Last February was knocked out by full on flu-like symptoms and a loss of taste. I was in bed for a week or so and slow to come back to work. The list of symptoms connected to COVID at the time didn’t match mine, so it was only afterwards we realised that was what I’d had.

I’d just begun to get better when I started to have awful backpain. I’d fallen and bruised my back during the half-term, so the hypothesis was a broken rib. I was prescribed the strongest painkillers possible and spent weeks only able to lie on my back or stand up. My main memory of that time is of shuffling round the house at 3am while the kettle boiled so I could ease the pain with a hot water bottle and pop another pill.

I emerged into a world that we’ve become too familiar with now, but at the time felt very different; quiet roads, shut shops and masks everywhere.

I ignored the tingling in the nose, the fingers and toes for a few weeks. Eventually, however, as it ebbed and flowed up my legs, I booked a doctor’s appointment and was referred to a neurologist expecting a diagnosis of long COVID (which was just starting to be reported on at that point).

I’m not going to go through all the events from July last year to March this. So to cut a long and anxious story short, two MRIs, a number of neurology appointments and a lumber puncture later I had my diagnosis. I’ve got multiple sclerosis.

This is a disease I know too much about because my sister, Katie, had it for a couple of decades and died from complications a few years ago. There’s a video of her doing a parachute jump to raise money for the MS Trust on YouTube.

MS is a degenerative disease affecting the nervous system. The immune system basically turns against the body, stripping the neurons of the protective myeline sheath and causing nerve signals to leak away. It can have profound and debilitating effects on the motor system and psychology too. As the video shows, it affected Katie very badly.

But many people live with it for decades, impacted by it, and able to live a life they are happy with. It took me sometime to recognise this and realise that my experience of watching the impact of the disease on Katie wasn’t the inevitable template for me.  It was one possibility, but actually relatively rare.

I have been affected though. My main symptom is fatigue. Given the pattern of Katie’s disease, I hadn’t realised that this is the main symptom reported by people with MS, with a significant majority reporting it as the having the biggest negative impact on their lives. I’ve dropped my hours, am having to take breaks in the day and have stopped all of the community work I was doing at home.

Despite this, I feel relatively lucky. The disease doesn’t appear to be progressing – my MRI scans have all been stable so far. My symptoms are relatively mild and being forced to slow down is reducing my stress levels. I’m not sure my family would say this, but I think I’ve become a calmer person.

And Involve has been fantastic. I’m not going to single out colleagues because they have all been great, but I’ve been able to adapt my hours, to take time to work out what aspects of my role I can do and those that will have to be picked up by others. People have jumped in at last minute to cover for me through-out the past year and I’m able to carry-on doing a job I love.

I’m also on a drug that didn’t exist when my sister was diagnosed. In fact, when she was diagnosed there were basically no treatments. There’s another post brewing about our experiences of being told our diagnosis, but this one is already getting too long.

The drug I’m on selectively takes out part of the immune system, the memory cells. When it works it resets the immune system making it forget that it’s at war with your body. This stops it attacking the myelin. It doesn’t repair the damage, but it does stop it getting worse.

Evidence suggests that it reduces the number of relapses in nearly 60% of those taking it. And some studies suggest that 50% of people don’t have any more relapses, or at least haven’t had one since the drug was licenced 7 years ago. I can’t find the study that concludes this and I’m trying not to get my hopes up too high.*

COVID and MS

I started writing this post on 19th July, ‘Freedom Day’. I want to sign-off with a few musings on how I feel about this.

I have to admit, I’m pretty scared of catching COVID again.

Given that I think it triggered my MS (we’ll never know for certain, but the coincidence is striking), I really don’t want to risk catching it and triggering another relapse. Even if my MS wasn’t triggered by COVID, people with MS need to be careful about catching infections; the autoimmune nature disease of the disease means you don’t want hyped-up blood cells hunting down whatever takes their fancy. And finally, that last fear notwithstanding, my treatment has knocked out an important part of my immune system. I’m not totally immune-compromised, but part of my immune system is missing; I’m more at risk of catching things, including COVID.

But my personal, and real, fears shouldn’t dictate policy. Neither should the needs of the nearly four million people on the shielding list. Lockdown has had significant impacts on the economy, people’s jobs and livelihoods, mental health, domestic violence and our children’s education – on this latter I’m all too well aware of the negative effects having watched my children struggle with online learning and have their A’ levels and GCSEs pulled from under them.

But those who have valid fears about any of these things shouldn’t dictate policy either. We have a competing set of priorities which need to be balanced. The government has given us the worst of every world. It’s shifted back and forth from strict lockdown with all the rhetoric focused on public health, to opening up and everything being about the economy.

These things are definitely in tension, but they aren’t in total opposition. But you wouldn’t know it from the media or social media. Battlelines have been drawn between maskers and anti-maskers, between those focused on lockdown for health reasons and those wanting to open the economy up.

I certainly don’t feel safe right now and am adapting my behaviour to minimise my risk (while trying to make sure that my children can socialise, enjoy the summer and hangout with their friends). What I want, and those of you who know my work won’t be surprised to hear this, is a proper deliberation to help the country have the sort of conversation we need about how we live with COVID in a way that helps the country rebuild, keep individuals and communities safe and prosper. Every day the conflict about the right priorities continues will make this harder to achieve.

* one of the things I might do with this blog now is use it as a diary to help me to make sense of my reading of the literature. It’ll largely be focused on the literature about the effects of MS as I learn how to manage my symptoms, but I’m already thinking about scientific evidence, diagnosis and confidence, about policy making, improving the health service and other things.