Many young people with complex health needs are sadly no stranger to spending long periods of time stuck indoors. However, with the coronavirus pandemic confining more and more of the general population within their homes too, we’re faced with a rather unique social challenge: figuring out how to cope when your support network is also affected.
For a chronically ill young person unable to leave the house, the company of other people and the assistance they provide really can be a lifeline. It isn’t surprising that many such people are now feeling anxious about the potential implications of this pandemic: not only for the wellbeing of individuals affected by the virus, but the knock-on effect this could have on their own care routine.
If the person in question is self-isolating, the simple action of a companion popping in to prepare food or assist with medication just isn’t feasible. Yes, self-isolating is beneficial in that it removes the threat of a vulnerable person falling ill themselves, but what happens when such action means that this same person is also left without the support they need? Where is the middle ground between the risk of being infected, and the risk of their vital support being neglected?
Sadly, it also isn’t surprising that there hasn’t yet been a great deal of attention turned to recognising these issues. Official legislature is quick to promote the action of self-isolating, but there doesn’t yet seem to be many resources out there for dealing with the practicalities for such actions… particularly for the non-elderly disabled population, who the general public are often inclined to forget about.
So, what can people in this situation be proactively doing to support their own health and wellbeing (both physically and mentally) whilst self-isolating? Whilst I don’t have the answers or resources to deal with the underlying issue or address the gap in care which will likely be sorely felt, and no equipment is going to fill the gap left by the absence of companions or support workers, I sought out equipment recommendations that can provide a little much needed help during this challenging time.
The following recommendations were offered by disabled young people themselves:
- Daily living aids such as handy grabbers for reaching distant items and functional aids for getting dressed may be helpful for those with fatigue and pain-related conditions who need to carefully pace themselves.
- Adaptive kitchen equipment such as electric can openers and twister grabs for getting lids off food may make the task of cooking less challenging. Many people will also be sourcing pre-cut and pre-prepared food on their grocery orders.
- Food storage solutions including flasks, spill proof cups, and Tupperware allow food to be prepared in advance and stored next to people whilst the rest, marginally taking away the need for multiple trips to and from the kitchen.
- In a similar vein, adjustable tables may also allow more tasks to be completed from a person’s bed or chair, whilst still being lightweight and mobile enough to be moved around as necessary.
- Personal hygiene products such as no-rinse shampoo caps and bespoke wet wipes may offer a temporary solution for some of those who require assistance with washing or bathing. Also keep some hand sanitiser close by to save trips to the bathroom.
- Larger, multi-day pill dispensers (when prepared in advance) may be helpful for ensuring people retain control over the medication routine and reduce the risk of tablets being forgotten. There are also various pill reminder apps for smartphone devices that can give people a friendly nudge when the time has come to take their medication.
As well as the above recommendations, a small powerchair suitable for indoor use can be really useful, as can a riser recliner armchair that will help you into and out of a chair if you are suffering from reduced core or upper body strength.
And the final resource I wanted to highlight at this time relates to one that many of us already have at our disposal: social media. Yes, platforms such as Facebook and Twitter can also expose us to excessive scaremongering and ridiculously unhelpful posts from the Karens of local neighbourhood groups, but they also provide an accessible way of sharing our thoughts and communicating with others, both of which are incredibly important for our own mental wellbeing. I do believe, generally speaking, that this is one area where the younger disabled population are significantly advantaged over elderly people. For those with no experience of social media or technology, how are they to communicate?
Many disabled people of all ages, however, have sadly felt as though they’ve had to step back from social media for the foreseeable future, simply due to the nature of the reporting of the pandemic and people’s inflammatory responses to it. However, if you too are struggling but feel you would be isolated, you should know that there’s no shame in ‘muting’ particular words, phrases, and hashtags, and hiding these from your feed. Many people are continuing business as usual, creating content and sharing thoughts on completely unrelated topics, so if you feel it would be helpful to maintain this form of contact, I wholeheartedly encourage you to utilise this function.
We’re facing uncertain times, and as a chronically ill young person myself, I know just how frustrating it is to feel our voices aren’t being heard. There’s a desperate need for further action at a regional and national level, but in the meantime, please do take care of yourself. Reach out and check in with others, keep communicating, and take any steps you need to prioritise your own wellbeing. Together, we’ll get through this.
- The Long Covid Enigma – Lessons Learned From ME/CFS - May 7, 2021
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- The End Of Lockdown, But Not The End Of Loneliness - March 19, 2021