Q&A: Isolation Mode & Chronic Pain: 8 Things You Need to Know
Raise your hand if you have ignored a phone call even though you were technically able to pick up? Was it in any way because of your chronic back pain symptoms or condition as a whole?
Have you changed (even slightly) because of your diagnosis along with the challenges that come with it? Maybe it's for the better. Maybe you've changed because you have to adapt and overcome.
If you can relate to any of us, you're not alone. What we just described is pretty typical for the life of a chronic back pain patient. So, in light of this and an upcoming Q&A with the Perfectly Ambitious Blogger, Ivy Cirillo, we're here to open your bedroom door (figuratively of course) and break down those walls. Let's get real because what's the point of anything less.
Here are eight things you need to know about isolation mode, chronic back pain, and how to break the cycle. Thanks to Ivy and her warrior strength, this is her story.
Q: Good afternoon Ivy and Happy Friday. Please introduce yourself to our community and feel name to name a fun fact.
A: Hi BackerNation. I am a blogger, author and creator and part-time literacy tutor. I am 22 years young. I live in the Sunshine State and I’ve resided on the Treasure Coast in a small beach town for about 19 out of my 22 years.
My fun fact is I actually used to be a varsity weightlifter and I've worked on Porsches and Jaguars. My dream is to live in the Carolinas so I can see the seasons change.
Q: Can you share an introduction to your health care journey?
A: My pain journey has been crazier than other people’s. My first diagnosis was PTSD at the age of 3 and I seemed perfectly healthy until my senior year of high school, which was my first physical diagnosis of hypothyroidism. Since then, I’ve gained about 15 additional diagnoses that include everything from anxiety, lupus (an inflammatory disease caused when the immune system attacks its own tissue), dysautonomia (refers to a wide range of conditions that affect the autonomic nervous system), and fibromyalgia (widespread chronic pain) among others — so I have an entire list of diagnosis.
Q: Do you find that you can still enjoy your hobbies and partake in your favorite activities while being a chronic back pain patient? If yes, what advice can you provide to someone who cannot? If no, what would it take for you to get there?
A: Both. I can and I can’t. I’ve learned to enjoy aspects of them. At one point, I was a photographer in Charleston, South Carolina. Once my lupus and dysautonomia kicked in, I didn’t have the best use of my legs, lungs, or heart so I kind of had to stop that but every once in a while, I still take pictures on my phone or pull out of my Nikon camera here and there.
My best advice would be learning to listen to your body and accepting your limitations, which of course is incredibly difficult.
If you know that certain things make you weak, for me, I’ll rest up before an event. I actually went to my first solo concert in my wheelchair last weekend. I gave myself a couple days of rest ahead of time and prepared to rest a few days afterward. I made sure to listen to my body to ensure I’d be able to get through the event and actually enjoy it. I don’t always need my wheelchair but I used it so I knew I’d get home safely and not sore the next day. I’m finding my new normal.
Q: As a chronic back pain patient, do you feel isolated at times? If so, how do you get yourself out of the isolation mode?
A: I definitely do and sometimes it’s with close friends and family because they already know my limitations and my answer to the question but I still want to be invited —even if I can’t go.
For me, I’ve learned to go ahead and text a friend that’s nearby, “Do you want food?”
“OK. I’ll bring some over.”
Sometimes you have to initiate these things yourself. For example, last weekend, I had an extra ticket to a concert and no one was free. I said you know what, I’m going to go by myself. I ended up making friends while I was there. Sometimes it’s just taking yourself out of your comfort zone and being active in your part of your social life. We can’t rely on someone else to invite you to something.
I struggle with social anxiety so much. I got to the point where I said, “I paid $80 for these tickets. When am I going to see Brad Paisley again? Screw it. I’m going.”
Q: How has your chronic back pain journey effected those personal relationships?
A: With the chance of my lung nodules turning to cancer, chronic back pain has had a tremendous impact on my relationship with my ex. The possibility of being in a wheelchair full-time with the likelihood of cancer, how can that not affect a relationship? It was one of those things where I was with my significant other, way before my health started to turn. So yes, my relationship with him was great in the beginning. And it could have been perfect had I not have all of these wellness issues.
