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How many times have you heard the advice to “pace yourself?"

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Published on Tuesday, 14 April 2020 09:07

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The article below was writen by Stacey Lake regarding her fibromyalgia management and highlights a new audio channel which her wife and her are running. 

It’s recommended to Fibromyalgia warriors to do 20 minutes of activity and then rest. However, what nobody tells you is how long to rest for.

There’s no hard and fast rule for this, unfortunately. I know that is probably not what you want to hear, but as with most things concerning Fibromyalgia, nothing is certain. No two of us are the same and everything depends; how your pain is on that particular day, how your fatigue is, what your circumstances are, how your mental health is, whether you need to do dinner, pick up the kids, go to work, walk the dogs, do some chores, even something as simple as taking yourself to the toilet or turning on a light. On any given day our abilities vary and that is one of the most frustrating things about this disease in my opinion. Luckily, we live in a time where help can be, quite literally, at our fingertips.

My wife, Catie, and I use a lot of gadgets and technology, from electric tin openers to having a Smart Home, we do a lot to help make our lives simpler and easier to live with our chronic illnesses. Catie lives with RRMS, so we share the spoons as best we can. 

For Christmas, Catie bought me a Fitbit. Immediately, I reduced the 10,000 steps a day to a manageable amount for me. FOR ME. That is the key right there. Turns out, I actually UNDER-estimated my daily steps, which was a lovely feeling! So I upped it, twice, and then I reduced it again to an amount that was achievable but at the same time was pushing my body a bit as well. I’d set myself a manageable target, one that I could complete on most days without too much of a problem, and it felt good.

There were so many other things that I could use to help pace myself with my new Fitbit. I could track my sleep in detail, learning which stages of sleep I was in as well as having an accurate record of my sleep patterns for my Dr. It automatically tracked my swimming, meaning I didn’t have to worry about remembering to switch on a tracker before I started - great with my fibro fog!

I could track my water intake, my food, my heart rate, my weight and even my periods amongst other things. This meant I could keep an eye on my symptoms, when I had a bad day I could look back to see if there was a trend in what I was doing and if I could make adjustments to help myself.

Then, as I got swept away with the fun I was having with the Fitbit, I went a bit OTT with my gentle exercise and BAM! My hip had had enough, I couldn’t walk properly and the pain was horrendous. I had Trochanteric Bursitis, where there was inflammation of the fluid-filled sac (used to lubricate the joint) on the outside of my hip. I ended up having a cortisone injection into the greater trochanter muscle and was bedridden for 3 weeks. The bursitis had started a fibro flare and once more I was in hell.

This is where our other gadgets and technology came into play. I used mobility aids to get me to the toilet, my wife learned how to use the slow cooker to feed us nutritious meals, and because she doesn’t normally cook the microwave was used a lot! To add injury to injury, I sprained my wrist whilst using my crutches, so was wearing my wrist support. I used my iPhone to connect me to the world when I was feeling so alone in my bed. I was so grateful for our Smart Home, being able to turn the light on without getting up, to pause the TV from my bed, to set reminders for my foggy brain by just speaking out loud was amazing. I streamed YouTube and Netflix wirelessly from my phone to the TV. I even ordered a prescription without moving from the pillow nest I had made.

Technology is truly a magnificent thing, and that’s coming from a bit of a technophobe. However, without the technology I used during my flare I’m certain that it would have lasted an awful lot longer. It helped me to pace myself, saving me as many spoons as possible so that my body could concentrate on getting back to my baseline. Even once I was up and about it has taken me weeks to get over this latest flare and I’m still not as good as I was before the bursitis hit me. Without the tech, I have no doubt I’d be way behind with my recovery.

There is a new YouTube channel and podcast that is dedicated to helping those with disabilities and chronic illnesses to use technology and gadgets in their everyday lives to #MakeLifeSimpler​, which can only be a good thing.

My wife, Catie, hosts the podcast - entitled ​Living, Enabled​.Seed funded by a Crowdfunding campaign, which secured match funding from NatWest, the podcast is available now in audio and video versions.

Living, Enabled has set out to help those most vulnerable in our society. Through news and reviews on the latest innovations and guidance on how to apply it to our lives. Encouraging us to find new ways to make life easier with a little help from technology. 

• You can access the audio version from the podcast page at: http://podcast.livingenabled.com/
• The video version is accessible on the show’s YouTube channel: http://bit.ly/LEonYT
• There’s a new supporters Patreon page that can be found by visiting: https://www.patreon.com/LivingEnabled