and specialist visits before it could be successfully diagnosed.

What on earth was ‘it’ likely to be anyway, I wondered? And then I made the fatal mistake of Googling “calf muscle wasting twitching legs”. I was greeted with a full page of websites containing the ominous indications that are associated with the onset of Amyotrophic Lateral Sclerosis (ALS), also known as Motor Neurons Disease. On the rare occasions when I’ve succumbed to that cheerless pursuit of turning to the internet to provide a medical diagnosis, there were normally three or four missing symptoms or background circumstances that precluded me from believing I was in any danger of suffering anything life threatening. But this was different. This was describing all my symptoms down to the letter.

Our trip away was great fun given the circumstances, but as hard as I tried to escape the horrific memory of those terrifying Google search results, the more unwelcome reminders kept popping up. An interview on the radio with someone recently diagnosed with motor neuron disease campaigning for voluntary euthanasia. Steven Hawking presenting a talk on the television. An article in the Mount Tamborine Times about a local identity who recently died of ALS due to malnutrition and dehydration because the muscles that controlled swallowing had ceased to function.

For the duration of the holiday, sleep became physically and mentally impossible without the assistance of large amounts of alcohol. My poor friend who instead of finding himself in bed with a sexy woman wearing nothing but Chanel No. 5 and a smile, had found himself next to a slightly pissed, twitching, sweaty, menopausal mess who was wide awake at 3:00am playing Candy Crush and smelling strongly of liniment.

The more panic-stricken I became the worse I felt and by the time we got to Coolangatta airport to board our respective planes, my legs were too weak to climb the stairs of the aircraft and I needed wheelchair assistance and a hoist to get onto the plane.

Looking back on it now I think that I had just experienced my first MS relapse.