I hope you’re all doing as well as can be expected – especially those out there who’re frontline workers or folx in lockdown. It can be incredibly stressful, and I’ve began go feel the effects of 10 months shielding from the rest of society, and enduring 3 national lockdowns. Being disabled creates a divide from your local community due to inaccessible spaces and the lack of supportive infrastructure; so I oftentimes find my social life has revolved around my chronic illness pals online. However this isn’t just because of the barriers we face due to ableism and the nature of our conditions, but because there is an element of understanding and empathy constructed and based in lived experience.
Recently, as I’m sure many other people have also experienced (disabled or otherwise), I have seen my mental health decline. Even though my techniques are resilience during extended periods of social isolation with my health, this has been particularly difficult. Not having found the social adjustment all too drastic isn’t an achievement, or something to celebrate – however, I’m starting to struggle as a vulnerable individual.
So over the past week I have had to take somewhat of a step back, but have also withdrawn inadvertently due to my lack of mental presence. So, having acknowledged this I knew it was a necessity to remind myself of the need to consciously focus my attention back to the basics.
I think it’s incredibly easy to slip from our usual footing in self care when things get rough and turbulent, which is understandable. Our brains can only absorb and process so much before it starts unconsciously failing to remind us to take care of ourselves. Therefore it’s important to remind ourselves of the art of self forgiveness, and not to punish ourselves for being human and going through a difficult patch, resulting in these distractions and set backs.
It’s not always feasible to maintain the same self care routine because baselines change, our access to care can be unreliable, or we have symptom flares. This doesn’t mean you’ve failed, but it does mean you have to prioritise the most vital and important elements of self care to benefit you overall wellbeing. But being disabled means having to compromise a lot and get creative with how we adapt to challenges we’re faced with.
I wish to remind my audience that even though I’m disabled, everyone’s needs and abilities are different and I’m speaking from my perspective as a someone with dyautonomia, a CFS/ME, and EDS.
Personal care and sleep
Attending to personal care tasks, such as bathing, brushing teeth, brushing hair, or wearing clean clothes is always preferable for everyone, especially when it comes to prioritising physical comfort. This can be tricky as there are many disabled folx who struggle to attend to these taks, or are physically unable to. However I’ve found, as someone with my medical conditions, the following to help:
• Sometimes the heat and the physical strain of full body showers can be too much for those of us with limited spoons and CFS/ME, therefore using a flannel with warm soapy water at the sink, using a shower wheelchair/bottomless shower stool, allows us to wash the main areas to maintain intimate hygeine and feel fresher, without using up our spoons.
• This christmas I asked for a towelling robe to use for after the shower and bath, because getting dried with my pots was a nightmare. It flares after showers due to the exertion and humidity, therefore a bath robe, and a hair towel which I can wear as soon as I exit the water and can focus my attention on symptom management is helps considerably.
• Don’t be afraid to take the plunge and ask social services, or your GP for a referral to a community occupational therapist who can provide you with a needs assessment and help source appropriate medical aids. They aren’t always pretty but we can worry about that later. If you have the money available to invest in higher quality aids of course I would always recommend getting the best possible product within reason to help support your health and quality of life, but at the end of the day, having slightly unsightly mobility aids is way better than our symptoms being more out of hand. It also sets a mental precedent with ourselves that we need to honour our needs and worth before anything else. grab rails, post shower naps, bringing supports into the bathroom with you if you’re prone to dislocations or subluxations, Using a shower mirror and back sponge to ensure you aren’t hyper extending due to a lack of proprioception.
• Electric toothbrush as the repetitive action required for a manual toothbrush can strain my shoulders and trigger the nerve pain into my trapezoids. Preferably a model which alerts you if you’re pressing down to hard, as sometimes when my joints are particularly hypermobile, I find I tend to apply too much pressure to try and stabilise the joint in movement.
• Naps never leave me feeling refreshed or energised, but they are self preserving as I would feel worse had I not taken the initiative and listenened to my body or identified potential patterns which need attending to with rest and recuperation.
When discussing self care you often see the glamourised version or the discorse surrounding the need to refocus our perception of self care back to the basics and see that it isn’t a luxury. The problem with this is that everyone is different, and what works for some doesn’t work for others. For example, I like taking baths to help soothe my muscles and I enjoy using bath products which aren’t necessarily essential but do help make the experience more relaxing and enjoyable, which can be emotionally beneficial. I also really enjoy painting my nails and engaging with a skincare routine to help keep my skin in healthy condition, as it is prone to problems if I don’t do so – but also because I enjoy the process. I know this isn’t for everyone, but again I see it as a priority for me because it helps me feel comfortable and happier in myself. I have found decanting product in to wider, easily opened and sealed containers to be a good alternative to using original packaging which is difficult to open, grip, or manipulate with fine motor skills.
Promoting my independence and engaging with activity independently means a lot to me, and I know this is pretty much the same across the board for disabled folx as we lose our independence and autonomy in other ways because of our health and care needs. However these additional practices are not always manageable due to energy levels, and sometimes this means asking for help to fulfill these tasks.
Relaxation and reframing productivity
As I get older I find I need more time to myself to unwind and relax, otherwise I feel like I’m figuratively climbing the walls. There is a lot of societal pressure be productive, even though it’s unable to keep up with the standards set by society without reaching burn out at some point. But as disabled folx we can’t keep up and yet we feel we have to meet these expectations or exceed them to over compensate due to the belief we have to “make up for” the fact we’re disabled. However this is internalised ableism talking, we don’t have to make up for anything we enough as we are, and our worth isn’t dependent on how stereotypically productive we are. Besides, productivity looks different for everyone – and in my opinion if you’re looking after yourself, this is a form of productivity which is worthy of acknowledgement and self praise just as much as the additional stuff. So if you want to watch netflix to unwind, it’s just as productive as unwinding with some yoga or taking a walk if the results are as effective, but we have to do what our energy levels dictate as opposed to what we perceive is expected of us.
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