Navigating with Chronic Illness in a Self Absorbed World
Author: See Jayne Run
Jayne is a happily married fifty-something who struggles daily with the challenges of living with debilitating pain, fibromyalgia and chronic fatigue / myalgic encephalomyelitis . With a career background in the Private Club industry, she was forced into early retirement following a spinal injury when she was in her thirties. Jayne and her husband, to whom she refers in her writing as My Guy or MG, are the proud parents of a small terrier, avid foodies, culinary entrepreneurs and binge watchers of a little too much Netflix . But all too often, the couch is the only comfy place to be!
I’m taking a break as I rest up from a little treatment for my occipital neuralgia. So many of you have been so kind to stop by and visit and take the time to leave a comment or two and I just adore reading your notes and getting to know you all better. Thank you! I haven’t had it in me to respond much but I will soon!
Until I’m back and really able to dive into the blogosphere, I want to quickly mention a couple of things. I have visited so many of you and made comments to your posts or sent greeting emails through your contact pages and I think I may be ending up in your spam folders. Several of you have found me there and simply from the amount of comments that appear to have gotten lost in the ether, I can’t imagine that many of you have rejected me. (Oh no! That didn’t really occur to me until this minute!!)
I also have noted that many of you have mentioned that you have had trouble commenting on my site. Until I get this all figured out, I just wanted you to know that I’ve heard you and am trying to remedy it. Until I do, please don’t forget about me or lose faith in my commitment. We’re just getting to know one another!!
I don’t know about you but one of the most difficult things for me to manage while living with chronic pain is my diet. Not much of a cook to begin with, when I’m in serious pain and My Guy isn’t around to whip up something wonderful, it’s a real struggle to eat well. Many days, just getting down to the kitchen can feel like a trek. So I need to grab and go. On good days, I can do a little cooking if there’s not a ton of knife work involved or it’s not necessary to be cooking in front of the stove for a long period of time.
This recipe can be cooked in components, there is very little kitchen prep, and the time in front of the stove or grill is manageable. Everything reheats beautifully and you can switch up the overstock the next day by tossing it all together to make a flavorful chilled salad. It’s also gluten and dairy free. I hope you enjoy!
Make Hot and Fresh Roasted Tomato Salsa, Grilled New Potatoes, Roasted Asparagus Makes 4 Servings
Serve The Next Day Cold Bed of Mixed Greens, Scallions, Roasted Pumpkin Seeds Makes 1 Serving
Grilled New Potatoes
1 lb new potatoes, any color
Salt and pepper
2-3 Tbsp olive oil
Preheat grill or indoor grill plate. Wash potatoes and place in a medium saucepot. Cover with water, add a pinch of salt and place on stove. Bring to a boil, reduce to a simmer and cook for 15-20 minutes or until potatoes are tender. Drain and let cool.
Cut potatoes in half and place in a medium mixing bowl. Add salt, pepper and olive oil and toss to coat. Place on the grill, cut side down and cook 3-5 minutes, or until potatoes have nice grill marks. Remove and serve when ready. Potatoes may be served hot or cold.
Roasted Tomato Salsa
3 small tomatoes
1 Anaheim chili, stemmed, split and seeded
1 small yellow onion, sliced ¼-inch thick
1 Tbsp olive oil
Salt and pepper
2 cloves garlic, peeled and crushed
1-2 limes, juiced
Optional, 2 Tbsp stemmed and chopped cilantro
Preheat oven to 350°F. Core, split and squeeze the seeds and juice out of the tomatoes. Place the chili, sliced onion and tomatoes on a baking tray. Lightly coat with olive oil and sprinkle with salt and pepper. Place in the oven and roast for about 20 minutes, until the vegetables are soft. Remove and let cool.
