When COVID-19 swept into the UK, Laura McKee faced the prospect of facing an invisible monster with chronic illness. Here's how the pandemic changed the way she managed her mental and physical health.
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It'll come as no surprise that taking care of a chronic illness is hard work. My usual week consists of communicating and advocating for myself with various health professionals. I have to keep track of my many medications. I worry about new or developing symptoms, and I often battle brain fog. The pandemic made everything so much harder for my family and me - as it did for so many chronic illness sufferers.
Throughout 2020 and 2021, I found myself becoming more isolated than ever. We wouldn't step foot out of the home unless we absolutely had to. It was a necessary evil, something we had to do to protect ourselves.
Now, in the early weeks of 2022, the pandemic's effect on my family is still being felt. My mental and physical health deteriorated quickly, and it felt like one-step-forward-two-steps-back in terms of the progress I'd made.
And it's funny how much the pandemic is still putting us through the wringer. We're tired of it, frightened of it still, have flashes of hope, have slumps of disappointment. It doesn't give us the luxury of looking at it in black and white. The shades of grey creep in as I count off the positives and negatives that have arisen from this strange, alien time.
So, this is my way of clearing my head and reaching out to anyone who may feel as confused and conflicted as I have. I've been writing about the COVID pandemic; about how it's affected my mental and physical health as I went through it with chronic illness. How it changed the old familiarity of my family life.
I'm sharing this with you, hoping you'll find comfort in relating to my experience. Or, if my experience is different from yours, this may shed light on perspectives outside our usual social bubbles.
Chronic illness and me (pre-pandemic)
I'd ended 2019 on a high. I was coping better with my health than before my chronic migraine and idiopathic intracranial hypertension (IIH) diagnoses. Many of you may be familiar with migraine but not IIH, so I'll do my best to explain.
IIH is a rare condition that doesn't have a known cause. Intracranial hypertension (IH) may be brought on by a stroke, a blood clot, or a tumor. However, "idiopathic" means that the condition arose spontaneously and without an apparent reason.
Put simply, IIH is raised pressure around your brain. In your head, there is a fluid that cushions the brain called cerebrospinal fluid (CSF). When too much fluid builds in your skull, this puts extra pressure on your brain and optic nerves (the nerve at the back of your eye).
Symptoms of IIH can include:
- Constant throbbing headache
- Vision loss from pressure on your optic nerves
- Back, neck, and/or nerve pain
- Dizziness
- Pulsatile tinnitus (PT). While tinnitus may be described as a "ringing" noise in the ears, PT is more of a rhythmic sound that has the same rate as your pulse.
But, despite this diagnosis, 2019 showed some real progress. I was able to do things such as seeing live music - something I'd never thought possible with my pain levels and sensory issues. I'd even invested in a mobility scooter to get out and about more.
So, with 2020 on its way, I was excited about all the possibilities. I wanted to do more, see more, and keep making steady progress. I looked forward to meeting friends and having date nights in the hot tub with Joel, my husband. My blog was building - perhaps I could boost it even more with eBooks. Joel had been made redundant but had found a new job, which he enjoyed.
I never expected a "get out of jail free" card with all my health issues. Doing anything always had repercussions, leaving me in bed for days, but I finally felt on top of it all. The pain, the poor mobility, fatigue, and fluctuating mental health wasn't going to go away, but I could manage it. The idea of seeing my friends, writing, and connecting with Joel more brought me great joy. It made everything worth it.
How my family coped throughout the lockdowns
We got lucky; my husband started his new job 3 weeks before Lockdown One. But when he fell ill after traveling to work for a week, we thought he might have COVID. He stayed in the spare room, and we didn't catch whatever it was he had. But, suddenly, the atmosphere had changed. We felt in real danger.
As a result, we were on high alert before official restrictions from the government came to protect us. Joel worked from home, the boys stopped taking the school bus, and hygiene became a No. 1 priority.
We wouldn't have anyone else in the house, even my paid carer. Joel and the boys took on all my care.
Days later, the official lockdown came into practice. My eldest son was preparing for his General Certificate of Secondary Education (GCSE) exams, while my youngest was busy making friends on his first year of GCSE courses. Joel should have been meeting with his work team. I was worried about how this new way of living would affect them, but I also had no idea what would come.
As the lockdown went on, every choice my family made was based on protecting me. It was a unique and heavy challenge for every family living with vulnerable people. My chronic illness became the decision-maker, down to when, where, and how my family shopped to avoid all social contact.
I'm incredibly grateful that living with chronic illness has given my family the tenacity to manage the change and stress that comes with a fast-moving, dangerous situation. Their ability to cope with the pressure of avoiding infection - for my safety - shows how compassionate and thoughtful they are.
How the pandemic affected my health (without me catching the virus)
As the pandemic went on, it truly impacted how I managed my physical health. My pain flare-ups increased in frequency and intensity due to disruptions in my routine. I stopped doing my basic exercise regime and meditation as I became more isolated.
