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.
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Comments
Fern Greenfield
Dear Kim,
This is the first time that I am actually writing someone back. I am slowly getting used to reaching out to others that have this disease. I have systemic sclero for 23 years. I am now 56 years. It has been a roller coaster ride for my husband and myself. But, we try to make all the good days a really good day. It was lovely to read your story and to see a photo of such peaceful surroundings. I live in Montreal, Quebec, Canada. Thanks.
Kim Tocker
Hi Fern....I feel honoured that you are writing back...thank you, you've made my day :). I see that you have suffered with scleroderma for a long time now, we get so mentally and emotionally worn out with it don't we? Not to mention managing the physical side of things. Such a life change and plenty of challenges to negotiate. It's a courageous way that you approach this disease - trying to make each day a good one...that's such a wonderful way to manage. I like to use humour as a way to help lighten things, and enjoy seeing the funny side of life as I try to get through, although it can be difficult at times and hard to find the humour in many aspects of the disease. Being in contact with others who have scleroderma can be really helpful. There may be a support group in your area. In the meantime, thanks again for your message and stay as well as possible :)
C
You hit on something very important in your life hacks column. My need to keep my house work, paper work and other things in order. it gets out of control, the mess the papers and my entire life can fall into chaos and as you know the fatigue sets in then the whole thing seems overwhelming. your tip is right on target, make a list, do a little at a time and it does eventually get done. Look up the FLY LADY on line. she's full of really great tips that will help you tackle the everyday stuff and not feel overwhelmed. She's helped me stay on top of things and feel like i'm in control. I'm going to get the bag packed for hospitals so my fiance isn't overwhelmed with things i'll need. tomorrow is test day for echocardiogram. it's something I could do alone - test is only a hour but that's another thing...get him used to going to the hosp. when it's not some kind of crises so he's calm when the sh*t hits the fan with this illness. He's Good man... been by my side a lot of years when this illness came on 6 years ago...i suspect by a Anthrax vaccine i received...but who really knows...
Kim Tocker
Hi Wrekrider....thankyou, and yes, keeping things in order is one way in which we can feel a sense of control in our lives, and thus feel "safer", and as you say, much less overwhelmed. So interesting you mention the Fly lady. A close friend of mine has also mentioned her site, I must visit it to have a look. Honestly, as you know, anything that helps us to stay as mentally healthy as we can as we negotiate this wretched disease. I'm very glad to see you have a supportive fiance - so important. I hope all goes well with the echo (as I'm sure it will). So lovely to hear from you.
mjskit
Kim, What a great list for scleroderma sufferers and for anyone with a chronic illness! Thank you! I need to put that emergency pack together. Thanks goodness I've only had 2 trips to the ER in 14 years, but it sure would've have helped the husband. :) I've had scleroderma and polymyositis for 14 years and add another hack or two every 6 months because, as you well know, things do change. To piggyback off a couple of your ideas, because I also have Raynaud's, an extreme intolerance of cold anything, and a non-working epiglottis due to fibrosis, there are several things I do to lessen the effects. I dress in layers and always wear long sleeves. There is a sweater in the car for cold restaurants/offices and such. I never drink or eat anything cold. My morning milk even goes in the microwave before drinking or pouring on cereal. Water is ordered "without ice, please", and as you pointed out, water is always accessible. In respect to housekeeping, I break it up into days so I'm only doing a couple of hours of housework a day, at the most. My husband does the floors, period. Because of heart/lung issues, I just can't do those. For the laundry, one load a day, but then, since there are just the two of us, that's only 2-3 loads a week. :) I insist on doing the grocery shopping and cooking because I love doing them and as my mother always said as she grew old, "I'm doing it today, so I can do it tomorrow." She lived to 90! :) Thanks again for your post! MJ
Kim Tocker
Thanks so much for your reply and ideas MJ. W/hat you describe about your housework is almost identical to how I try to manage as well! I've been doing my grocery shopping online and it gets delivered to my door, which helps a great deal. I love your ideas about the temperature of things you eat and drink...it makes a huge difference to the core temperature of our bodies. Yes! My husband does our floors too....in fact my next column is one about this very topic....feel free to have a read of that one.
So lovely to hear from you, thanks so much for taking the time to reply!