Place the chili, onion, tomatoes and garlic in a food processor and blend well. Add half the lime juice, then season with salt and pepper to taste. Add more lime juice as needed. Transfer to a serving bowl and stir in the cilantro, if using. Will keep covered and refrigerated for up to 3 days. Makes about 2 cups
1 bundle asparagus, woody ends cut off
1 Tbsp olive oil or to coat
Salt and pepper
Preheat oven to 350°F. Lay the asparagus out on a metal sheet pan without stacking. Brush with the olive oil and sprinkle with salt and pepper. Place in the oven and roast for about 7-12 minutes, depending on the thickness of the spears, or until the spears are bendable and tender to the bite. Remove and serve, or let cool.
Dry Rub Grilled Triangle Tip Steaks
2 Tbsp Ancho chili powder
1 tsp salt
1 tsp black pepper
2 tsp sugar
2 tsp dried oregano
4 each 5-6 oz triangle tip steaks, about 1-inch thick
2-4 Tbsp olive oil
In a mixing bowl, combine the chili powder, salt, pepper, sugar and oregano. Liberally coat the steaks with the dry mix. Cover and refrigerate for at least 30 minutes or overnight. Brush the steaks with the olive oil when ready to cook.
Heat a grill or cast iron skillet on high heat. When hot, place the steaks on the grill or skillet. Cook for 5-6 minutes, then turn over and cook for an additional 5-6 minutes. At this point, the steaks are medium rare. Add 1-2 more minutes per degree of desired doneness. Remove and set aside to cool slightly.
Serve the Next Day Cold
Large handful mixed greens
¼ cup chopped scallions
1 Tbsp roasted and salted pumpkin seeds
½ cup Grilled New Potatoes
1 Dry Rub Grilled Triangle Tip Steak, sliced thin
1/3 cup Roasted Tomato Salsa
Any other raw, sliced or shaved vegetables (e.g. carrots, snap peas, mushrooms, celery, green onions, fennel, bell peppers)
To Assemble Pack all ingredients in separate containers. When ready to serve, place all ingredients in a serving bowl and toss together.
On and off throughout my pain journey I had seen a therapist who greatly helped me (and My Guy) with pain management techniques. If I take nothing away from the long hours we spent together, it is this most important thing: YOUR PAIN IS NOT YOUR STORY. REMOVE YOURSELF FROM THE STORY!
He was so right. It’s the best pain management technique I have in my arsenal. When I begin to lose the juggling game and my rings start falling to the ground (see previous blog Lady of the Rings: Pain Management is an Arduous Juggling Act), I NEED TO STAY OUT OF MY HEAD! If I can do that one thing, I can survive the complete car crash and get my rings back in the air sooner rather than much, much later. Unfortunately, I kinda forgot to remember this recently.
Everything seems to hit me three times harder than the Non-Chronic. I get that cold that everyone has and they’re down for 3 days; I’m down for 9. I have a minor surgical procedure and expected recovery time is 2 weeks; I need 6-8. Bloody frustrating as all hell!
My rings have been falling out of the tapestry for months now following some minor surgery I had in March. Once the surgery was scheduled, I anticipated this happening and tried my best to prepare for and prevent it from occurring.
Prior to surgery, I was doing really well with the juggling act. So, I thought I was well prepared. House (ring) was clean and well organized. This is key because if I need something, I know exactly where it is and I don’t need to expend unnecessary yet precious energy searching for it or crawling over a mess to get to it. I’ve been eating (ring) clean. No overly processed foods. Gluten, sugar and dairy are at a minimum. Plenty of protein and leafy greens. I’m getting daily exercise (ring) and meditation (ring). I’m in a good place with my family (ring) and friends and have made a point of reaching out (ring) to others instead of staying cocooned. I’m sleeping (ring) well and, last but not least, I have the appropriate medications (ring) in line with both surgical doctor and pain management doctor. All of the boxes are checked; all eight rings flying high. I am in a great place in my head and know I have this little surgery down!
Then all freaking hell breaks loose. And most of it, I did to myself. I forgot to Step Away From The Story!
