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spooniemumoftwo · 3 years

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Parenting through Lockdown and Covid-19 with ME CFS

Parenting is the best, and most rewarding thing I've ever done, and yet at times, its equally the hardest job in the world. Adding ME CFS into the mix complicates things further at times, but we work through it, and become stronger as a family unit. However, also adding a global pandemic into the mix...now, that is a different story!

What a year 2020 has been!

The last nearly twelve months have been full of confusion, anxiety and a different everyday living for most people. Imagine all that change, emotional and physical stress, and required resilience on top of a pre-existing chronic illness.

Up until nine months ago, things were fairly normal, or as normal as they have been since my ME CFS diagnosis. My ME symptoms were being managed and I was maintaining a slower but relatively steady pace of life. As many others, I was worried about the possibility of catching the Covid-19 virus, and the potential impact of that on myself, my family and obviously my current health. There was the added concern that many others shared, about lockdown, working from home and home schooling! What a minefield!

One of my children has ADHD and anxiety, and had already demonstrated that she was worried about what was happening. The day schools closed was rough! We all cried that day, a lot! Whilst dealing with my own anxieties about the short term plans, myself and my husband found ourselves managing our children’s anxieties as well. Trying to reassure them that they WOULD be going back to school, that working from home COULD be fun, and that things WOULD go back to normal at some point, whilst not knowing or believing when, or even if, this would all happen.

We started our new routine on the Monday. Home schooling with an attempt at a timetable to meet everyone’s needs, and working from home for 30 hours a week around home schooling. I’m not sure there were enough hours in the day or the week but we managed it, just! The main focus had to be helping our children regulate their emotions; allowing them time to be confused, time to be sad, and time to grieve for their ‘normal’ that had been turned upside down. In my role as Mum, I unintentionally neglected to consider and allow time for me to regulate my own emotions.

Then, at the start of April, I had a positive Covid test!

I was extremely lucky; I had extremely mild symptoms and remained reasonably well other than severe flu-like symptoms. As I know many others are experiencing, the after effects however, have been long lasting to say the least.

Since I tested positive for Covid, my energy levels have reduced significantly. There have been days when I simply do not have the energy to sit up for long at all. I've worked in bed, fully propped up by cushions; I've slept in the day and worked in the evenings when I've felt better, and there have been days where I have been able to work at my desk at home.

I've also found my mobility has decreased since I had Covid, and that I now stumble and lose my footing frequently. My daughter celebrated her birthday in the summer, and like most other children who had birthdays during the lockdowns, was insistent that she wanted to see her friends. To comply with the current guidelines and restrictions at the time, and in order to give her a brief 'escape' from the stress of lockdown restrictions, we arranged a walk in a local forest and arranged for a small number of her friends to be there also with their families so she could say 'hello' from a distance. During this walk, a mere 1 mile at most, I stumbled a significant number of times, and my husband noticed. He was visibly spooked and didn't leave my side for the remainder of the walk. I think this was the point where he became aware of the additional difficulties I was experiencing. My husband approaches life in a very matter of fact and optimistic manner, and often lives by a 'worry about things when they happen' mentality, however, having witnessed my apparent difficulties, his understanding of my ME CFS changed that day! From then on, we have worked together to monitor my difficulties, and to seek support for my ongoing concerning mobility.

During this year, our children have needed variety as well as things to look forward to, more so during lockdowns and times when there have been restrictions on who we could see. Not seeing our family has been a huge disappointment for us, as I'm sure it has for many, and we've tried to come up with new ways to facilitate this contact. Walks with a scarf to maintain 2 metre distances, zoom calls for bingo games and Uno, drive by's to briefly see people in the flesh whilst delivering something, and sending letters and cards. It's been hard! Watching my children struggle with these restrictions has been heart -wrenching. We've had to be resourceful! There have been days when the last thing I've felt able to do is be resourceful or creative; there have been days when I've had to put plans in place days previously, and there have been days where I've had to cancel plans made just to prioritise some rest and recuperation for myself.

My priority throughout this last year, as always, has been my children, and we've made so many lovely memories we will treasure forever. We have been so lucky to have time together that we wouldn't have had if schools hadn't closed. Despite the many positives, it has been the hardest thing I've ever done, and it has been so hard knowing that some days, I just couldn't do the things I felt I needed to do to make them happy.

When reflecting on this last year, a global pandemic has taught me many things:

That my children don't need to do exciting things to be happy, they need time with their family.

That being kind to myself and allowing myself time to rest is essential to allow me to be the Mum I want to be

That my children need rest also, and that we don't have to be out and about at all times

That family and friends are everything. The support we've had from family and friends continues to be the most valuable thing ever. Just to know someone is there for us and cares is huge.

That fresh air with my husband and my children is a therapy in it's own place. Being able to leave the house is a luxury we take for granted and often don't make use of enough, until that freedom is taken away. Two weeks isolation was hard...the same four walls all day every day.

I am a hugger - I always knew I was a tactile person, but it's only since that freedom has been temporarily (I hope!) taken away that I realise how important a hug is for me. Giving hugs is one thing, and I love that I can embrace my children and my husband when they need or want it, as well as when I want or need a hug. However, there are times when I need to be hugged, to be told things are okay and to be reassured.

Parenting through a pandemic was never something I envisaged, however it was something we've had to adapt to quickly. I think everyone, not just parents, have felt out of their depths at times during the last year, and yet, here we are at the start of 2021, a new year, ready to embrace what this year has in store.

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