Great article sent to us , which we just had to share.
Got us thinking, what do you love doing despite your chronic pain?
Hi Mads -
Well, we all have to have something to keep us interested in life and to try and take our minds away from the horrors of EM -
My Interests lie in my Guitars, Building and playing my tube amplifiers and talking to fellow Ham Radio enthusiasts locally and worldwide - I have had a visit from an English man tast week and he might drop in again before he heads back - His daughter lives in Cooma NSW - so he thought he had better look me up while here - I had spoken to him about 2 years ago on the radio .... Great guy and lots of interests away from the ham radio as well ....
I enjoy playing free expression improvisation blues to some backing tracks and lose myself in the music for an hour or 2 each time I plug a guitar into an amp - I have 4 guitars and 3 amps with an effects pedal board with 4 pedals at the moment and looking to get myself another guitar or two later on .... When I am playing I seem to forget about my feet even though they may be burning I let the music take over what I am doing and feeling .... it is extremely GOOD Therapy that I would recomend to anyone - any form of musical instrument - something to get some pleasure from and keep the mind from wandering to far regarding the pain ....
I try to keep busy with small projects like building my own amps & effects pedals and other electronic projects - it is good to have something to take my mind off the ailments .....
Are there any other budding Muso's here on the forum ??? or any Ham Radio enthusiasts ??? or Motorcycle enthusiasts as that is still a very strong passion of mine even though I can't ride any more I still love to watch motorcycle racing on TV, be it local Australian stuff or the World MotoGP which is televised here for the whole season - some brilliant riders and close racing at times get me on the edge of my chair ..... and takes my mind off the horrid EM symptoms for a while ....
Yes, WE ALL Do Need some sort of distraction/s in our lives to cope with having to Live with Erythromalalgia (EM) and having hobbies and interests that take our mind/s off the pain and suffering even for a brief time is well worth persuing ...
Take care out there and enjoy your hobbies and interests as I do -
Regards -
Greg (frostbite)
COOMA NSW
Thanks for sharing this wonderful article! I agree that it’s so important to do things that we love. I am fortunately not as limited in my activities as some here: I can still go out for short periods of time to do errands, grocery shopping, lunch with a friend, taking a scenic ride in the car. These may not seem overly exciting, but I enjoy the feeling of accomplishment that they give me. I also like to read, watch TV, play online, draw mandalas and zentangles, and spend some time each day embracing my spiritual path. I do get depressed and frustrated quite a lot, but these things help me help myself get out of it, even if for a little while. <3
It's a great article, thank you so much for sharing it!
I recently started thinking about the things I won't be able to do anymore (which I find depressing), like long hikes, and loved the suggestion of being driven somewhere full of nature and beautiful. The article is full of great suggestions and is absolutely right in stressing how important it is to do things that we love and compelling us into finding modifications of what we used to do. And suggesting new activities, why not? :) I love playing folk music and dancing (maybe I can still do the less energetic ones?), going to the beach for a swim (I suspect that's kind of over), reading, watching TV series, baking, going out for walks, and I recently took up knitting - oddly addictive! :)
Take care
Nice article, and even more, nice to hear what others on this site do. I sit with my feet in gallon ziploc bags in cool water and play my ukulele (a new treat). And now my son is taking me to test drive a banjo (I have no license, but I learned three chords so I can tell if it fits). I sit at my easel and paint. I live at 8,000 ft. in the mountains in New Mexico, so when the weather is cold (which is all winter) I can walk a short ways. I can drive if I put the air conditioner onto my feet and go barefoot. I can sew with one foot in the cooler of water, the other on the foot thingy, and then alternate feet. I roll around on the rug and do stretches and twists. I lift weights sitting in the chair (again, feet in cool water). And on cool days or early mornings (always cool here) I hoola hoop barefoot on the brick porch, moving around if the bricks warm up under my feet. I can't do that, or any standing, too long, though. And also addictive, I crochet. You already know where the feet are.
Unfortunately I recently read that a sedentary lifestyle is dangerous. It recommended standing up, at the very least, every 30 mins. or so. So, with feet still in cooler, I try to remember to do that. And twist and semi-squat up and down a bit while standing.
I think swimming would be great, in cool water. But that's not in abundance around here.
Thanks, Mads, for the discussion. And, I think you're doing a GREAT job as moderator!
Love, Jane
This is a great and much needed discussion. I's important to take the time and focus on what you can do instead of worrying about what you can't. I like t o play games, board games , puzzle games , online and video games. I am truly a child at heart when it comes to games! I also love anything crafty. All of these subject to my hands allowing me to do so. I also enjoy spending time learning and nurturing my spirituality. Even when at my worst and can't to much of the above I can always escape with my one after another netflix series marathon on tv.
I love to sing! I am in a Women's Barbershop Chorus which I enjoy. I can usually stand up on the risers for most of our rehearsals but everyone is very understanding when I need to sit down. Sometimes I am lucky if my flaring waits until I get back home.
I also like working with children. For the most part I don't flare during the day unless I do something to trigger it so I can have fun with the children I care for.
Hello Mads,
I deeply appreciate the positive posts in this discussion detailing the interests to get our minds off the problem we share.
I enjoy photography and learning ways to process the photos I’ve stashed in the computer, with Photoshop and Lightroom and NIK editing programs. There is always more to learn, especially online tutorials and with YouTube.
The time goes by rapidly with my mind off my burning feet as I cool them down with the Chilly Pad evaporative cooling towel that I found in the camping & sports area at Walmart (Frogg Toggs Chilly Pad) http://www.froggtoggs.com/cooling/the-chilly-pad.html I can get by with 10 minutes of moving my feet around the pad to find cool spots with a fan blowing to help the evaporative cooling. The cooling effect is prompt, blessed relief both during my treatment and after I’ve put the towel away! That was easy!
And then I send the edited images to Costco for color prints. I still page through the Sierra Club Engagement Calendars that I’ve kept from the 70’s and 80’s for inspiring shots. Back in those days I processed black and white prints in a darkroom, with the idea of making color prints out of my financial range. Now, I can make nice low-cost color prints that get better with each technique I pursue. It’s the satisfaction of creating decent images that makes me feel good! Making black and white images is another challenge I’m pursuing. I belong to a camera club here in Albuquerque that provides comradery and feeds my questing spirit.
Doubt if this rates as a hobby, but since getting a turntable with a USB interface, I’m digitizing my vinyl album collection that takes me back to high school and college days. Listening to music is great therapy. I’m proud of myself for tackling Audacity software to make the conversion. That’s a joy, too!
Podcasts are another way for me to occupy my mind and to learn something new, too. iTunes is a great source of free podcasts. My favorites are from NPR. Then I can branch out to wherever my curiosity leads me. Inquiring minds want to know!
Perhaps my best survival tool in dealing with EM is a positive attitude, an intellectual curiosity, and the emotional satisfaction of improving my skills. Thank you, Mads, for your efforts to moderate the discussions that help me know I’m not the only one with EM!!
Tostitoes
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