Bad Timing. I was in a great place when I made arrangements for an absolute favorite person of mine to visit for a week just before the surgery. This is a person who is very important to me and we generally keep in regular touch via text about most aspects of our lives. She has kept me going a lot of times when there was no one else to whom I felt I could reach out. (Aside from My Guy. My Guy is a blessed constant.)
Just prior to her arrival, two things started to hit me very hard emotionally. 1. The first anniversary of my father’s death was approaching. 2. I began reading about and hearing about people who had died from multiple myeloma.
I don’t want to veer off course here so quickie backstory. 1. The Big Reminder of my dad’s passing was also shining a bright light on some family drama that is indirectly breaking my heart; therefore the approaching anniversary was not only reminding me of my dad and and our last days together but ridiculous drama that occurred after his death. 2. My Guy has both had a full complete response to treatment of and is in full remission of multiple myeloma, an incurable blood cancer. Now, My Guy can spin circles around me. He is now as healthy and strong as a horse, not a single cancer cell in sight. And we NEVER think that MM will beat him. But for some bloody reason, I’m being hit with deaths from MM everywhere I turn: in my daily news feed, a magazine I randomly pick up, my dentist’s cousin’s wife’s uncle, the damned novel I’m reading!
So now we’re off to the races because I’m in my head. I’ve allowed The Story to take over without even realizing it. The story is that I didn’t do enough for my dad; I am becoming estranged from my family; and I’m going to imminently lose My Guy. NONE OF WHICH IS TRUE! But I’ve already begun the narrative. There’s no turning back now.
Bad decisions. So my company is about to arrive. Party Time! Vacation! I begin to make unwise decisions. The first thing I do is get crap food in the house because you have to have cool and unhealthy snacks during Vacation Party Time. Now I know better than this. I promise you I do. I’m married to a professional chef, for heaven’s sake. And especially since his diagnosis, we eat wisely! But in the past, food had always been my go-to for Comfort, and now, in my weakened emotional state, I’m forgetting my good habits and heading straight for Comfort. I’m doing it on autopilot; these are not conscious decisions.
Favorite Person (FP) has arrived and it’s wonderful! Until it’s not. I’m visualizing a calendar in front of my face and seeing the countdown of days until my dad’s death anniversary. Why this is suddenly a thing with me I have no idea. We were able to prepare as much for his passing as one is able to prepare for such things. It was not a surprise but a natural course of events. But it’s like I’m expecting a massive explosion or something on Anniversary Day. Impending Doom. It’s an actual physical pressure building up inside of my body. And because of this, the Family Drama has become bigger and bigger and bigger in my head and it’s now playing on a constant loop. And then, of course, My Guy could die soon. Let’s not forget that.
Of course, all of this internalized drama, excess emotion, and lousy diet are affecting my pain levels which then is affecting my sleep. I’m not thinking clearly; the fibro-fog is rolling in fast and thick. I’m having difficulty focusing on conversation because I’m fixated on the pain and that’s adding to The Story. I’m getting short and crabby with FP. We had a reasonable activity agenda set prior to her arrival but that’s now become too much for me both physically and mentally but I don’t want to disappoint her. This is her vacation and she’s taken precious time off from work. I lose my temper and say some things I do not at all mean but I’ve hurt her. I apologize profusely and all appears to be well, but I know FP. The damage is done. I hate myself.
Shortly after she leaves, it’s D-Day. Not June 6th. Anniversary of Death Day. The following day is the surgery. I fall apart completely. I’m mourning for my dad like he died yesterday and grieving for my broken family. I’ve just had intrusive and painful surgery. I’m hurting everywhere. And I can’t get FP out of my head. I’m running with The Story again. I’ve let her down. She seems distant. How can I make this up to her? Has irreparable damage been done to our relationship? How soon will it be before My Guy’s cancer returns? What if he doesn’t respond to treatment this time? Will he die? My pain is never going to go away. I hate my life. Can’t I ever just have a freaking good day? It’s going to take me forever to recover from this. How many surgeries do I have to have? I look so old. And on it goes. I’m an official resident of Crazy Town.
