My Scleroderma ‘Life Hacks’
This week my husband Max surprised me with a day trip to Akaroa — he must have read my last column! Outings such as this can be big undertakings for the chronically unwell. As I began to plan what was needed to be taken, I realized that there are many ideas, developed over the past couple of years, that make my ordinary life with scleroderma “run well.” Life hacks, to use the modern terminology. So without further ado, let me share a few of them with you.
- I always keep a small packed bag handy, since emergency visits to the ER can be regular. The first time this happened and we weren’t prepared, Max had to bring in a bag for me. It contained 10 pairs of socks, five T-shirts that I’m pretty sure I had last worn when I was 16 years old, and some weird scuzzy toiletries in a bag that had something growing in the bottom of it. Oh yes, and he had also popped in a humongous bag of kiwi. He is such a thoughtful husband, and tries his best for me. Sometimes it’s difficult for our loved ones to get minor details exactly right! So, my pre-packed bag contains nighties, always the short-sleeved ones so my arms are accessible for lines to be put in. Among the usual changes of underwear, etc., are non-slip socks (just the three pairs!), baby wipes (so handy), a plastic bag for rubbish, a spare phone charger, and a blanket. I’ve always found having my own blanket in a hospital is comforting, and it’s handy for when you have to be moved in a wheelchair to keep covered and warm. Oh, and of course my bag also contains a NICE toiletries bag complete with small bottles of shampoo and body wash, toothpaste, and a fresh shiny toothbrush.
- I don’t go anywhere without a water bottle, necessary to take medications, and, of course, eating food is impossible for me without water because of my compromised esophagus. Also gloves, scarves, and a spare thermal. I keep sets of them everywhere no matter what the season: in the car, my handbag, in stashes at various friends’ and relatives’ houses. Raynaud’s sufferers become very cold easily, and if I don’t keep warm I can get very sick.
- Managing housework. Right, so here’s how I work this side of things. The housework constantly begs for my attention, and unless I chip away at it grows into an unmanageable mess. So on the days when I am not having to sleep or suffering with a flare, I make a list of jobs that need to be done, prioritize them and begin at the top … but ONLY after having rested in my recliner for 30 minutes. When I feel ready, I tackle the first job. My rule is that as soon as I feel too tired or sore to continue, I sit down again and once I’m ready I will resume. It works really well, although the list may take several days to complete. But that’s totally OK, at least it gets done.
- Max is a computer whizz. He has organized my large medications lists, and complicated my medical history, including insurance and national health numbers, into two documents, both of which he made accessible on my cellphone. So if I’m ever visiting a specialist or hospital, I have all my up-to-date medical information. We also programmed a reminder to update the lists into our electronic diary once every three months.
These tips are but a mere few in a large and growing list. Now, I’m guessing that there are many others with scleroderma (or another chronic illness) who will have some excellent life hacks. Please do share them, because if we pool our ideas we can help each other make life that little bit easier.
Right, that’s it from me this week. I’m off to tackle the first housework task on my list … unloading the dishwasher … (not a favorite). Have a good week everyone!
Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to scleroderma.