Living With Someone Who Has Long COVID

Hello,

I’m Simon, Katie’s husband, and for this week’s blog she and Andrea invited me to share some thoughts on living with someone who suffers from the effects of Long COVID. The last few years have been quite a journey of highs and lows. A lot of the content ThriveNinety shares focuses on people experiencing Long COVID and post-infection conditions, but they are not the only people impacted. Long COVID can have wide reaching impacts changing the lives of family members too. I hope my perspective is helpful to those in the Long COVID community.

As Katie has written about before, in March 2020 we were 10 months into the chaotic and brilliant world of being new parents. Our daughter, ever the mover, had just taken her first steps and we were looking forward to the adventures we were in for as she started to experience a whole new world of motion. I vividly remember the day in March 2020 when Katie called me on her walk back from the train station to tell me that she wasn’t feeling great and that, with the looming pandemic and COVID cases rising, it might be best to make up the spare room, stock it with some supplies and to take sensible precautions for her to isolate. Her work with the NHS in the previous weeks had given her a unique insight into how a pandemic might sweep across the UK, and she wanted to be sure we were doing the right things to keep our family healthy and safe.

The next 10 days were very strange. Leaving trays of food outside a closed bedroom door. Face Time calls even though we were only 20 feet away from each other. Waving up to the spare bedroom window as our daughter teetered about in the garden. Thankfully, all very manageable and we were so very grateful for the space and time we had to see out the isolation period. There was such a palpable sense of relief when we could all see each other again, which was replicated around the world, I’m sure. Little did we realise that it was just the beginning of the long-term impacts of that COVID infection on our family.

Our daughter and I had avoided getting sick. Life returned to some sort of new normality pretty quickly. Like millions of others during the lockdown periods, we juggled work and parenthood as best we could, enjoying the time together and anxious about what was unfolding on the news every night. The nature of Katie’s work, doing strategy and planning for the health system, meant that she never really switched off from the pandemic during the day; as weeks turned to months, our new family rhythm, bizarre as it was, became a comfort.

It really wasn’t until the worst of the lockdowns were over, and we tried to get back to our previous rhythm, that it became clear to me that something had significantly changed for Katie. While no one was leaving the house much and everything seemed a little off anyway, her Long COVID symptoms were there, but easier to overlook. Once the intensity of work dropped a little, and we were able to poke our heads out from our cocoon, it was clear that she wasn’t really herself. She had always been the big picture thinker in the family, planning ahead and making sure that we were on the right path. We’d always shared the load around the house, even before we became parents, but it was clear that she wasn’t able to operate at the same level anymore. Little details escaped her; decisions big and small became overwhelming and her energy levels were through the floor. Long COVID was whispered about if you looked in the right places, but there wasn’t a diagnosis, or many care options or even a desire to accept it as a condition. Like most people, I was keen to ‘get back to normal’, get out of the house and be thankful we had come through it unscathed. How wrong I was.

From the outside, it was very difficult to comprehend the change that Katie was experiencing. Outwardly, everything seemed okay – not 100%, but okay. Physically Katie seemed to be coping, except for the fatigue. I put that down to the very long working hours all health professionals were putting in – not understanding the incredible effort needed from her every day to compensate for symptoms and just keep going at a basic level. Forgetfulness? Well, we were both new parents and I knew my own powers of recall were inconsistent to say the least. I wasn’t as good at putting the clues together as I should have been – looking back, that was partly because things like elevated heart rate and shortness of breath were so tricky to see. Even when they became more visible, they didn’t seem like they could be related. I was also keen to move on and for COVID to be over. With the benefit of hindsight, she was also eager to move on, to feel normal and not have her life or ours as a family dogged by symptoms, so did what she could to manage and mask them.