Some miracles DO happen. I recovered well from the actual surgery. But after the necessary recuperation period, I couldn’t get back up again. All of my rings had fallen to the floor.
My clean and well organized house had become messy and disorganized. I became re-addicted to carbs, sugar and gluten and was freely eating the old junk trying to find that Comfort I (mistakenly) thought it had once given me. I hadn’t been exercising and when I started again I overdid it and then literally couldn’t move. My spinal pain became worse than it had been in recent years and the sleeplessness went on for weeks. My meds had gotten out of sync, causing strange nerve sensations and uncontrollable body twitches when I would try to rest. The nights were endless and agonizing. Screaming anxiety had taken control and capital D Depression was close on its heels. The black hole started sucking me in and I couldn’t seem to help myself. And, of course, The Story kept expanding and getting juicier with each passing day. I completely forgot the strongest tool in my pain management toolkit! I had become the freaking story!
Now I clearly did most of this to myself. Had I not allowed The Story to take over, I wouldn’t have gotten myself into such a fix. Oh, I would have dropped a few rings, sure. But with the right attitude, I could have easily added them back into the tapestry as soon as I was physically able to do so. Instead, I began the slick slide into The Dark Place.
Thank God I had a few aces up my sleeve! 1. My Guy, ever constant, ever loving, ever patient. (How does the man bloody DO it??) 2. My very smart and compassionate pain management doctor who really listens and never blows me off. Even when I sit in his office in a wet puddle of streaming tears and hiccoughing sobs. 3. Me. I somehow found the strength to stop listening to The Story. Every time I’d think a thread of the narrative, I’d stop myself by saying, NEXT! A hundred, five hundred, one thousand times a day. Over and over and over again! Next! Next! Next! Until The Story slowly began to fade and lose its power over me. Between the three of us, we were able to get me jump-started. Yet again.
Tomorrow I get my house cleaned! Seven more rings to go…
As we are all different, we all process our pain and emotions in myriad ways. I have been struggling with debilitating pain for 18 years. Prior to that, in my youth and early twenties, I struggled with severe anxiety and depression. I have experienced the dark night of the soul. But through countless struggle, I have found my way into the light. The goal for me is balance: the only pathway I have found that has no dead end. It sounds so simple but it’s actually damned monotonous and bloody hard work to attempt to live a life in balance while in constant pain. The slightest swerve has the potential of a car crash. But if I do not strive for balance scores of times throughout each day, I literally cannot get out of bed on the following day.
I’ve become a juggler; slowly learning a talent I never really had much dexterity for achieving. But as this necessity has been foisted upon me, I have slowly developed somewhat of a skill in keeping several rings in the air, flying overhead in a constant flurry. Once in a very great while, the stars align and I am able to keep all of the rings flying and it is indeed glorious. Life is beautiful and exciting. Adventure awaits around the very next corner.
Sometimes I drop one or two of the rings but manage to keep the others aloft, painstakingly re-adding the lost rings to the twirling tapestry one slow movement at a time. Life still goes on and the refocusing upon the dropped rings often results in new breakthroughs and achievements that may not have otherwise been found.
In a perfect world, we would be able to keep all of the proverbial rings in the air and manage our chronic illnesses with, well, perhaps not ease, but at least with efficiency. Unfortunately, fibromyalgia and chronic illness merrily fucks with our rings.
I have come to learn that, according to the laws of physics, it is inevitable that, at some point, there will be several triggers, a massive flare will ensue, and all of the rings will fall to earth, one after the other, as we watch, seemingly in slow motion, our entire world falling apart. It is tragic. It is devastating. We think there is no possible way that we can go on. And then, slowly, we pick up one ring, and then another and another. And then it is time to start juggling all over again.
