2020 has definitely been a roller-coaster.. mostly made up of scary downhill parts and sudden drops. For many folks with pre-existing conditions (myself included) the last few months have been downright scary. The lack of information around what actually constituted a risk meant that many people were in a weird no man’s land where they weren’t actually told to shield but weren’t safe to go out either. For those folks and the thousands of on-the-list shielders the prospect of re-joining the world is a scary one. Those at the highest risk are likely to be stuck in their bubbles for a while longer but some shielders are now facing the prospect of returning to work.
There are a lot of societal challenges, social distancing, face coverings, visors, hand sanitiser, hand washing, disinfecting and altered works spaces. There are also going to be some personal challenges. Many individuals with complex long-term conditions tread a delicate line between ‘successful self-management’ and ‘blue lights and sirens’. The thing that keeps us on the ‘successful self-management’ side of the line is routine. We rely on strict routines, diets, medical interventions and more. We’ve designed our lives to maximize efficiency and we’ve trained ourselves and our bodies to work under well under specific conditions. Lockdown completely obliterated that.
Although utterly necessary to protect us from Covid-19 it had some unfortunate impacts on our coping strategies. Limited support from other people, severely limited access to medical care and complimentary therapies, no access to accessible exercise like swimming, limited access to shops for specialty diets. Lack of support meant an increase in household chores and personal care for many who lost access to their usual support networks. Working out how to successfully self-manage can take years. We all had to re-learn how overnight. Fast forward a few months and many of us have settled into a holding pattern of ‘just about coping’. Bits of the health and social care network have adapted to offer limited services and working from home isn’t quite so scary.
Unfortunately, many of us have let our carefully created routines slip a little. More time in Pyjamas, less strict sleep hygiene and later bed times. A little more takeaway and less structured meal-times. A heck of a lot less walking and more time curled up on the sofa rather than sat on office chairs.
Now that it’s time to head back to work, many are facing a short deadline to get back to out into the world. As we all know, sudden changes in routine have a tendency to end badly. So, here is a little advice on how to minimize the impact of heading back out into society.
The sudden loss of exercise opportunities like swimming and pilates classes hit a lot of people HARD. Despite best efforts with adaptive home exercise many people will have deconditioned. Even if you’re actually fitter coming out of lockdown you will likely have lost some tolerance for specific activities you’ve not done in months. When you head back to the pool or class take it easy. Pace your return to exercise. Your old limits are going to be basically meaningless after such a long break. Many of us are experienced with the old exercise classic of thinking you’re fine when you head home only to wake up the following morning feeling like you’ve been run over by the Pain Train. You’re better off doing not-quite-enough and feeling pretty good afterwards than you are over-doing-it and spending a full week recovering.
Step 1 of the ‘return to exercise’ plan can be as simple as gradually increasing your activity at home. Dance while loading the dishwasher or swap your office chair for a gym ball. Exercise doesn’t always happen in the gym.
Return to work
“Hoping for the best, prepared for the worst, and unsurprised by anything in between.”– Maya Angelou, I Know Why the Caged Bird Sings.
Wise words indeed. Social distancing means a lot of workplaces have undergone a radical re-model. Often at the expense of accessibility. Unfortunately, less shared spaces, more waiting around and a greater distance in between all elements of a workplace will all have an impact on those with limited mobility and stamina. Prepare for the fact that you might have to walk further than normal or hot desk where you usually have a fixed space. You may need to think about how you move all your stuff around with you and how long it’ll take you to get around between areas. Do you need extra time? a wheelie bag? a mobility aid?
Don’t wait till you get back to start making plans, in the self-management game proactive is usually better than reactive!
You can start building up your tolerance for work before you go back. If you usually work strict hours but shielding has made things less strict then consider gradually working back to your actual contract hours. If you usually have to wear specific uniform or live up to a dress code but have spent the last few months in PJs consider trying to wear actual clothes and start practicing your hair styling. If you normally have strict breaks and meal times at work, start replicating that at home. If you normally drive to work but haven’t driven in months then take some practice trips. I’ve you’ve not had to wear a face covering then try it out. If you’ve worked from bed for the last few months start trying out chairs and tables again.
