This short week was long in more ways than one. I had my first Remicade infusion, which went well, but still took a lot out of me. Even though Scotty works on Saturday this week, I’m so very ready for the weekend. And FOOTBALL!!
This week also found me without a partner for Ask Away Friday until yesterday when Christy from Uplifting Families came to my rescue. Christy has lived with chronic pain for a number of years, but has also recently been diagnosed with Fibro. Since we’d swapped before, we thought this time maybe we should do a #spoonie themed swap, then we could pick up some tips from each other, and share some with you!
A spoonie asks and a spoonie answers…
1. We both live with chronic pain. What is one thing (non-medication) that can always take your mind off the pain?
I’ve said it before, and I’ll say it again: Screaming along with some of my favorite rock songs can always distract me from what’s ailing me.
2. What is the best advice someone has ever given you that has really helped you cope?
My gal Dawnie has given me some great advice over the last few years. At a particularly low point for me, she imparted this gem:
Celebrate each thing you do, each decision you make. Because it all counts. Don’t push so hard to be positive, instead be realistic. And when you’re able to do that, be really real with yourself, you’ll realize how much you really do each day.
I try to remember this every day. To be kind to myself when I fall behind on the chores, and still celebrate when all I can manage is to get out of bed and feed myself. Because it all matters.
3. When you’re having a good day, what is your favorite thing to do?
I love thrift shopping. My fiance and I will sometimes take $10 each and putter around local second hand stores to see what treasures we can find. Sometimes we find nothing. Other times we find fabric for one of my projects, or a piece of sports memorabilia for Scotty’s collection. Even if we don’t find anything, it’s nice to just walk around exploring.
4. What are 5 must have items you would recommend to fellow spoonies?
*Hot/Cold compresses. Preferably ones that can be used either way, and used many times. Homemade rice or bean bags are great.
*A stereo, mp3 player, or some sort of music playing device. And headphones so you can listen when everyone else is asleep and pain has you counting sheep.
*Comfort food. I always try to keep a few of my favorite treats around for the rough days. Because sometimes you just really need a bite of chocolate.
*Fuzzy socks or slippers WITH NON SKID SOLES. My feet are almost always cold, unless it’s 90+ degrees outside. And even then, sometimes. Loose fitting fuzzy socks warm my feet without being too constricting. But please, please, PLEASE make sure they’re “no-slip.” No need to have a nasty fall just because you wanted toasty toes.
*Something to cuddle. Whether it’s a kiddo, a spouse, a pet, a stuffed animal, or all of the above, always have something (or someone) to hug. You’d be surprised how much it helps.
5. What new activity or hobby have you picked up since you became a spoonie?
Honestly? Napping LOL. Before I got sick, I rarely slept during the day, I just could never shut my brain off. Now I love naps. If things work out right, I take one every afternoon. Sometimes I also sneak one in before lunch. And on really rough days, I take another right before dinner.
6. I have always been told that you are own best advocate for your health. Have you ever had to push your doctor to figure out what is wrong or to test a procedure or medication?
I’m blessed that my current team of doctors is pretty stellar. They all listen to me and my concerns, and we make decisions together. This hasn’t always been the case, and I’ve had to look for a second opinion or change doctors. Because we ARE our own best advocates, and we should NEVER be uncomfortable with our health decisions.
7. My dogs are a huge blessing, do you feel having pets helps you cope with your chronic illness?
Without a doubt, I know my life is better with my doggy. With recent flares and medication changes, Todd has proven that he was meant to be my companion. He curls up with me and licks my hand when he knows I’m hurting. If I stay in bed, he spends the day laying next to me. When I’m stressed or anxious, he does this cute floppy thing on the floor until I rub his belly. Which, of course, makes me smile and calms my mind.
8. Do you ever feel isolated since you stopped working?
Oh boy. Some days I swear if I have to stare at these four walls any longer, I’ll scream. My social life has gone WAY down, so yeah, there are moments where I feel really isolated. I’m blessed to have such a great online community of friends and family who remind me that I’m not alone, though, and that helps.
9. Do you feel your pain restricts you from doing things you enjoy?
Absolutely. Most days I try not to think about the things I can’t do anymore, because it kinda makes me a little crazy. I try to focus on the things I can still do, like my writing. But I’d be lying if I said I didn’t miss cross-stitching.
10. Do you feel that support groups are a great place to connect with other spoonies and find others who share a similar journey?
I do! Support groups and online communities can be great! There are many out there, so find the one(s) that’s right for you. They can be good resources for sharing tips and information on treatments, as well as a place to find a sympathetic ear for those really yucky days.
Thanks Christy for another great swap!
Do you have any tips for spoonies you’d add to this? Or maybe you have a question you’d like me to answer? Leave a comment and let me know! And if you’d like to join in on the Ask Away Friday fun, check out their Facebook group to get started. It’s a great bunch of bloggers who are more than happy to show you the ropes 🙂
Now…ARE YOU READY FOR SOME FOOTBALL?!?!?!?!