Back to the story

I’m aware I’ve deviated somewhat from the tale I started off telling. Part of my problem is that there are a lot of places to go next – not unlike the Choose Your Own Adventure books that I used to love when I was about 9 – and as a lifelong dilettante I just can’t choose which way to go.

(Here’s another diversion: when I remembered Choose Your Own Adventure books, I was obviously obligated to Google them at once. I found this, which is amazing. (Apologies in advance to any readers who are offended by swearing, though my blog will probably not turn out to be ideal reading for you if that’s the case))

Back to the thread, I’m  just going to dive in. After the physiotherapist appointment that kicked this all off, my GP called to tell me they had an appointment for me the next day – probably the only time I’ve been unhappy to be seen so soon because I’ve worked in the NHS for long enough to know that ‘urgent’ generally always means ‘bad’.

My husband and I, with our two-year-old son in tow, were at the surgery in time to do some nervous pacing around the waiting room before the appointment – too antsy to sit down after a sleepless, nauseous night. The GP performed some neurological tests, which I was frighteningly poor at: touching my nose and then touching her held-out finger? Turns out I can’t do that. Standing with feet together and eyes closed and not falling over? Can’t do that either. Walking heel to toe? No chance.

I explained that I had a pretty good idea what was wrong with me, however the GP was a lot more concerned that my symptoms could indicate a brain tumour – something that wasn’t even on my radar. I’ll come clean here and admit that I have been a life-long hypochondriac, and I’m sure I’m not alone among hypochondriacs of the world in that before MS became the spectre it is for me, ‘Brain Tumour’ was up there in the top 5 most often revisited health-related terrors.

So I was referred for an MRI and an appointment with a Consultant Neurologist, on the NHS ‘Two Week Wait’ pathway, for suspected cancer. At this point, it was hard to take in what was happening. In two days I’d gone from thinking that the fear of MS that had almost overcome me could finally be laid to rest and with a bit of physio I’d be back to normal and ready to get on with the rest of my life, to only just holding my mind together and trying to decide which is the least-bad option out of MS or a brain tumour. Most of all, though, I felt like I was in some sort of Kafkaesque nightmare where I’d somehow not realised that there was something seriously wrong with the way my body worked.

Looking back now, it makes me feel exhausted to revisit those horrible few days between seeing the physiotherapist, and the GP, and being seen by the Consultant Neurologist – I can’t really remember how I got to where I am now, to be honest. I know I didn’t really sleep. Finally the Consultant appointment came, at which point my anxiety, fear, and nausea had reached a crescendo. He did another neurological examination with the same almost comical results as before except that this time he also checked my fine motor skills, and it turns out my right hand index finger doesn’t work properly any more – great news for a right-handed person who loves to write!

The Consultant explained, so gently and with such empathy, there was no conclusion to reach, really, other than that those lesions on my six-year-old brain scan have now begun to cause real-live symptoms. What’s more, because I have never had anything that looks remotely like a ‘relapse’ of symptoms – just funny things I can’t do so well any more that are just getting very gradually worse, the type of MS that I likely have (and I don’t even want to use likely for fear of giving myself false hope, because it’s definite) is primary progressive MS. AKA ‘The Worst Type of MS’.

There are many cliches that people use in relation to serious illness. There are all the ‘fight’ tropes, that imply that you can beat cancer, or whatever, if you have enough gritted-teeth determination. There is all the anthropomorphising of illnesses: they are ‘cruel’, ‘evil’. And there is one about the fear of illness being worse than the reality of it, because if you have an illness you can ‘get on with dealing with it’. Well, I’m not sold on the first two of those concepts but in my experience (obviously, and thankfully, limited) the third is absolutely true, at least as far as my psychology goes.

To my amazement, and I’ve imagined the day so many times over the last six years – The Day That I Get Told I Have MS – on the way home from the appointment, I felt utterly elated. I remember reading about Wilko Johnson’s cancer diagnosis, and how he’d described himself as feeling ‘vividly alive’. Now, I am thankfully not as gravely ill as Wilko Johnson was at that time, (and – wonderfully – he is now in remission), but I understood completely what he meant. Even facing a future that was deeply uncertain was so exponentially better than the alternative that I couldn’t help being completely and overwhelmingly grateful to be alive.

I’ve done a lot of reading, and there are things I can do that might reduce the impact this disease has on me. Reducing stress, maximising happiness, and eating well are good places to start, and so I’ve ended up here, writing about the ‘journey’ (though I hate that word) that I’m on – my quest to wring every drop of joy out of my life from here on in – because there is so much joy to be had.

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