What’s it really like to live with chronic illness every day? How do you deal with the physical symptoms, emotional turmoil and practical problems? In this interview series, real life ‘spoonies’ share their stories and tips.
PJ runs the motivational and inspirational website Pajama Daze for people with chronic illness, pain and fatigue. She’s currently writing her first book.
Tell us a little about yourself.
I’m 61 years old, retired on disability. I earned a BS Ed and an MA in Communication, am a Certified (PA) Holistic Health Educator, and was a Fellow of the PA Rural Leadership Program. In my previous life I worked in radio and television in both advertising and documentary production. I’ve worked in a couple of independent films, as well having published various pieces of freelance writing and photography. I also worked in community health education for several years.
I am currently writing my first book based on my website Pajama Daze for people with chronic illness. I’m also doing what I can to save pollinators through local projects and my website Posies for Pollinators.
I’ve had asthma all my life, arthritis and minor subluxations at various sites for much of my life, uterine cancer in 2002, three mild heart attacks in 2005, and another in 2008, caused by vascular spasms. It was discovered in 2010 that I have an uncommon disease called Fibromuscular Dysplasia (FMD), which causes abnormal cell growth in my carotid, vertebral and renal arteries, as well as other problems with connective tissue. I suffered with Chronic Fatigue Syndrome for 10 years after my heart attacks, but went into remission last summer, thankfully.
When did you first get sick?
I first became noticeably symptomatic with FMD in my mid-30’s, though it would be more than 20 years before I was diagnosed. I suffered from severe, debilitating migraines and dizzy spells which, thankfully, have become less prolonged and severe, but still crop up from time to time.
In what ways does having multiple chronic diseases affect your daily life?
Well, it’s always something! I’ve had to deal with chronic illness since I was born, and for much of my life, I’ve just adjusted to it. There’s always been certain things I can’t do, or can’t eat, or can’t be around. I don’t freak out about new diagnoses; it takes a lot to surprise me.
I take it as it comes, but that doesn’t mean I like it. I’ve learned to roll with the punches and take one day at a time, and make the best out of what I’ve got. I know that’s a bunch of cliches, but those cliches keep me centered and motivated. Here’s another that I rely on – where there’s a will, there’s a way. I truly believe that.
How do you handle everyday practical problems?
At my worst, I was fortunate to have friends to help me. I still have a friend who assists me at times in the garden and with heavier work in my house. I also have a cleaning lady who comes in once per month.
I’ve had terrible problems with my short-term memory since my heart attacks. My house is covered in Post-it Notes, and I have several calenders and a to-do list to keep me on track.
Do you have any tips on coping with symptoms? Is there anything you can do to prevent relapses?
Rest…rest…rest. Then move! Even when stuck in bed, it is good to stretch and move your limbs as often as possible. Now that I’m more active I do a seniors’ water aerobics class a couple of times a week. I take turmeric and tart cherry in capsules to help with inflammation from my arthritis, as well as soaking in Epsom Salt baths.
I’ve tried to eat fairly healthy most of the time, and just recently decided to transition to a plant-based diet. I believe it will help keep my cholesterol levels good (I’m off Crestor now), lower inflammation, help me lose weight, and give me more energy. Plus I feel it is important for helping the planet and showing compassion for animals.
I keep a cane by my bed in case I get a serious dizzy spell. And I take the edge off my migraines with Tylenol because I can’t take any of the other drugs for it. They aren’t as severe as they used to be. Years ago I had to take Vicodin.
I try to always give myself some lee-way when making plans, in case I do have a bad day.
How do you keep joy in your life on a day-to-day basis?
Doing what I love! I love to eat delicious food. I love to listen to music and sing along with it. I watch movies on Netflix and Amazon (I LOVE movies). I also love to visit my friend who houses the cats we rescued for a day of kitty cuddling. My spoonie friends on social media also give me lots of smiles. And in the summer, I sit on my back porch watching the flowers bloom and the birds fly by.
What would you like to tell others who are diagnosed with chronic illness?
Go ahead and grieve the life you lost, but don’t get stuck there. It’s a great opportunity to create a new life and find ways to do what you love.
Take care of yourself as if you are your own baby – self care is ESSENTIAL! You have to put yourself first to be able to give to anyone else.
Learn to pace yourself. Don’t feel guilty about saying NO, and learn to ask for help without guilt.
Learn everything you can about your condition and link up on social media with others who are helpful (but don’t tolerate people who are pushy or self-serving – you don’t need that).
If you don’t think your doctor is helping you, find a better one. Don’t settle for bad or mediocre health care. Help your medical team help you by keeping good records and being prepared for your appointments. Bring a friend to help you, if you need to.
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