As those words left Ivy’s mouth, I remembered an old quote by Marylyn Monroe, “If you can’t handle me at my worst then you don’t deserve me at my best.”
Exactly! Also, he is military so that adds an additional factor to the relationship. If I was going through chemo and he was on a deployment, I would need someone there. I would want my spouse to be with me through it all. It took a lot for me to come to the decision to separate from our marriage. Once I did, I knew the two of us had to sit down and talk about it together. I know he will make a wonderful husband — just not for me at this time.
I’m a little bit of a hopeless romantic, but I know that everything happens for a reason.
Q: What has been the most challenging part of your health care journey and why?
A: I think learning my limitations, which goes back to my last point. I was going to school, working multiple jobs, and participating in extracurricular activities. I was constantly tired and in pain not listening to my body or even acknowledging my limitations.
Today, I’ll practice self-care in all of those areas. I can get a little bit done every day and still continue moving forward without having to take that recovery period.
Q: If you could have one day without chronic back pain, what would you do?
A: I think my answer would have been different a week ago prior to me going to a concert by myself. Honestly, I would make the most of life any way I could. I’d travel and do something I never thought about doing. Because for me, I like seeing things. I don’t necessarily have to do things. I like going to the zoo and being able to enjoy and photograph the animals on my own without having to worry about my health or how I’m going to feel later — that would make me happy. I don’t even need to do a crazy bucket list thing because the small things are what add up to the big things day after day.
Q: As an inspiring blogger, creator, photographer, and so much more, how do you balance your life and career goals with your self-care and health care?
A: I’m still trying to find that balance. I don’t know if I ever will get there to a perfect degree but I’ve learned I have to be OK with not doing something on some days. I’m learning, as simple as it sounds, to take care of myself, which is huge for anyone who wants to make positive bold life changes in order to improve your overall wellness.
On a business note, I do try to keep somewhat of a normal work schedule but at the same time, it can be 2:00 a.m. and that’s when I decide to pull up my email and respond. I will keep it in a draft until it’s a normal business hour (because who wants to get a work email at 2 a.m.?). Sometimes, you just know when your body is going to work at its best and it may be 9 a.m. or 4 a.m. You have to listen to your body and know when you can do things.
There are times when I feel like complete crap all day. Those are the days I don’t want to do anything. I want to just binge on Netflix and eat bad food. Then, once it hits, it could be midnight, and I’m like, “I should have done something today.”
So, I’ll get that burst of energy and motivation to do something — even if it’s not when I should be doing it. You have to accept that your timeline is going to be different than other people but you’ll still get your stuff done.
You can’t just hope that good feeling will last until later. That’s one of the biggest things I’ve learned as a chronic illness warrior. If you feel good, do it then because you can’t guarantee you’ll feel well enough to do it later.
And always remember, if 'Plan A' didn't work, the alphabet has 25 more letters! Stay cool, Backers.
Thank you, Ivy. Those are words to live by.
“Each day holds a surprise. But only if we expect it, can we see, hear, or feel it —when it comes to us,” professor, writer, and theologian, Henri Nouwen wrote. “Let’s not be afraid to receive each day’s surprise, whether it comes to us as sorrow or as joy. It will open a new place in our hearts, a place where we can welcome new friends and celebrate more fully —our shared humanity.”
Let's pick up the phone when people call —even if we don't want to. Let's practice self-compassion. Let's break down our walls and welcome each day's surprise. We may even surprise ourselves. Hey, if Ivy can go to a concert alone and actually have fun, we can all do one thing a day that scares us. Just don't stay silent because there's always somewhere to spread love.
I love working with businesses, brands, and authors to help spread the word about their awesome products and services. If you think you'd be a good fit for my blog and would like a product shared or reviewed, feel free to shoot me an email.
Ivy loves chatting and making new friends, therefore, please feel free to contact her about anything. She will try to answer it to the best of her ability. And rest assured that Ivy does it all perfectly ambitious. Thanks again for everything!
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