Most people have a juggling act: their rings are generally made up of something like career, relationships, family, health, and religion or spirituality. Those of us with chronic health conditions have an additional set of rings to juggle and discovering what those rings are is imperative to managing our pain and living a life with meaning.
These are the rings I must juggle daily, and in no particular order, to maintain a purposeful life: diet, exercise, family, reaching inward, reaching outward, pain management toolkit, home, sleep. Each of these requires regular attention and care. For me, my over-active neural pathways are just as affected by any dereliction of these rings as is my heightened awareness to sound and light and pain during a fibro flare.
This is my world, these eight rings that rule my life. Each is necessary for the others to survive. And so, as my constant focus is to each of these rings, so will be the focus of the posts within this blog.
My Guy gave me this card many years ago and I have framed it and placed it in our meditation room. Because I find it so heartwrenchingly beautiful, I move it around often. Sometimes it’s on the bookshelves; sometimes the refectory table. Then one day, it’s on the chest or gets moved over to the end table. By moving it, I am constantly seeing it anew and it’s not just blending into the decor. I need to be reminded of this constantly. Life is not only lived in the good days. It’s lived in the bad ones, too. And EVERY day, I am making a transformation into a better and stronger and more beautiful me! I am a butterfly. And so are you.
This is my favorite time of year: pre-summer, as spring is such a late arrival in my neck of the woods. I’m blessed to live in a part of the country that gets lots of sunshine year round but the cold and wintry days can still get me down. As with everyone, and particularly those of us with chronic conditions, the weather can play an enormous role in our daily physical and emotional health.
The science may tell us it’s a coincidence but most of us who have broken a bone, suffer from arthritis, or have had surgical repairs with metal can be excellent weather forecasters. We can tell you when there’s a change in the barometric pressure, not because we’ve seen the local forecast, but because we can feel it in our joints and bones. The country seems to have gone crazy with its recent erratic weather changes and I’m good and ready to get off this particular roller coaster. Hot as blazes one day, serious snowfall the next; that mess melts and then several days of severe thunderstorms and tornadoes touching down all over the place! Every time the barometric pressure changes, I can feel it in all of my surgical sites and it just radiates…well, everywhere! The cervical site leads to migraines and the lumbar site radiates down both legs. Sleep is impossible and when the changes are so constant and erratic, there’s never a break in order for the body to stabilize. Discomfort turns into misery and day follows day follows day.
But now…I think…I pray…summer is almost here to stay. And perhaps there can be some balance again. That, my friend, is a damned good feeling! When you’re in constant pain, your world can become very, very small, so opening all the windows and doors, bringing a little sunshine and fresh breezes inside and being able to merge with the garden is extremely liberating. Simply sitting on the front porch with my morning coffee brings me one step closer to being out and about in the world. I may not necessarily be going anywhere, but…well, I am slightly less removed.
The balmy days somehow give me strength and confidence again so when my little terrier looks at me longingly with his leash hanging from his mouth, I actually feel like, yes, maybe I could be taken for a walk today. And maybe we can go a little further than we did yesterday.
When we return from our stroll, even though I’m out of breath and need to lie down now!, the swing in the garden awaits. I collapse onto the soft cushions as Bentley noisily laps up a refreshing drink. The pain is loudly acknowledging itself but it’s manageable. The sun is shining, the breeze is cooling, the fountain and wind chimes are tinkling and the aroma of lilacs intoxicates me. And Bentley and I are a part of it all. Not a bad day.
Massive kudos to my new friend Kim, fibromyalgia advocate for awareness. She produces a terrific blog that is as much fun as it is information-packed and I have recently enjoyed taking a deep dive into it. You can find her at I Tripped Over a Stone and make certain you do because it’s worth the stop. She has just been nominated for and accepted both The Blogger Recognition Award and The Sunshine Blogger Award. Woo Hoo! You go, Girl!
Kim has been instrumental in helping this newbie blogger get her act rolling and somewhat together and I am both humbled and grateful. Thank you Kim and congrats on the cool blogging awards!