Jenny Those of us with MS – or any other chronic illness, for that matter – know well what it is like to often have to stay at home. Social-distancing and isolation are all too familiar to us. Yet now the UK is in lockdown because of Covid-19 and, finally, us ‘chronics’ are confident – we know this and we can do this.
I know that at times it has been difficult for members of my family to deal with the changes that isolation has imposed. My son has been struggling to motivate himself for schoolwork and my daughter has really been missing her friends. Parenting during a pandemic is a whole other ballgame from how it is usually, at least in my case. Now that they are a bit older, it is harder to amuse the kids in the ways that I was able to a few years ago!
Read: Amusing the Kids When Chronically Exhausted
That’s a whole other blog post but, for now, is it wrong of me to admit that I am actually trying to find the positives aspects of the seclusion that Covid-19 necessitates?
Please don’t feel that I am being flippant; I know that loneliness and isolation affect so many (too many) people around the world and that it can have a significant and detrimental effect on their health and wellbeing. Social isolation is the objective physical separation from other people, whereas loneliness is a subjective distressed feeling of being alone or separated. My thoughts are with people for whom this time in seclusion has been difficult.
So why am I trying to look on the positive side of lockdown? It’s been confirmed that I am one of the highly vulnerable who has to stay indoors for the next 12 weeks, due to my previous HSCT Treatment. In my mind, then, I haven’t got a choice. Yes, in an ideal world, I would have a perfectly functioning body; I’d be able to go on long walks with my family for exercise or take myself out for a run – but I can’t. Instead, I need to look at the benefits of lockdown and concentrate on those.
My Chronic Illness: 5 Ways I am Winning in Lockdown
1. Guilt? What Guilt?
I’ve spoken before about my chronic illness guilt and how at times it can be all-encompassing. It can be hard to deal with feeling like I am letting people down or missing out on things as a result of my health needs. But now, the decisions are being taken out of my hands. The doctors have told me that I have to put my health first, I have to consider my needs… it is something I should be doing anyway, but sometimes the pressure that I put on myself stops me. I still put some expectations on myself in terms of making sure that I am being a good parent in these tricky times but, I have to say, the guilt has lessened.
2. I’ve Changed My Work Practices for the Better
I’ve just written a blog post for the MS Society about how I have adapted my work in reaction to the COVID-19 pandemic and lockdown. Although I have retired from the NHS due to my Multiple Sclerosis, I am lucky in that I can still do a small amount privately from the comfort of my own home. Lockdown has obviously impacted on that, but I have used this opportunity to research about offering my professional skills through Teletherapy and even seen a couple of children in this way. Long term, I would love to be able to offer this as a permanent service; I’m proud of myself for using this time and circumstance to advance my work in a way that will continue to take into account any restrictions that I may have due to my chronic illness.
3. No FOMO
Fear Of Missing Out – FOMO- is pretty much a staple in my life. This is where the internal dialogue comes in… will I regret not doing this? Will I regret not going, even if it uses up my energy allowance for a few days? As I said above, the decisions have been taken out of my hands due to lockdown. There are no pubs, no get-togethers that I have to spend ages getting ready for, no gigs…. suddenly, it is the ‘new norm’ to do everything online. Pub quizzes are on Facebook – I love this one for the MS Society hosted by DJ Scott Mills – I’m having coffee dates with friends on Messenger and I can even take part in virtual art tours. I’m really hoping there will be more of this in the future to benefit those people for whom going out and about is often just not an option.
4. I’m Already A Pro at Keeping My Mind Busy
Home-based activities to keep my mind active? Check. As my chronic illness has progressed, I have had to become more comfortable with keeping myself happy and amused within the home. I have read more, taught myself how to crochet, bought a sewing machine and started learning a language. I also rely on supporting my mental and physical health through reading, meditation apps, YouTube yoga and the MS Gym, all which are easier to do at home. So, apart from having my family around me all day every day (which in itself is distracting!), I can keep my mind and body as active as needed with ease.
5. I’m Even Closer to My Family
I already knew that I was close to my parents and siblings, but our weekly Zoom call together in lockdown just reinforces that. I am ‘seeing’ them without fail every week – something that we don’t always do even though some of my family live within 10 minutes of my house! The enforced time together has also benefitted the relationships within my family home. We’ve set a basic ‘routine’ for the kids which means that they have to do things that are non-screen based until 3pm – whether this is school work, jumping on the trampoline or drawing. As a result of the ‘no WiFi’ time, we are spending more family time together, playing games, cooking together and even tidying together. I like to think that this will be a time that the kids remember with fondness. Don’t get me wrong, it most definitely hasn’t been all roses – there have been many arguments! – but it has been nice seeing the kids getting on better generally and it has reminded us all how much of a laugh we can have together.
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So, those are the ways that I am winning in lockdown. Are you the same? Have you noticed any positives in this difficult time? I would like to reiterate that I recognise that this can also be an extremely trying time for many; I’m thinking of everyone and hoping that you are feeling safe and happy.
Till next time
tonikiernan@hotmail.com
This is a fantastic, uplifting post, Jen. What’s your secret with the guilt? It’s great that it’s lessened, even if just a little. I struggle with guilt a lot, especially since losing my job. I feel like I’m suffocated by it sometimes and no attempts to change thought processes seems to make it any less overwhelming. Definitely need to work on that. I also hope a lot of these initiatives to involve and offer greater inclusion from home last beyond the coronavirus. Keep looking for those positives, Jen. Sending hugs xx
Thanks so much for your comment, Caz, for some reason alert me to it? I wouldn’t say that the guilt has completely gone away but it has helpfully lessened for me, because my big thing was feeling like I can’t do much with the children. I think that I have to try and look at the positives otherwise I’d go a bit mad! Hope that you are ok lovely xxx