All anyone can talk about at the moment is the new coronavirus (COVID-19), and lots of people – whatever their health is looking like currently – are scared about what it means for them. But being in a high risk category – one where you’re consistently labelled as ‘The Vulnerable’ – makes life even more difficult.
I have the relapsing form of MS, and the government’s guidance for what we need to do in light of COVID-19 is still evolving. But it isn’t just the risk of getting the virus that’s causing alarm, or being afraid to leave your house and being surrounded by people who could pass it on. As someone with MS, there’s so many other things to think about.
For anyone missing the pub
More than 130,000 of us live with MS in the UK and loneliness and isolation are already a huge problem for many of us, affecting three in five people with MS. For anyone already missing the pub, on Monday we were told we – along with other vulnerable groups – may soon have to self-isolate for up to 12 weeks. As well as the obvious social disadvantage, not being able to see friends and family could make daily living itself impossible, as so many of us relying on others to provide extra support for daily tasks.
Toilet paper vs. treatment
One major threat people with MS are facing due to coronavirus is their treatment being postponed. For everyone worried about the great toilet paper shortage, I hope this puts things in perspective! I myself was due to have an infusion of an immunosuppressant treatment called alemtuzumab at the beginning of April this year. Unfortunately due to the way it works – it wipes out my white blood cells – having my medication as planned could put me in a critical position: at greater risk of contracting the virus, and also less able to protect myself if I did get it.
I’m told that postponing my treatment for a few months is unlikely to cause any problems or future progression, but what happens if it goes on much longer, I don’t know. Scarily, we’re being told this situation could last into early next year, so who knows when I’ll be able to get that next infusion. I understand that all of us are in the dark, and nobody can have these answers currently, but that doesn’t put my mind – or anyone else’s – at rest.
The impact this has had on my mental health has been tough. I’m very anxious that the halt on my treatment could cause my condition to progress sooner, and also potential relapses. These worries are of course causing a lot of stress, which can make MS worse.
Life on hold
Sad as it sounds, I already feel that MS has stolen two years of my twenties, so it’s devastating for something like this to put it on hold even further. Even if there is nothing we can do about it. For a whole year I have been waiting to have round two of my medication, saying: ‘after round two I’ll be able to do this, and that, maybe I’ll see more success, I’ll try to go back to work…’ etc. To have that taken away is devastating, but I suppose – as hard as it may be – we just have to take one day at a time, and play the waiting game again.
Money, money, money
Jobs, finances and the question of whether my partner must self-isolate too are among the many new things keeping me awake at night. If I am to socially distance myself – and possibly even self-isolate for 12 weeks – surely my partner travelling into central London every day via the tube, when working on a site with over 1000 people, should be doing the same to protect me? But if he isn’t working, how would we manage the rent, pay for food shopping, our phone bills… the Sky?!
As much as we need entertainment now it’s obviously just the essentials that really matter, but without going to work even these aren’t affordable. Likewise it’s all well and good the government saying we should work from home, but many people with MS aren’t able to. Knowing that, for your health, you shouldn’t be in work but feeling you have to in order to get by is impossible. More support and guidance definitely needs to be given by the government and also by employers.
So what can we do?
All of these things mount up, and the government needs to be doing all they can to give us clarity. The guidelines aren’t enough at the moment, and we all need a little bit more information to help us understand the right measures to take.
As for supermarkets, they must put stricter rules in place, and fast. It is difficult enough to food shop as someone with MS, but people buying in bulk and stockpiling are now making it extremely hard for people with autoimmune diseases or underlying health conditions to get basic things we really do need – like paracetamol, toilet roll and soap.
Whether I have it or not, coronavirus is already making life quite difficult. I don’t know what to do or what is going to happen, or how soon things might get better. I am taking each day as it comes, and will be social distancing and self-isolating as needed. My partner is continuing to go to work but we are taking extra measures, as advised by healthcare professionals. When he gets home he sticks his clothes straight in the washing machine and has a shower. While out at work he will of course be washing his hands regularly (!), have hand sanitizer on him at all times, and try to distance himself from others.
I’ve stocked up on disinfectant and am keeping updated with the latest advice. Every day we will follow new guidelines and take each day as it comes until told otherwise.
At this time, I think that is all we can do.
For more information on MS and coronavirus visit mssociety.org.uk, or call the free MS helpline on 0808 800 8000.