By Dr. Michael Cooney
Clinical Director, Calmare Therapy NJ USA
Ready or not, feeling great or not so great, the holiday season is here and people want to see you, particularly after the confines of 2020.
Nonetheless, if you live with chronic pain, the unpredictability of your condition can add more stress and less joy to the season.
What are some tools neuropathy warriors can use to help enjoy but also navigate this time of year?
How do you enjoy special occasions without exhausting yourself or exacerbating your symptoms after the fact?
Who better to offer sound words of wisdom on the topic than other chronic pain warriors?
I am blessed with more than 4,000 friends on Facebook who graciously heeded my request to offer their guidance for this article. My deepest thanks to every pain warrior who contributed.
Note: For their privacy, we are publishing each contributor’s first name and first initial of the last name only. Some replies were edited for length.
I have a calming box next to my bed with happy photos of family, my favorite music and cards that I have received from family and friends, just to remind me that I’m not alone and people care about me.
Karen S. (21 years with RSD)
Look for future positive events or things coming up; doing so helps get you through the tough days when you have to miss parties and events!
My biggest tip for my (daughter) chronic pain warrior is always “it’s okay to say no” and put yourself first when needed, particularly when an event or situation will add unneeded stress during an already stressful time of year!
Just say no. It’s something I’m working on, especially with the holidays coming up, and I usually do a TON of baking and cooking, especially in December. But it’s completely ok to say ‘no’; it’s ok to say, “I don’t think I’ll be able to do that this year.”
Do a little at a time, take many “me” breaks. Rock in a rocking chair or walking with arms swinging helps spinal fluid flow for those of us with arachnoiditis. Definitely take one day on followed by one day off to rest your body.
Shop online. Buy cut-out cookies at the bakery to decorate with the grandkids. Use gift bags instead of wrapping paper. Split up cooking for holiday meals with family or friends. Take it easy on yourself and don’t let guilt get you down.
My advice would be to take your time with what you have to do and take breaks. Don’t feel guilty for saying no.
Find something each day to be thankful for or positive about.
And, remember, prayer works. 🙂
Rest when you can; I’m always overdoing it and paying a heavy price with pain later.
Do one thing each day that makes you happy, compartmentalize your pain so you can handle it, and be grateful you can still function.
And always be grateful for Dr. Cooney.
Brandi S. (living with bilateral CRPS ankles and feet, 9 years, two months, one day)
The #1 advice I have is to stretch those muscles! What makes it hurt a little less is knowing that you are gaining back the muscles you lost from being in pain for years.
Stretching helps you regain your balance, coordination, muscle strength and helps you improve spatial awareness.
If you have been thinking about working out for years but haven’t because pain stops you, just try. You’ll thank yourself!
It’s OKAY to say No. Some people may not understand why we can’t do some things, but if we don’t rest, we won’t be able to participate in the things that matter most.
I agree about online shopping, gift cards, etc. Also, I think it’s important to set boundaries for ourselves and take time away from the chaos of the holidays/family/etc.
Allow yourself to have quiet time. It’s hard to do that sometimes, but I think we do better when we can set limits, when we’re able to retain at least that control, we do a bit better.
I look forward to the blog!
Lots of rest, stay low stress and enjoy! Time is a thief of joy! Stay positive and keep moving forward! Enjoy when you can meet people but also maintain your boundaries of self care! Dr. Cooney, I’ll send some more specifics on options such as desensitization, icing, extra-strength Ibuprofen, as needed! We got this, CRPS warriors!
From a caregiver and partner point-of-view: Make sure to always be attentive. Sometimes a simple hug can work wonders to let the patient know they are seen and you are paying attention. Little things go a long way.
Resting is doing something. Give yourself a break. You are doing the best you can.
I’m coming up on 30 years with RSD and learned so much over the years from doctors and others who also share this wicked disease. We each have to find our own norm, as this illness isn’t one size fits all. I also try to keep as active as my body allows–the more I use muscles and my body–the less pain I have when moving.
Note this doesn’t include flares. (I don’t have control over them, unfortunately).
Tell the hostess you will be there, but your body will tell you when you absolutely need to go home. Most will offer you a bedroom to rest, if needed. There are days that it takes me 3-5 hours to get ready, because of the pain, but I go.
Wear comfy clothes and take a blanket, if that makes you feel more comfortable. Often, being around other people laughing and talking actually lets you put your pain away for a few hours, while other times it doesn’t help at all.
Even if I attend a gathering for 20 minutes and have to leave, I got myself out of my stay-at-home boredom and enjoyed living a normal life for a few precious minutes. It’s more than worth the effort.
Be your own advocate.
Get second opinions.
Reevaluate all the medication you are on.
Pay attention to your mental health because may of these prescription meds make you an emotional wreck.
Find alternatives that may work better for you.
About Dr. Cooney
Dr. Michael Cooney has been the clinical director of Calmare Therapy NJ USA since its inception in 2011. He is a global leader in the use of scrambler therapy to treat most types of medication and treatment-resistant neuropathic pain. Dr. Cooney has successfully treated more than 1,000 chronic pain warriors using Calmare Therapy. He will be featured in an upcoming PBS documentary, “Pain Secrets: The Science of Everyday Pain,” airing in December 2021.