15 June 2015

Life hacks for managing chronic illness and disabilities.

I have to be innovative to manage Ichthyosis.

My feet have been in excruciating pain. They went through their annual shed - the skin on the soles slowly came away. My brain worked and body moved but it hurt to walk. I'd been bathing them in saltwater and dressing them with antiseptic cream and Tubifast. The dressing needed some padding to protect my soles - and so I used some nursing pads.

And at work, my manager and I created a stool for me to elevate my legs under my desk. Two small bins stacked together, padded with some old legislation books to make them taller! Such a relief to put my feet up!

I asked friends how they are innovative with managing their conditions.

Rachel said:
I'm studying (via block courses) at the moment and sitting upright in a normal chair for a couple of consecutive days is impossible for me. So I take along my beanbag, which means I can recline and use my chair for a footstool! It works a treat and I cope so much better with this small accomodation. People have been so lovely about it, too.
Kerry told me:
"I'm allergic to light and heat so I freeze wet towels to wrap myself in to relieve the pain and intense itch. so cold, but so nice!"
Elizabeth said:
"I wear Skechers Go Walk 2 shoes, the extra thick flexible sole cushions my feet. That way I can walk a lot more but I really wish they were more attractive, like my shoes used to be. Then again, I should be grateful I can still walk, lol."
My old next-door neighbour Naomi said:
"Ohhh... my last workplace bought me an ottoman to put my feet up on. It was one of the nicest things that a boss ever did for me. These days I switch tasks to keep productive through as much of the day as possible. I work from home so I can work lying down if I need to and nap in my lunch breaks. I cook meals on the weekend and freeze them so I don't have to order out if I'm having a bad day. I'm slowly learning to just freaking rest if I'm overtired."
Maria, who has Ichthyosis loves support socks:
"Support socks are my help for my sore and weeping legs."
Alfie's mum Cat told me
"It's amazing what we find to help us when we need to! I used to be able to take a nap at work on my lunch break when I needed to, I had a quiet room I could go to and not disability related but I used a tampon to stop a nose bleed...didn't look attractive but stopped my nose bleed!!"
Jess joked that she uses her two tall, strong bodies for jobs!:
"I have learned to open jars by smashing the top of it on the bench and popping it off. I can't hold my arms up long enough to hang washing on the clothes line, so I use clothes horses instead. I hang all my wet washing on coat hangers and almost never have to iron."

What 'life-hacks' do you use to manage your illness or disability?


  1. When I eat, I take a certain drug, and all up I take a good 30-40 capsules a day. Best way to carry all those buggers around turned out to be these little pouches from Woolworths designed for plastic bags. I have these stashed in bags, jackets and vehicles everywhere.

    For bowel disorders, folded toilet paper pads, permanent supply of baby wipes, and two or three toilet finder apps, because one never has all.

  2. Mine is being as organised as possible because it makes everything that bit easier. I wrote last week about my new medication organiser thingy - it's pretty awesome and I highly recommend getting one for people who take lots of medications each day

  3. We have an app on the phone to remind us to drink water (it feeds a little plant that you keep alive by logging your water intake) and alarms for taking meds.
    I always have chips and sports drinks in case I need salt and fluid to stop me passing out.
    I carry cohesive bandages (they stick to themselves) and sports tape to make on the go splints or strapping in case of unstable joints.
    I have hats, cowls, mitts and cardigans to put on and take off to try and control my temperature.
    I have squishy knitted gloves that I wear when driving to cushion the joints in my fingers that the steering wheel hurts.
    I have gardening gloves that I wear to pick up wood for the fire to stop it cutting my hands. My skin is fragile.
    I have a table and chair in the kitchen so I can prepare food while sitting down.
    I sit with rolled towels behind my lower back and a boomerang pillow on my lap to help keep my posture right.
    I'm sure there are many other things I've changed to help but I can't remember them right now.

  4. Yes, having Ich requires being innovative as often, a "normal" solution/treatment is impossible for those of us with Ich. Like Band-Aids for example. Can't have any adhesives stuck to my skin...

    One of mine is using tissue (like Kleenex) in place of Band-Aids. When I get dressed in the morning, I often will have raw wounds or cracks on my feet or legs. I can't put Band-Aids on them, but they need to be moisturized, covered and protected. So I cover them in Vaseline, then cover them with tissue. Then I put on my pantyhose, which keeps it in place.

    I wear long skirts, so most of it is covered anyway. It may seem like a strange fix, but it does the job. My wounds are moisturized and protected from my clothing, which helps them heal and keeps me mobile throughout the day.

    If it sticks and I can't get it off, it disintegrates in the bath or shower, so no worries there. :)

  5. Putting my feet up is important for me too. Often, even sitting down is not enough if my feet and badly swollen and blistered. They need to be elevated, preferably above my heart.

    However, I only had a desktop PC, so if I needed to work, I HAD to stay at my desk. Back in '08 though, I bought my first laptop and have never looked back. It allows me to sit in bed or on a couch and put my feet up, which makes a BIG difference when my feet are particularly blistered and swollen.

    With a laptop, I can still work, even if I can't be sitting up at a desk. It makes a difference. :)


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