The COVID-19 pandemic has meant big changes for everyone. For some people with MS, and their families, the adjustments needed to stay safe have disrupted everything.
I’m writing this in week 7 (I think…) of lockdown, though to be honest time has become an irrelevant concept at this point. In fact, I’ve been effectively ‘locked down’ since the end of January, when I went to work for the last time before having round two of Lemtrada.
The early days of the outbreak
When coronavirus started to become a real concern in the UK I’d just started to do my first few days of working from home, expecting to be back in the office before April. What actually happened was that my MS nurse got in touch in mid-March and told me to avoid crowds and public transport for the foreseeable future.
Schools were still open, but then my daughter got a mild cough, which meant she needed to stay home. I was a bit relieved, as it meant less chance of the virus being brought home.
I was even more relieved when the rules changed so that everyone in the household needed to stay home if one person had a cough or temperature, meaning that my son needed to stay at home too. Then lockdown happened, and everyone else had to be at home as well.
Am I ‘vulnerable’?
For a brief time, our main challenge was balancing homeschooling and working from home. But then new rules were introduced about the need for some people to be ‘shielded’ and who was considered to be ‘extremely vulnerable’. Though the definitions were pretty vague I was fairly sure I was included, but it took some emails to my MS nurse and a lot of internet research to confirm it.
The MS Society’s website has been a really valuable source of information, whilst Twitter and Facebook have been a great place to rant and find support during this worrying and frustrating time.
Coping with being on the shielding list
The guidance for people on the shielded list says that they shouldn’t leave their home for any reason other than for medical need. They are also advised that they should isolate from the people they share their household with, and that has been harder to deal with than the fear of coronavirus. It meant that my husband had to move out of our bedroom, I had to stop eating or cooking with the rest of the family present.
It also meant that I couldn’t hug or kiss my children, which is such an automatic thing that I had to work really hard not to do it. Telling them to get away from me when they got too near was horrible.
Happily this unpleasant part of shielding didn’t last too long. We worked out that once none of the family had been out for two weeks, they had effectively quarantined so life, well some of it, could return to normal. The problem we then had was getting food.
Difficulties of shopping in lockdown
When lockdown started demand for supermarket delivery services was so high that it was impossible to get a slot. And because I wasn’t added to the shielding list for some time, I couldn’t get a food delivery. I finally managed to get a delivery slot with the supermarket I usually use. With no idea when I’d be able to get another one I had to order a massive amount of food, much of which didn’t actually turn up as it was out of stock.
So far, that’s been the scariest part of lockdown. I don’t think I’ll ever take being able to put food on the table for my kids for granted ever again. I feel ashamed for never taking enough notice of the people who make that happen before and I’ll always be grateful to all of those key workers in future.
Thankfully things now seem to be calming down a bit and, as I’m now on the shielding list, I’ve had a couple of boxes of food delivered by my local authority. I feel lucky as these have helped to bridge the gap.
Accepting the new normal
I have felt, briefly, a bit vulnerable before at times, chronic illness does that to you, but I’ve never thought of myself as ‘a vulnerable person’, let alone ‘extremely vulnerable’. Having that label applied to you makes you feel very differently about yourself.
You’re suddenly dependent on others to look after you and, especially, really rather afraid. There’s so little understood about coronavirus that it’s hard to quantify exactly what the risk is to you and get it in perspective.
I know the only way to cope with this is to take it one day at a time, try to stay positive, and be grateful. Grateful for the support networks that exist, that I’m able to stay safe, and the way almost all of us are coming together to get through it.
It’s a few weeks after I first wrote this, and now the restrictions on shielded people are being lifted in stages over the summer. I had thought that being ‘free’ from shielding would be a massive relief and I’d be ecstatic to start living in the ‘new normal’ we keep being told about. But funnily enough it doesn’t feel like that at all. The outside world feels threatening now, in a way it didn’t before, and the news doesn’t make me feel that other people are acting in a way that will keep me safe.
Once you’ve been told you’re vulnerable, it feels really hard to stop thinking about yourself in that way. I fear the way I see myself has changed forever. Plus, as far as I can tell, it’s reasonable to suspect that I might get told to shield again at some point in the future.
So: more uncertainty, continuing anxiety, and a ‘new normal’ that doesn’t feel normal at all.
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