Something I often speak about in reference to my chronic illness journey is the fact I’m an ‘in-betweener’. I’m frequently caught between being ‘well enough’ to look after myself, but still needing support to live the life I choose. And one of the areas where I think this is easiest to see is in my living situation.
After I graduated from university and moved back in with my family, I knew that I had a choice. I could continue living at home, or I could take the plunge and move into a place of my own. And yes, I know first-hand that having a choice in this situation is in itself a privilege. It’ll never be taken for granted.
Staying at home would mean there was assistance from my parents on hand for when I needed it. It would massively reduce the costs of living that would come out of my wages, which wouldn’t be ideal given the impact of my illness on my ability to work. However, moving into my own flat would give me complete autonomy and independence. I could live my life on my own terms as another person of my age might, and not being around other people (the noises of everyday life and the exertion of talking on difficult symptom days) would actually mean I’d be able to better manage my condition.
I knew in my gut that I wanted to live independently, and ever since I moved into my flat in 2018, I knew it was the right decision for me. However, I also knew right from the beginning that the benefits of having my own space would come with numerous drawbacks…
- Ensuring I’m well enough to look after myself and work (even from home, in a flexible and self-employed capacity) means that I have less energy to spend on socialising, getting out of the house, and doing the things I love. My priority always has to be doing what I need to do, and any energy I have left over to spend how I choose it is a bonus rather than a given.
- Being able to pay my own bills and expenses is something I’m really proud of, especially as I’ve never been ‘disabled enough’, if you will, to qualify for financial support. However, covering monthly expenses as well as the additional costs of disability, such as food deliveries and taxis to medical appointments, can at times be frustrating and worrying.
- One of the biggest challenges I personally face is the exertion required for cooking and cleaning. Even on a good day, sitting and wiping down the kitchen surfaces can cause my symptoms to go wild. I keep on top of things as best as I can, but I’ve really had to relax my expectations of how clean and tidy my living space should be… something I’ve found particularly challenging over the past few years.
Whilst these problems are rooted in much-deeper issues, along the way I’ve been learning to utilise any and every little thing that might help me to manage living independently safely and, for the most part, successfully. With that in mind, here are a few of my top picks from CareCo’s Aids and Equipment:
- Shower Stool. My shower stool was the first mobility aid I ever purchased. It helps remove the exertion of having to stand whilst showering, and significantly reduces the likelihood of me feeling lightheaded or blacking out from orthostatic intolerance. Always a bonus, hey?
- Adjustable Bed. Adjustable beds are a big purchase to make, but I’ve certainly had value for money out of mine. Not only does being able to elevate my head and feet help me deal with specific symptoms which vary day by day, but being able to prop myself up means I can eat and work from bed if I need to. It gives me a back-up option for when life needs to keep moving forward, but I need to stay where I am.
- Pill Organiser. Generally speaking, I’m quite on top of my medication routine. During the morning and throughout the day I rarely encounter issues, but my brain turns to absolute mush in the evening. I’ll take my evening medication around 7.30pm, and within the space of 5-10 minutes I’ll have absolutely no recollection of whether or not I actually took it. Without other people around me to provide necessary witness statements on these occasions, pill organisers help me to visually work out whether or not I took the pesky tablets on any given day.
- Wheat Warmer and Joint Supports. Pain management is such an individual thing and I consider myself very lucky that pain is no longer one of my primary symptoms. However, on the days it inevitably flares, having easy access to pain relief measures such as Wheat Warmers, hot water bottles and joint supports can help me to get by. Keeping these to easily hand in a bedside drawer gives you the peace of mind of knowing they’re there and waiting for when you need them, even if there’s nobody else around.
- Cleaning Wipes. Cooking and cleaning are the two areas of independent living I personally find most challenging – even when I can physically manage the chores, the post-exertional malaise can wipe me out for days afterwards and leave me feeling terrible. I really have to manage my expectations and just accept that I can’t do as much as I’d like to, but one thing I do find helpful is easily accessible cleaning wipes. You can just whip them out and give things a quick once over as and when you feel up to it, rather than embarking on an elaborate Mrs Hinch-esque cleaning routine.
If you’re currently debating whether living independently would work for you, my best advice would be to think in advance about the things you struggle with. Write them all down, and then brainstorm whether there are any potential ways to make them easier – aids and equipment, support services, assistance from family and friends… these are all things that I personally utilise, and I hope you know there’s no shame whatsoever in asking for help when you need it.
The important thing to remember when it comes to chronic illness and independent living is that there’s no right or wrong choice. Every person’s circumstances are so unique, and we all have different personal challenges and priorities. There’s nothing to be gained from trying to compare one disabled person’s experience to another’s.
I don’t mind telling you that it’s hard sometimes, and goodness knows I don’t always get it right. It’s still a huge learning curve, but I know that moving into my flat was one of the best decisions I ever made. I do take pride in managing on my own, but not by any stretch does that mean that not living independently is a failure. Not at all.
It’s all about weighing up what’s best for you, but for anybody considering taking these steps themselves, I hope hearing my own experiences is helpful. You can also find more tips that I’ve picked up on over the years in this blog post from relatively early on in my independent living journey!
- How I Adapt My Non-Adaptive Bathroom - August 10, 2021
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- The Long Covid Enigma – Lessons Learned From ME/CFS - May 7, 2021