I think it was when we moved to the US that I really began to notice the changes and their impact. I had a few months before my new job started and so I had more time to be around the house. Katie had started work for a new company – but wasn’t her usual, confident self as she faced that transition. She was second guessing all types of decisions, frustrated at her lack of progress and generally out of sorts. We had moved back to her childhood home, a wonderful place to raise a family. But now we were here, she wasn’t enjoying it, and while working remotely she sometimes barely had the energy to leave the house in the course of a week. The outdoor adventures we always talked about became a struggle, the day to day rhythm of life became a chore and I became increasingly aware of the physical symptoms of Long COVID that she was experiencing– ringing in the ears, headaches, aching joints. This was a really difficult time for our family; Long COVID had taken hold and it seemed like there were no answers available.

Thankfully, fate played a role in helping Katie turn the corner. That, and the sheer hard work she invested to try and understand and then manage the issue herself.  Katie’s own research and her hypothesis that the wide ranging spectrum of symptoms were tied to issues with her nervous system, immune system and inflammation. The improvements she saw were small at first – a little more energy, a little more positivity towards the day. Eventually she felt well enough to do more activity and meeting Andrea at the exercise class was a step that, thankfully, accelerated her recovery. She felt, looked and sounded more like herself and I could see a growing sense of purpose that the research and routines she was developing were not just about her but could help other people who were suffering. ThriveNinety was born, with all the wonderful energy and focused on tangible results that followed.

This has been a journey for Katie; but our family has been on this journey too – from exercises to better sleep (sometimes, still a struggle with a small child around), through to diet, we have changed our ways and all feel better for it. My daughter and I do not have Long COVID symptoms, despite getting infections later in the pandemic, but have tried to support Katie’s symptom management adaptations through changes in our everyday lives too. 

If I’m honest some changes are easier than others! Making sure we include activity and exercises like walking into our days was not a huge change for me or for our daughter, who walked early and never stopped moving. Diet is another matter. As a working class kid from South London, food was a staple of our family life. Lots of it, not always the healthiest and designed to be hearty and send us out to school and work with a full stomach and ready for the day. Also, food was one of the things that we could treat ourselves with, so desserts, snacks and “comfort food” have deep associations with celebrations and fun times together. It is a childhood association that I’m sure many others can relate to. Moving to a less processed, more natural diet has been tough after years of not thinking about it at all. Checking ingredients on the supermarket labels was never a thing – and one I still get wrong from time to time. I understand, intellectually, all the benefits. It’s just really hard to make those changes after so long – but we are working at it and my own diet is much healthier than it had been. I feel the benefit and our daughter is growing up enjoying a range of healthy snacks, alongside her Halloween candy. I still have the occasional late night sandwich and snacks – but I’m much better than I was and we understand the value of doing this as a family to support Katie, and to improve everyone’s health.

Now, looking back, I can only marvel at how Katie managed the very worst days of her symptoms. From the outside, it was really difficult to get any handle on the issues. I knew there was a problem, but it was hard to truly understand. There was no research, few obvious outward physical signs and, in hindsight, my view was likely colored by my own desire for the whole COVID thing to just be over. Thankfully, Katie and Andrea came together to help find a way forward. Katie and I have talked a lot about that time, when she was feeling at her worst. As the onlooker, you feel pretty helpless. But because so many of the symptoms were ‘under the surface’, it was hard to understand because they were hidden. I’ve now understood what Long COVID means for her and our family and how I can help – in ways small and big.

•   This included things like remembering the ear plugs if we’re going to see some music (in the early days of her recovery the difference for Katie was night and day, and this small adjustment helped us to get back one of activities we always loved doing).
•   Making sure the groceries support an anti-inflammatory diet – because I tend to do the shopping 
•   Just listening – there are still days when it’s tough and so not trying to fix things, but just lending an ear
•   Keeping an eye out for any new Long COVID research and sending it on
•   Remembering that simple things can make a big difference

There will be thousands of families who have gone through what we have, many of them facing much worse circumstances and prolonged difficulties. It’s promising that strides are being made on all fronts, but the road will be a long one. All I can say is that I have seen the progress Katie has made, and I am very grateful for where our new normal is, and the continued improvement that she is experiencing. Living with someone who has Long COVID has been confusing, frightening, frustrating and, in the end, hopeful. The work being done by so many is truly encouraging, and I salute them all. Thank you.

Warmly,
Simon