Basically, if it takes time or energy and you haven’t done it since you started shielding, start practicing before you have to do it for real. All the little easy things combine to be remarkably exhausting when you start doing them all in the same day.
The first time I visited a shop after social distancing was introduced it blew my mind in the worst possible way. B&Q is usually well within my comfort zone but the introduction of one-way systems that everyone ignores, floor markings in hazard tape and new directions at the entrances and exits I was thoroughly overwhelmed. I’ve still yet to venture into a supermarket. I ended up using my long cane on the next visit to B&Q simply because the sheer amount of new sensory information was overwhelming. I generally only use my ‘blind stick’ in low light situations or on dazzling full sun.
The majority of people have had months to get used to new social distancing measures but if it’s all new to you don’t be afraid to ask others for help or direction before braving the supermarket. If you think access barriers (like masks blocking peoples faces) or sensory overload are likely to be an issue then work up to big outings. Pick somewhere familiar for your first outing, have a small shopping list and prepare in advance. You don’t want to make it half way through a weekly shop before getting so overwhelmed in the freezer isle you have to leave and try again later. Small successes help build confidence. Big disasters have the opposite effect but magnified by 10.
The Sunflower Lanyard scheme can also help to identify you as potentially vulnerable, staff will know to be patient and offer help if needed. Not everyone is comfortable as labelling themselves but it can be useful at times.
True shielding is a far cry from the modified ‘Social Distancing+’ I’ve been doing. Despite the comparatively lax rules I’d been living with, the first time I walked past a stranger outside I definitely didn’t feel comfortable.
If you’ve been indoors, alone or with your family group for a long time then simply being around other people is likely to be anxiety inducing. Before you attempt the shops or the gym try going for a short trip somewhere open air but more people-y than your own home. Try exercising outside your home, start with antisocial hours like late nights and early mornings then work your way round to busier times. You can visit car-parks for a little practice before actually going into the shops. Interact with trusted friends before you try tackling strangers.
Obviously, those with preexisting conditions that make them vulnerable will need to be extra careful with physical distancing. The thought of having to deal with strangers who don’t understand this is enough to make you break out in a nervous sweat. Try practising stock responses with firm gestures just in case. Scripted responses you can reach for in emotional scenarios can help you manage the situation.
“Please stop there! I’m medically vulnerable and need to you keep your distance” or “Please step back” delivered clearly with a raised palm in the universal signal for ‘stop’ should hopefully get the message across. A “Thank you for your understanding and support” at the end of your interaction will hopefully leave everything on a positive note. Having someone you trust with you can also help to boost confidence and they can act as a buffer between you and general public. Try sticking to quiet areas at less busy times until you’re confident and you’ve got the hang of being outdoors again.
Return To school
For kids & teens who’ve been out of school for months heading back through the doors is going to be a shock, for parents of vulnerable kids it’s likely to be pretty scary. Practising sensible precautions at home is a good confidence builder for everyone involved. Make sure your kids are proficient at physical distancing, hand washing and work on some stock responses like those mentioned above too. If your kids are confident in advocating for and explaining their needs it’ll give everyone involved a confidence boost.
As with the ‘return to work’ advice, be proactive not reactive. Speak to the school and teachers, explain your concerns, make sure your child’s needs are understood. Kids with long-term conditions are just as likely as adults to struggle with deconditioning and loss of stamina for specific tasks so a phased return to school might be needed to avoid a big flare-up or crash. If home-study has been radically different to school study it’s important to start building up tolerances for school style learning. Sitting on uncomfortable chairs, no TV in the background, longer study periods and more regimented schedules, even waking up on time might need practice. School also comes with a lot of social interactions and relationships that might need some preparation too.
Hopefully this has given you a little bit of confidence or helped you plan your return to the world (whenever that happens for you). Some level of social restriction is likely to be part of ‘the new normal’ for a while to come but being prepared in advance is usually a good thing!
If you have any tips of your own or just want to share your experiences shielding please do share in the comments!