Lockdown seems unusual and difficult for most of us and we’re used to being out and about.
But for many disabled people, spending most of their time at home is how their lives have been for a long time.
Today for My Quarantine Routine, we’re with Jason Reed, 40, from Sittingbourne, Kent.
Jason has my myalgic encephalomyelitis (ME), which is also known as chronic fatigue syndrome (CFS). Having lived with the condition for 30 years, he has been housebound for most of his life.
He says that the outbreak of coronavirus could help disabled people in some ways as things are more accessible remotely and people understand more about what it is like to live in isolation all the time.
During this time, Jason has launched a new podcast called So I Start A Revolution From My Bed about living in isolation and being housebound.
This is how Jason spend Monday 13 April.
Ok, fair enough, time to stir from my broken slumber. Let’s get this out the way quickly, I’ve suffered with M.E for over thirty years.
If I could have a Hammer Horror soundtrack and sound effects to my awakening it would sufficiently indicate the turbulence of ‘waking up’.
After a hard night’s sleep, the rest must now begin. Unlike our ‘normal life’ where I’d be alone for this part of the day, my wonderful partner Sarah is already downstairs and working from home, trying to manage her castles as best as she can. Yes, she actually manages castles.
But for the next couple of hours I have to keep focus and remind myself that I have to take the world on by my own terms – pacing is crucial.
Let’s get that hot water bottle on my neck, try to zone-out in front of Netflix and watch something with a cold flannel over my eyes, which always proves an interesting experience. I know I’ll end up putting on relaxation music or an online aquarium.
My phone rings, I make appropriate excuses and try to impart some professionalism, something like, ‘I’m in meetings, sorry I can’t talk’ – but I reluctantly hold my hands up that it’s around now that I’m most likely in my most incoherent state due to the illness, and quite possibly dribbling.
I tend to get my best rest around this part of the day.
I still try to keep my focus. Must… rest! When the world rushes on maintaining your own sense of pace is key. I have to keep reminding myself.
Here we go, breakfast. Let’s get some fuel into me all the while my body creaks like the Tinman from the Wizard of Oz.
Checking my emails and all of my social media accounts. I’m privileged to be the co-executive director of LEAP UK, a multiagency of law enforcement figures who seek drug policy reforms to create health-based models over punitive ones.
My hard-working colleagues have been in action so I now take up the mantle. I’ll be spending a few hours working on projects and media work.
It also serves as a humble reminder to just how many vulnerable people are suffering – those who are homeless, those who suffer with addiction, and those who are victims of domestic abuse, so many people need consideration at this time.
This is where I have to try and become ‘normal’ and hope my body and mind can create a suitable facade of being a functioning human person.
I embark on pre-production work for the two-time British Podcast Award winning podcast called Stop and Search – and the irony is still not lost on me: I can barely string a sentence together for 90% of my day, I’ve somehow won awards for talking.
We had to cancel live events across London due to the pandemic. I was supposed to be hosting my friend Dr Suzi Gage in Tottenham Court Road’s Waterstones to speak about her fantastic book Say Why to Drugs, so instead we coordinate setting up a remote recording and possibly an online event.
Dinner time! I do the cooking in this house when health permits. Today we have vegetarian toad in the hole and gravy from scratch.
We have a bit of a walk. I’m lucky to live in Kent, so the countryside is never too far away.
My mind turns to friends who live in cities and have no gardens. We see a big bird but neither of us are proficient enough to know what on earth it was.
Back at my desk I work on my new project which has been created for the quarantine period. It’s called So I Start A Revolution From My Bed and it’s a podcast about isolation, being housebound, and what coping mechanisms we can use.
It’s proving to be a fun, insightful, and sometimes wonderfully silly conversation, just the right mix of nonsense and meaningful.
On the show we talk about: Favourite comfort films and boxsets, also things like favourite smells to go into your own scented candle. Childhood toys and programme memories, and much more.
My first episode was released with friend and author Johann Hari, who still maintains the phasing out of the McPizza is the greatest crisis since World War II.
I now record with the wonderful comedian and another good friend Tiernan Douieb, but I learn that he puts a fried egg on his porridge so I have to terminate the recording immediately.
The podcast is produced to support The Calm Zone, a mental health charity with services crucial for this strange time.
I’ve still not forgiven Tiernan for his crimes against oats, but we wrap up our remote recording and I sort the files out.
I also check for online shopping delivery slots, but still none available and I begin to realise that a physical trip will almost certainly have to happen.
I put my wonderful 16-week pregnant partner to bed. We have a quiet moment of, ‘What on earth are we doing? We’re not grown up enough to be parents’. Trying to sort baby things out during lockdown is proving a challenge.
Time to practice what I preach. Let’s get the decks clear and make relaxation an event. I’m always reminding those around me to not squander relaxation. But I do catch myself staring at the wall and thinking.
The lockdown period has proved interesting for all of us, and I’ve noticed how this is also true for the disabled community, especially those who are familiar with isolation.
The current climate has become a bit of an equaliser. Being more honest than I like to be, I have to admit that I’m not able to compete with the world on its normal fast-paced terms.
Trying to work on projects, or book public figures and higher profile guests for my podcasts, and trying to keep my head above water often proves hard work and fraught with competitiveness due to the value of time, but at the moment many people have time on their hands, enabling me, and others in similar health circumstances, to have more of an equal footing.
When the world speeds back up and returns to some degree of normality, I once more expect to fall slightly more by the wayside due to not being able to compete with ‘business as usual’.
I begin to realise that I’ve felt some pressure to try and maximise these windows of opportunity which I’m rarely afforded. Whatever the new normal may look like, we need to reevaluate how to be more inclusive towards disabled people and those who experience long-term isolation.
Shower and comfy clothes time! My shower proved equal parts hardwork and therapeutic. Now to set up my relaxation aids, all the tealight holders and pretty lights!
Pain relief taken, the hot water bottle is planted on the back of my neck, feet up, let’s pick the appropriate thing to watch.
I’ve inevitably found myself in a YouTube blackhole and I’ve searched for the Pina Colada song and bask in it. I pretty much have a horrendous allergy to alcohol, so I should dutifully dislike the song, but what a tune!
Pain and what I describe as literal exhaustion took me over. I lose a few hours down the back of the sofa and I awake with a start.
I quickly have to line my stomach to get ready for the next round of painkillers in the morning, then off to bed to wrestle the duvet. Lockdown? What lockdown!
If you want to get involved with My Quarantine Routine, email [email protected].
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