2020 through the lens of disability…

This year I’ve been mostly at home, maybe that’s been your experience too.  This isn’t new for me as since 2015 I’ve been living with chronic illness. The essence of 2020 has been our shared experience of being forced by circumstances beyond our control to stay in, when all you really want to do is go out. As the stark reality of having an altered Christmas becomes ever more apparent you may be longing for those heady days of living your life just the way you want to.  I remember when I could play tennis with friends, go to work, go for a long walk in the forest, lose myself in the beauty of nature, or just aimlessly mooch around.  I could almost feel my heartbreak when it dawned on me that I was unlikely to do any of those things ever again.  I was in denial for such a long time even though I couldn’t walk or talk, never mind go back to work.  Eventually, I learned to love the memories and be grateful for having those experiences to look back on.  Before you barf/balk let me tell you I also miss those times with heartache and sorrow. I’m not sitting here pontificating that you shouldn’t feel upset, low, scared, lonely….or try to make you guilty for not having any of those feelings.

I was talking to a friend last week and I was lamenting about how even after 5 long years of living with a disability I still wasn’t used to having severe flare-ups (in bed for days, barely able to function).  She replied that it wasn’t really about “getting used to” disability.  My friend was born with a disability and has a lifetime of experience of being frustrated and annoyed when she’s can’t do the things others take for granted.

I believe there is balm in our collective understanding of how lives are changed.  Long before Covid arrived I had given up trying to explain how altered my life now was.  My (mostly) housebound situation was completely alien to many others and I ended up telling people as much as I thought they could cope with.  To tell the truth I think some folks found my stories to be unbelievable and I was exhausted trying to validate my own experience.  In my frustration, I allow myself some scepticism which I think is healthy, right?  For example, consider the amazing endurance athletes who can manage feats of derring-do.  If they want a real challenge I’d set them a fortnight alone in bed.  That might initially feel like a blessed relief after their heroics but trust me, the shine would soon wear off.

Don’t get me wrong, my life isn’t all bad.  The past 5 years have taught me some valuable life lessons.  I know exactly what time to tune in to Bargain Hunt DON’T JUDGE ME (It’s 12.15)  Over the years I’ve witnessed various telly spectacles such as elections, The Olympics, Brexit referendum, US elections, but they’ve come and gone.  Unlike the seemingly permanent COVID news. I do like to stay informed but only to a point.  There is other news out there, life is going on all around us.  Like this, for example which refers to a change in advice for rehabilitation from Long Covid.  It was particularly interesting as it makes no reference to the fact that the common symptoms of Long Covid are exactly the same as those with people who have chronic fatigue.  In short the health advice was to do gentle, focused exercise in order to help alleviate fatigue, but this is now not recommended.  Over the years I’ve heard people from the chronic fatigue community complain that this strategy was harmful.  I sit on the fence with this, that’s if I can get up on the fence in the first place.  Activity is a good thing, I can’t make any reference to exercise myself.  Although I have to say that advising someone with chronic fatigue to exercise is like telling someone who is burning to get better by putting their hand in the fire.

Our collective experience of 2020 echoes life with limitations, be it a disability or otherwise.  Your life is turned upside down, you get some relief from the pressure and think it’s all over, only for it to come back with a vengeance.   So if you want my advice I’d say allow yourself to get frustrated but remember to care for yourself.  Even if that means lying under the quilt and having a Big Cry. I see lists of useful phone numbers being shared on social media, people are sharing that they are stressed, upset, anxious, lonely.  I’m living proof that it’s possible to live through difficult times.  I used to tell myself that I couldn’t go around it, I had to go through it.  But I needed support to learn compassion and understand what it means to feel vulnerable, which isn’t the same as being weak.  Please don’t suffer in silence, reach out and get the help you need.  Contact your GP if you need support, the doors may be closed but they are busy working to support the community.

I’d like to close on a personal note and say thanks to you dear reader, Brian and all at Slugger O’Toole and wish you all a very happy Christmas and a better 2021!

Photo by akashskyprince is licensed under CC BY-NC-SA