Before I begin, a little update on my health, as nearly a year has passed since my last post…
2019 was a bit of blur to me as I spent most of it very unwell, unable to go out, so that days, weeks and months merged. My health deteriorated further mid-year, after eating something bad, to the point where I was briefly bedbound, or hovering above bedbound. It was the lowest I’ve been physically and mentally throughout the whole illness, though at times I felt strangely peaceful as I was too depleted even to worry.
Thankfully, that period gradually passed, and I learned a lot from it. Whilst I’m still very ill, the final part of 2019 thankfully brought progress (after 1.5 years of going backwards or staying the same). This was thanks to a physical therapist who was helping me to release long standing problems with my neck and spine, which they worked out affect my energy, and seem to be a big part of the puzzle for me (obviously this is on pause now). I started to have the energy to do little things that were out of the question before, like blow drying my hair, listening to music and having small outings, which is an incredible feeling after spending so long just in survival mode each day. My health is still very up and down however, with a wrong move sending me back weeks. I’m just coming out of a 4 week crash from a very minor virus, only to find the whole world retreating…
Like many people, I’ve been through a lot of emotions these past few weeks. Realising what the Covid-19 pandemic could mean in terms of prolonging a recovery that has already taken nearly 3 years of my life. The prospect of an increase in what is already a lot of isolation. Worrying about family and friends, about the impact this could have on other countries. But I also see opportunity. For the world to go deeper, to finally pause. For an increase in compassion and connection, as people around the world experience a small version of restriction of freedom many people live with every day.
It has felt very strange seeing the parallels between what those newly diagnosed with ME go through playing out to some extent around the world. The over-optimism/denial stage, where you keep pushing through as if nothing were happening, telling yourself everything is fine. Trying everything you can to cling onto the life you knew and watching pieces slip away one by one. The delivery driver becoming a vital lifeline, and perhaps the only person you see all day. The disappointment of having to cancel plans you were looking forward to; weddings, holidays, birthdays, concerts. Losing careers, livelihoods, relationships. Anger, grieving for all you have lost. Then hopefully, acceptance. Realising how much you do still have. Learning to adapt and live with the constant uncertainty over what will happen and when it will end. Finding stillness in the storm.
It is impossible to avoid the pain and hardship this is going to cause a lot of people. As we weather this, let’s listen to the call to turn inwards. Whilst brave frontline workers put their lives at risk, our job is now to be still, at home, safe. As a society we are so used to pushing and always being busy, rushing from one thing to the next with our phones buzzing, being constantly stimulated. Now is our chance to slow down, to find a new rhythm in life. To sit with the silence, the discomfort, with our thoughts, our fears. To be truly still, perhaps for the first time in our lives. To challenge ourselves to experience freedom in a different way.
This has been a huge lesson for me during recovery, and somewhere I can always delve deeper. Although there is little in my life to keep me rushing around, I can choose to take in the garden whilst I sip my tea, instead of staring at my phone. I can choose to feel my feet on the ground as I wash the dishes, instead of getting lost in my thoughts. It’s also an opportunity improve at pacing; with no temptation whatsoever to overdo it, perhaps this setback could take me forwards in another way.
I am reminded of how quickly our perceptions can change with loss. When I’ve slipped further down into illness, each time I’ve looked back and realised that the level I’d thought was hell wasn’t quite so bad. Right now, I would love to have the mental energy to do more with my days at home, but I know the small things I can do might be huge to someone else.
It has been bittersweet to receive calls from the GP surgery and hospital rushing to offer telephone consultations, when at my worst I was told this was impossible. Seeing workplaces quickly revert to home working, which so many have had to fight for in order to stay in work. Being able to take part for the first time in a local poetry table, over the phone, that I’d always been too unwell to attend. I think overall, this could bring huge gains in inclusivity and accessibility to our society, as what was once casually brushed off as impossible has now become imperative to find a solution.
I feel hopeful that this turbulent time will increase our empathy and connection, even in our isolation. It has been heart-warming to see communities coming together to support vulnerable neighbours, or share resources to keep us entertained. My hope is that people will continue in this way after the chaos stops. Covid-19 won’t be a crisis forever, yet many people will continue to live in restriction and isolation long after everyone else goes back to their normal lives, or their new normal. If you know someone who is unwell, elderly, vulnerable or isolated, don’t wait until the next crisis hits to give them a call. Aside from this, I believe that the greatest thing you can do for someone who has lost something, is to truly appreciate everything you have.
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