I did a little chat to video for my healthy, mostly able-bodied friends because crips like me are old hands at handling isolation so we can share some tips that might help. [Hmmm, Tips from Crips, maybe that should’ve been the title? Crip Tips?] Aaaanyway, then my friends all asked to share it so here it is in written form because the audio was not always that clear…
Admittedly it’s initially been hard to deal with the healthy folk not coping with their, what is to us, very brief and temporary isolation with their mostly functional bodies. We’ve continued at the periphery being referred to as ‘other’ through the “only” the vulnerable will die phase, then people buying everything leaving the vulnerable without, then people not staying at home to protect the vulnerable and finally only doing so when it seemed to be important to them personally and now they are at home and we’re finally being risked less – we’re hearing a lot of complaining about how awful it is being stuck at home temporarily whilst able-bodied.
And I’ve shared about this for insight because healthy people can look at their current experience and try to imagine what that’s like as a forever situation because that could mean more awareness and care for people like us out on the periphery, but what I don’t want is for people to feel shamed into hiding their frustrations because ‘so-and-so has it worse’, that’s not helpful at all. Your frustrations are valid, even though we’re jealous of you because even in lockdown you are capable of all the things we would like to do at home but either struggle to do at all or simply can’t.
But we do have a lot of experience dealing with isolation so…
First of all – yes, being stuck at home sucks. The early stages are particularly potent as we go from living a faster paced life to what feels like a standstill. Over time you’ll settle into it more but let’s see if we, the long isolated chronically ill lot, can help with that transition at all.
Not all of our experiences are relevant to you. When we first found ourselves where you are we had lost our identity because we could no longer work (amongst all the other things we could no longer do) but what we do for a living is key because that is how we’ve been raised to define ourselves. The standard “and what do you do?” question that we get all the time because the assumption is that everyone does something, and we do, but what we do doesn’t ‘count’, as it were. Even after no longer being able to train for a career, work to earn an income, do the things we used to do and go out to see friends, go on excursions, to events etc we still don’t actually do “nothing”. Our time is filled with pain and symptoms and finding ways to cope with that on top of the frustrations of not being able to do stuff. So we will spend hours trying to build our body up to trying to get some food, trying to have a shower etc.
This is obviously not how your time is being filled. You are mostly able-bodied, used to being on the go and suddenly find yourself stuck indoors. You’re most likely really frustrated and because you can’t go out you and we’re all only human, you are probably wanting to do all the things that involve going out.
So here’s the trick, and when we (the chronically ill) get told this initially it sounds really offensive until we understand it better but as you don’t have the health issues getting in the way it might make more sense to you earlier on…the trick is… “acceptance”. <shudder>
Yes it sucks. We haaaate this one! But the key is that this is not about ‘giving in’, not at all, it’s simply about acknowledging the parameters of the situation because once we’ve done that we stop bashing our heads against them and are freed up to think about what we can do within those, admittedly sucky, crappy, horrid parameters.
So…seeing as you’re stuck indoors, what is there indoors that you could do?
Yes, all the cleaning and DIY etc
Who are you? What do you enjoy? What have you been putting off or not getting round to that you’d like to do or try? Not work related stuff. You related stuff.
Who were you before the adulting?
Art? Books? Writing?
This is your time. To be you. Indulge in yourself.
We try to do this but it’s hard because we mostly still struggle to do any of this stuff. Managing to get to the toilet has to come before doing something for us. And doing something for us always renders us in more pain/with more symptoms etc so it ends up being a rare thing indeed, but you have this opportunity here because you’re not restricted like we are. I’m not saying ‘ooh look we’re worse off than you’, what I’m trying to say is… you have the opportunity to really run with this in ways that we can’t. This could be pretty awesome!
At first it kinda feels like you’re at school and have been told it’s ‘indoor play’, ugh!
The trick is to re-frame it – it’s not so much like indoor play – as getting to go home early! You can play, it’s guilt-free time to just ‘be’. And you can do it in your house with all your stuff. So be you.
No-one else will see… your drawing, your poetry, your writing, your new attempts at recipes with the random ingredients you’re having to work with! No-one will see your home-made videos (unless you choose to share any of these afterwards of course). No-one will see your fort (oh yes, adults can totally make forts too). The decision is all yours.
One key tool that we use is not to look too far ahead into the future. So rather than looking at the potential weeks at home stretching out ahead of you the trick is to think of a thing you’d like to do and focus on that instead. We rarely know what day of the week it is because unless we have a doctors appointment they are basically the same Groundhog Day over and over. If we acknowledged the days going by without us we’d be a forlorn mess. All those people living their lives when we no longer can. In this instance though you’re not getting left behind because everyone is in the same boat. Or most people anyway. Most people are having to isolate and not do what they usually would be doing. So you have an opportunity to play without getting left behind.
Re-focusing helps with worries about the future as well. Income is a concern for many. We understand this concern, it is ever present in our lives and unless we could step back from that we would never cope. We don’t just block it out, what we do is what we can for now – get that set in place. Then what is out of our hands is out of our hands. Worrying about it would send us doolally with the stress about the resulting impacts that would bring. So once we know we’ve done all we can for now, we step away from that as well and consciously focus on something else. For our own sanity. This is crucial. Do what we can then shift focus.
Stopping to notice the little things. People don’t usually do this unless they’re are on holiday. It takes some time to wind down and slow down enough to do this. Work on it. Have a cup of tea, look out of the window, notice the sounds, the feels, acknowledge anything that you like. Let it make you smile. These little things pass us by usually but when we’re isolated they become a quality part of our lives.
Keep in contact with others. You’re used to seeing people every day and suddenly it’s not happening. The silence can be deafening. Check in with friends. Send messages, silly pics, make video calls, have a laugh. Contact friends who live alone or are chronically ill, the former are currently extra isolated and the latter are always isolated and are suffering from years of this. You will make their day just by saying hi. Trust me!
Keep some semblance of routine though so that your body doesn’t rebel too much. Sitting around in jammies all day is okay for the first couple of days but then we really need a focus or things can easily slide. If they do that you can find yourself without a coherent sleep cycle or decent nutrition and if you do get ill your body may not be so ready to deal with it. So keep clean and get dressed, have mealtimes still, look after your body and be you.
So to re-cap, some tools we use:
- Accept the parameters (they’re shit, we don’t get to choose them)
- Re-frame it as an opportunity
- Don’t look to far into the future: prepare as much as you can for eventualities and then re-focus
- Get in touch with who you are on the inside, regardless of job, positions in society etc
- Look for possibilities within those parameters that might make you smile
- Take time to pause and notice the little things
- Keep in contact with others (we have the technology)!
- Keep a routine so that your body has enough sleep, nutrition, exercise etc
So…what do you feeeel like doing? What do you have in the house? Are you gonna put a tent up in the garden and listen to the birds? Are you gonna do some drawing in secret just for your heart’s content? Do you feel in need of putting on some music and having a really good dance-like-no-one’s-watching moment? Awesome! Do it! Not sure what your focus will be yet? No worries, stick the kettle on and have a think. That’s part of the process. Rediscover who you are on the inside and allow them out to play. You might find one thing you want to do or you might find lots of little things along the way. You might prefer to make gifts for other people to make them smile. It’s all good. Let your inner you take you on an adventure.