The Unexpected Afflictions Of Easing Restrictions

selfie of pippa in bed, no make-up and looking exhausted, wearing pink pyjamas, black noise cancelling headphones and a blue eyemask with the words 'bear with' printed on the front

So here’s the thing. I’m as excited as anybody else to see lockdown restrictions beginning to ease and the world as we once knew it begin to open up again. Believe me, I’m counting down the days until I can gallivant off for new adventures with my best friend or get myself seated back in the theatre as the overture begins and the curtains rise.

All of that in mind, I wouldn’t say that I’m naïve either. I know that the past year has had an impact on my chronic illness. I know that spending so much time alone and indoors means I’ll have somewhat deconditioned and lost stamina for being in public and around others. I know that getting back to where my physical health was at the beginning of 2020, the strongest I’ve been since I was diagnosed in 2014, is going to take time. I know all of these things.

Despite this, however, I honestly think there was a small part of me that assumed that once non-disabled people began to bounce back into their everyday lives, I would somehow magically be able to do the same… my life pre-illness, that is. I almost expected that when restrictions lifted, the chronic health issues I’ve worked so hard to learn to live with would somehow magically lift too.

Last week, I took my first steps back to so-called normality by meeting up outdoors with a friend for an hour. I felt good when I returned home: I’d set a sensible limit for myself, enjoyed a catch-up, and didn’t feel overly fatigued when I retreated to bed to rest and recover. The next morning, however, was a whole other story. I was mentally prepared for some ‘payback’ as a consequence of the day before, but I wasn’t prepared to wake up with the worst pain and post-exertional malaise I’ve had in years… from an activity that would have been completely within my baseline prior to the pandemic.

Sitting here now and thinking about that morning, where it took over an hour even to get sat up in bed, has made me look at my upcoming cautious but lovely plans with friends with a new sense of trepidation. Obviously not because I don’t want to see my favourite humans and get out and about again… but because I have no idea how I’m going to keep on top of things without burning out and making myself seriously ill in the process.

Over the next few months, I’ll need to balance looking after my health and slowly rebuilding stamina, enjoying some desperately needed social time with my friends after a year almost totally alone, and keeping on top of what’s always one of my busiest working periods of the year. And quite frankly, even the thought of it makes me feel overwhelmed. My monthly schedule, which I’m always so mindful to pepper only with plans I can pace and space-out, rather than overcommitting, suddenly seems way beyond what I thought I was capable of.

And no, the issue here is not my mindset. Believe me, one of my biggest downfalls is thinking I’m more invincible than I actually am. I’m remarkably ambitious with how I spend my time for somebody who crumples to a heap on the floor if their bathwater is a bit too hot.

Truthfully, this whole situation reminds me of when my health first declined. I was newly diagnosed with my chronic illness during my time at university, and I had no idea how to balance all the different elements of my life that I’d worked so hard for and were a core part of my identity. The idea of giving things up for the sake of my health made me feel as though I was the one giving up – that I was losing part of myself – and the FOMO that came from watching everyone around me live their best lives whilst I was in bed because it hurt to breathe is something I’ve never wish upon everybody. Back then, during the more difficult days, my completely healthy and not at all problematic solution [/sarcasm] was to isolate myself from everyone – an unhealthy coping mechanism I still have to work very hard to suppress to this day.

This time around, consider this my pledge that things will be different. I’m not going to shy away from the issue, or cut myself off from people, or feel afraid of talking about it. I think we’ve all had our fair share of isolation by now.

If I’m sat here feeling this way, scrolling through social media and seeing everybody’s pub trips, picnics with friends, day trips to new locations, while trying to get my aching bones to carry me to the kitchen for water and feeling rather miserable about it all, I probably won’t be the only one. Not everybody with a long-term condition will be able to relate to this issue, and we do have to talk about privilege here – I recognise that those more severely ill won’t have being out in the world or spending time with others as their end goal – but I think it’s another classic case for the in-betweeners of chronic illness. The ones having some possibility of living the life they choose but experiencing ongoing struggles to do so. The ones trying to say yes whilst their bodies tell them no.

Before I wrap this up, it feels important to emphasise that this post wasn’t written for your pity, or to ask for solutions. Unless otherwise stated, none of my posts about my own illness situation are a call for advice. Instead, this is my way of documenting this point in time, and turning my eyes to the future.

I have no doubt that the next few months in particular are going to be tough, both physically and mentally. Ironically, this might be the toughest part of the whole pandemic for me. That said, there’s still so much to be excited about, so much to look forward to. I’ll learn to adapt, and I’ll begin to find new ways of making it work once more. It’s what we do best, right?

If you can in any way relate to any of these feelings, I hope you know that you’re not in it alone. You can be glad about the roadmap out of lockdown beginning to unfold, and also dread the implications it might have for you. You can look forward to the future whilst being fearful of it at the same time. Your feelings are valid, and your path is your own. We’ve got this.

Where To Next?

4 thoughts on “The Unexpected Afflictions Of Easing Restrictions”

  1. I have been laying down totally alone here on my sofa over 21 years (after a car accident) with hypersomnia,cfs/me,chronic pain etc. so my ‘lockdown¨’will continue forever…so yes…I can relate too !
    Greetings from Finland <3

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  2. Absolutely! I’m a lot older than you (heading towards 60) and I’ve had ME for nearly 20 years now. I’m really worried about how I’ll cope with noise and people, although as a chronic asthmatic with badly damaged lungs I’m still pretty much shielding until I’ve had my second jab. I’ve been lucky enough to manage outdoor swimming throughout the winter, but that’s not the same as meeting friends for a coffee somewhere or going to stay with a friend. I do wonder if I ought to try and have the TV or radio on to try and get used to background noise, but I like the silence. I really hope that your body gets back to your “normal” relatively quickly and that you can start to get back some social life.

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  3. Yes, I can completely relate! I definitely have mixed feelings about the lockdown ending. For the past year, the world came to me on my terms for the first time in my 19 years of illness! Everything was available online, even my book groups, and I didn’t have to miss out on anything. Now, everyone else is getting back to “normal,” but my normal still involves a lot of time at home.

    My issue is slightly different than yours – I didn’t lose stamina from not doing as much, but I AM in far worse shape than at the start of 2020. In March last year, I suffered a serious relapse that I am still working my way out of. I am starting to make progress and finally see some improvements, thanks to a bunch of new treatments, but like you, my stamina is still quite low and old activities I could enjoy most days – like a walk with a friend – will now cause a crash.

    I am also horribly worried about getting the vaccine (though now, after extensive immune testing, I will try it) and having it cause an even worse relapse. So, again, friends are all so excited about being vaccinated and getting out again and inviting us out, and I feel like odd person out.

    Thanks for putting into words what so many of us are struggling with!

    Sue

    Live with ME/CFS

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