My body reacted to the stress with a run of infections, including a trapped ulnar nerve. Despite my agony, months passed before I got the steroid injection I needed, as they posed a COVID risk. When I finally had my treatment, the relief was a huge weight lifted off me. However, I still struggled to manage my health as well as I had before.
With the NHS (the UK's healthcare system) diverting resources, my treatment plan was postponed. Though I understood the decision, I was afraid and frustrated for my future.
Then, when I lost a close family member, I was flooded with the same anguish I'd had when first diagnosed with chronic illness. I sank into another long depression.
My anxiety, to put it bluntly, skyrocketed. I felt like I had no control over my body or mind. The thoughts that pushed me before - that motivation - evaporated as the situation continued. I had no inclination to write, which is my go-to link to the outside world and fills me with purpose.
Sure enough, studies on the mental health of people shielding identified "depression," "anxiety," and "mental fatigue" as common symptoms of isolation.
The overwhelming fear of COVID complications triggered an intense fear of living. Not surviving, as we were doing everything we could to ensure that happened, but actually living my life.
In 2021, my doctor advised me to take down a few of the walls I'd built up so high around me. It was "okay" now to see careful friends who followed the guidelines. I needed some outside interaction for the benefit of my mental health. As I was going, my constant vigilance was coming at the heavy cost of how I felt about myself, my life, and all the things I love in my world.
I was cautious, of course, but human connection is what makes me truly happy. As I let my friendships step foot on the island I'd created out of necessity and fear, my motivation and sense of control improved.
Now I'm moving forward with chronic illness in a post-pandemic world
Everyone had a taste of being housebound in 2020 and 2021. Some friends recognized they'd had a glimpse of my everyday life and commented on how well I cope. I doubt this awareness was a country-wide phenomenon, but I hope there will be more kindness and empathy in 2022 and beyond.
Many accommodations housebound people have been asking to become more freely available became the norm during the restrictions. It felt like a luxury to access eat-in restaurants for home delivery, have priority online shopping, meet professionals via zoom appointments, and work from home.
I benefitted most from the developments in telehealth. I've spent years fighting for phone or online appointments with my doctor, who knows a trip for a 10-minute chat can cause a pain flare-up. I hope they make access to telehealth a lasting change, making health care far easier for those of us still stuck at home.
With the world slowly going back to "normal," it seems my friends have moved on more quickly than I have. They've taken the world's reversion to its previous state in their stride, wanting to wipe the memories of being housebound.
But they've been very understanding of my predicament and frequently text me to "check-in." It's super-important for me to see my support network at least somewhat regularly. However, sometimes the cons still outweigh the pros. My friends won't risk a visit unless they - and everyone else in their household - have had a negative COVID test.
It means a great deal that my family still prioritizes my comfort levels when engaging with the outside world. They know I need to feel safe. For example, Joel is still working from home, despite offices opening up. His boss appreciates the precautions he's taken and doesn't pressure him to return to onsite working.
Within weeks of setting my goals for and welcoming in 2022, COVID once again tested my family's resolve. My youngest tested positive. I didn't sleep, worrying about every possibility, but I managed to self-soothe and regulated my anxiety. It wasn't as dire as I'd imagined, and, thankfully, we're all okay.
The takeaway
Living with chronic illness takes time and energy to manage every single day. I don't get a "break," but I do keep up with a tailored routine. My daily rituals made sure I balanced time between work, concentrating on my health, and doing the things I love. When that routine stabilized, I felt much happier and more comfortable.
But unfortunately, life can be unpredictable. We all lost some element of control when COVID-19 swept in. Though I haven't had the virus, it has considerably impacted my health. Especially on my mental health, and I think I can say the same for my friends.
The lingering effects of the pandemic and the lockdowns will affect my kids for a long time. They were worried about me, their school work, and their futures. They're teenagers too - the age when going out, socializing, finding out who they are is so important. Have their crucial developmental stages been snatched away for life? All I can hope is that those stressful, static lockdown days won't have consequences for them further down the line.
When I became depressed, it affected my whole family, no matter how much I tried to hide it. Being isolated for so long really did a number on me. It felt like everything I'd worked so hard for had disappeared into the void. My positive mindset, my coping strategies, the hobbies I loved and relied on... gone. Where there was optimism, grief crept in and took over.
But some good things have come from all this. More access to remote services like online shopping and telehealth, for example. I now have much better access to what I need and even the things I just want.
Touching wood, empathy appears to have increased across the country too. There was so much compassion for those who couldn't leave our houses, and I know my friends glimpsed into my everyday life during the restrictions. All this new understanding gives me hope for a kinder world.
We've had to learn to live beside a severe health threat. I'm still nervous, but I have to see my friends and loved ones for the sake of my sanity. When my youngest child got a positive test result, I thought the bottom would fall out of my world again. It didn't. We were okay. I won't count my chickens yet, but the fact everything was alright has taken away some of the virus' malignant hold it had over me.
If I get the virus, I get it. But I won't let it take away my taste for living again. I won't allow it to warp and twist my mood. I'm ever vigilant still, but I choose to move forward this time.
NPS-ALL-NP-00547 APRIL 2022