Living with chronic illness is a daily battle. it's a maze of balancing complex, debilitating symptoms, whilst searching for a quality of life. This week we decided to make life a little bit easier by rounding up some of the products and items that have positively impacted our lives. Navigating daily tasks and activities as a spoonie, it's important not to push yourself too hard and prioritise energy management. Here are the products that have helped us adapt, flourish and manage our symptoms ...
Originally I bought an adjustable bed with the help of my parents & favourite aunty as I was struggling on dialysis & my date for Transplant loomed. As exciting as that was, the reality was I would be sliced open and stapled shut after Transplant. I knew getting assistance in and out of bed was not going to be possible at all hours of the night. having an adjustable bed frame and some squash allows allowed me to recover faster as I was able to really protect that site. I only wish I had gotten it sooner when I was in dialysis. I can say with confidence, that I still use these amazing features every day. Investing in an adjustable bed will provide a great tool for recovery. After all hospital beds all use adjustable bed frames for a reason ...now imagine that but with a comfy mattress and squash-mellows - it's comfort heaven!
One of the things I’ve recently discovered and absolutely love is an app called Forest. Now, this isn’t necessarily an exclusive spoonie recommendation, but I still want to introduce you to it. Basically, it forces you to stay off your phone for the time you’ve set, and if you leave the app (you can still lock your screen though and receive calls) the plant you’re growing dies. I just really like it because it stops me from letting my boredom or my anxiety make me scroll through social media while watching a movie or doodling. I also set it when I’m eating, so I really have to just be present with my food. Plus, you get rewards for reaching milestones and there are many different plant species you can grow in your forest, which is I think is pretty cute.
search "Forest App" in-app store
This month I have been loving my shower and kitchen stool. For years I have dreaded the payback of washing my hair or having a shower on a flare day. This month I had the longest shower for years, thanks to being able to rest and manage my symptoms better. I can happily experiment with hair masks and take more time on my self-care, which has been a massive mental health boost. Making meals has also become a lot easier as I can sit down when making myself a meal. Normally my brother or other family members prepare meals for me and recently this has happened fewer. This has made a massive difference to my daily independence and confidence as a spoonie.
So, I would like to recommend a "nap pillow" for travelling, so your head is always comfortable. I just bought it, so I can tell yet the disadvantages... but I love the style, the many designs, the Made-In-France (I like to go for Made-In-Europe when possible), how comfortable it is when I lie on it, and how small and light it is.
Here is mine: