There are two truths I have come to learn about time. It comes and it goes. And nothing can or will ever change that.
I find myself at mercy to the ticking clock. Watching it dreadfully disappear, all the way to the opposite, of begging it go to faster. Living with a chronic illness has made me more aware of this friend/foe than I ever was before. Time is my constant battle. And fear is its fuel.
I have lived with this chronic illness for close to 18 years now, but nothing about it has been predictable. And as I have learned, I don’t believe it will ever be. Complex Regional Pain Syndrome is still so unknown to all of those it impacts; why we have it, what will develop over time, to what we will need in order to continue treating the symptoms. All unknown. And time doesn’t seem to make that any easier.
I thought by now, more would have been discovered or learned about this rare disease. I am thankful, please don’t get me wrong, for all the growth, awareness and understanding it has received. I just suppose I thought, it would have been more by now.
I fear, just what my future may hold. I dread being 50 with this disease. As I am only soon to be 35. The complications that have arose over just the last five years have been more than exhausting even comes close to describing. Each day brings upon its own challenges and awareness needed from within. And I can’t imagine doing all this, as my shell itself gets older. Which is a fate of life I cannot stop.
But the two truths still stand…time comes and time goes. With no mercy. And no time outs. I can only hope, that with each passing day, more and more is learned for those diagnosed with CRPS following myself. And for those that have lived with this misunderstood disease for far too long already!
My life seems to fit pretty well into that definition these days. A challenge of monotony and chronic illness is something you don't hear about much. But it is a real challenge for those fighting daily illness. And for me, monotony always seems to cause a spiral into a downward motion mentally. Let alone the personal despair it causes me to feel. The time exhausted just living on routine and nothingness. Not the dream life, one would say.
I have been on disability since 2018. Which I had to pursue due to my ailing health. And I am beyond thankful to have it in place. It allowed me to feel a bit secure in my financial independence, which was crucial due to never feeling confident with my health and this body I was gifted to live in. But if I am being honest, disability changed my life drastically. Not just in the ways that are obvious to the human eye. But beyond that. My normalcy of a work schedule and social outings disappeared. And in came, monotony.
Honestly if I didn’t have the non profit and support group to run, I am pretty sure I would be in a really dark place personally. Since I quit my job in 2017…my social life practically disappeared. All the so called “friendships” were the first to go. Next it was the “boyfriend.” Then it was all social groups all together. It is true when they say, you’ll never know until it happens to you. I didn’t, until I did. I had no idea how it would feel to disappear, until I did.
Finding myself has not been an easy process. I lost all routines. All schedules. All normalcy when I had to end my employment and focus solely on my health. At first, my sole concern was getting better or just plain surviving. But it has also been a full time job, focusing on my health and mind. Everyday was a battle cry of chronic illness. The tedious part of life for me, was focusing everything I had on my nutrition and hydration. To watching countless reruns on TV. To finding a place to lay either on the couch or bed. No more, but on days, certainly, less.
Five years later….I still fight the monotony of chronic illness. I fight to find something to focus on. Whether it is searching for something or finding the energy to complete it. I fight to find a purpose, for what seems like…daily. I fight to keep my schedule intriguing but not overdoing. I fight to use energy, but not deplete it. I fight to live, with a sole purpose of still existing. Still being present, but not overdoing it. So my schedule, more than not, becomes monotonous.
Chronic illness brings challenges no one ever talks about. It brings depth to your journey that you never knew existed. It challenges every light source you have. Until you’re left with… “I had no choice but to keep going.’ Being chronically ill, brings a potential of monotony. Not the good kind. The kind you fight with for the rest of your life. It is what you do with it that matters most!
Keep fighting Warriors!
As I sit here, watching every inch of concrete slowly be covered once again with the thickness of white, I realize, I sit here alone.
Winter has come with a force this year, and tomorrow is technically the first day of the season. Although it does not feel like that. I can't even recall how many winter storms we have had up unto this point. I just know that Winter has been upon Spokane for a few weeks already. Countless events of wintery wonder. Left with unbearable temperatures. Locked indoors. Unless essential or demanding needs are asked.
So needless to say, I should be used to this by now. The monotony of winter. The isolation of the season. The replayed playlists. Endless reruns. To the boredom that leaves you taking a few too many naps. Winter brings upon its own challenges for someone living with Complex Regional Pain Syndrome. Winter is a season for endless flus within the community. Germs spreading like wildfire. And that alone can be a fight having a weaken immune system. Then there are the cold temperatures, intensifying our pain levels. From the dry skin to the lack of movement. Winter bring a different kind of chronic pain to life.
I have lived in my current apartment, alone, for the past 2 1/2 years. Every winter, my loneliness intensifies. I find myself leaning on my family a lot more for reasons to get out of the house. And I can't imagine that I am the only CRPS patient that feels this way.
During the warmer seasons here in the Pacific Northwest, I find myself able to get out a lot easier. Finding excuses to explore when I can, let alone go on back road drives, just to battle the isolation of my four walls. But during the winter, everything changes. My energy quickly depletes. My pain level rises. My depression intensifies. My self worth struggles. I feel winter in every inch of my life.
So almost every year, around this time, December especially, I have to give myself a little break. I have to tell myself, its okay, to: take two baths a day, to take naps, to binge watch TV while snuggling my heating pad, to eating more accessible meal options. I have to tell myself, this is how I can help be my best friend in a season of unavoidable struggles. I give myself self talk dusted in sugar. I tell myself, this too shall pass, but until then, I am giving myself all the tools I need. Which sometimes, is giving ourselves grace, to just not do as much. And sometimes that is enough.
When I began the process for disability, my partner at the time, understood. Or so I thought. We had been together thru so many emergent health crisis's and also the placing and removal of the NG feeding tube. We had been thru me quitting my career in the service industry together, which was hard on us both. But none of that made us secure in our futures together. And I soon found that out.
Dating with a persistent chronic pain disorder has never been “easy” for me. In most of my relationships I had hid the true depths of the disease I was living with. From the pain to the inabilities. But my ex, saw every little thing. Every emergency room visit. Every call to cancel my work shifts. To watching me fully loose myself to the depths of the condition nicknamed “the suicide disease.” We were together in the thick of it. Or so I thought.
Sickness can make or break a relationship. This, I have learned. That really is the truth. And it did…break us. Our foundation was not strong enough to face the things we needed to. Which showed in the end.
Fast forward to today. 2022. I have been single now for four plus years. I was awarded my official disability status after we had called it quits, back in 2018.
From the social outings to the intimacy… we honestly struggled. I transformed from an extremely dedicated worker, to a very ill CRPS patient. I lost my ability to believe someone could love me despite my personal challenges.
But here I sit, only 34 years of age. Single. Something I don’t want to be for the rest of my life. But now the question is…. How do I date? How do I explain my life to a new person? Will it scare them off? Will they still see me as an equal?
The term disability has such a strong stigma. And I don’t know if I am enough of a person to break it. When you hear that term, you think unable, incapacitated, permanent…You hear the negatives before you can hear the positives. It is an intimidating term.
You see…I recently started to get to know someone. Someone I feel is kind of special. Who might be a fit, for me specifically. But fear is taking over. As much as I know I need to give him a fair chance of answering the question himself…I can’t help but worry what he will think when I tell him I am on disability. Will he disappear? Will he think my personal strength is weak? Will he, think less of me? Or not at all once he knows my truth.
I am a person who is very big on honesty. Especially in relationships. And every day, he texts me…”How is work going for you?” I reply, “my day is good”… no lie. Just no omission. I am fearful. Of losing the opportunity to get to know someone, based on a truth in my life.
How do you explain to someone, new? How do you begin to tell them about CRPS and all of it’s complications? How can I tell him of my past and not scare him of the future?
I have lived with a CRPS diagnosis since 2005. Almost 18 years long. But my fear of telling people about it, never disappears. Telling someone that I care about, that I have an incurable nerve disease, which has a mind of its own, and that I can't fully predict what my future holds, is ----- HARD! I know that. But I do know, there is still a possibility of finding someone who can see past it. Someone who can still see me despite it all.
My question, is how do you find that? How do approach the situation with someone new? With someone you care about? How do I tell this man, I am still everything I have told him I am, but I also have a disability?
For the very first time in my dating history, I cannot hide my truth with CRPS. I cannot work. And I face unforeseen challenges from time to time. Yet, still I can love unconditionally. I am an avid outdoors girl. And am capable of still being the woman I say I am.
So here goes dating with a disability.
I lost a lot, or so it seemed, with a simple medical diagnosis of a rare nerve disease. I noticed them. I felt every loss. Or so I thought.
Fast forward 17 years…and the loss I find most important, is my self worth. My independent contract with myself. And it took me a little longer than I would like to admit to notice. I began realizing in x, y and z that the main factor was I didn’t feel worthy of anything more. I was receiving what I had deserved. And how terrible a feeling that is to come to. That every ounce of pain within my body was meant for me. Specifically.
I had this realization while having a personal chat with my sister a few weeks ago. She stopped me, during conversation, with tears boiling in her eyes. She said to me, “Jenn, you are worthy of so much in life, regardless of what disease you are diagnosed with. Don’t you know, your worth isn’t defined by your income, status or any health diagnosis. You are so loved, not because you face such challenging situations but because of who you are.” I don’t think up onto that moment, that I had ever felt that. Not because of my loved ones. But because I felt like a curse to anyone who got close to me. Like a voodoo doll stuck with twenty pins. Awaiting more.
My self worth, had failed me. Or I had failed it. But I didn’t realize it, until that moment. I felt like being on disability at 34 years old, Single, no children or possibility of them naturally, living alone in a one bedroom low income apartment…. Meant I was undesirable. I wasn’t worthy of the love and life I always dreamed of. And admitting that to myself in that exact moment, was harder than I ever imagined. But what hurt even more, was seeing my sisters heart break in the moment she realized I actually felt that way.
CRPS has in a sense taken a lot from me. Changed a lot more. But I never realized it took my self worth. It was a slow and steady defeat. One I NOW had to fight to recover.
Getting better…let me rephrase, living with CRPS is a marathon. A daily campaign. And sometimes, you have to reevaluate and review your personal challenges. Sometimes it’s more than the medical challenges. Sometimes it’s mental. It’s personal. It’s tough.
No one should ever feel unworthy in life. And I say this, because…if I felt it, I imagine others do too. I have to tell myself, as I rebuild…. That it’s ok to not be ok all the time. That’s human.
But self worth, shouldn’t be a factor in our diagnosis. You are more than your challenges and struggles. You are worthy despite your medical bills and limited lives. Your life can still be a beautiful place, filled with loving memories, despite what your body says it deserves. Love and life is not just for the healthy. You are worth every breath plus more.
Our expectations meet life’s unexpected twists, and our pretty plans are violated and shattered. We’re disappointed. In new territory. But in these moments, our self worth and self beliefs are what give us the strength to keep fighting. Don’t lose that strength. And if you have, it’s ok, it’s just time to rebuild.
From one warrior to another!
I was a very healthy child growing up. Most who knew me, knew that I was a tomboy at heart. I wore baggy jeans, short shaggy hair, no makeup, and I truly loved being active, with any sport. Then in 5th grade, I began developing some medical concerns. I started suffering with knee pain and instability, at the young age of 11. Back then, medical was not something me and my family every really had to deal with. I went from my primary doctor, telling me and my family that I was just going through growing pains. But the "growing pains" began getting unbearable.
I believe I was in 6th grade when I underwent my first surgery. Of which my first operation, a bilateral lateral release, was done on both of my knees at the same time. The surgery helped for the next few years. Until 2005, when I was a sophomore in high school. At this point, my left knee had become extremely unstable, leading to countless dislocations. It was at this point, that another surgery, was really my own choice for resolution. At the age of 15 years old, I had another surgery on my left knee, where they had to reattach my lateral tendon to the tibial bone. The surgery went as well as expected. But this…was not the end to my issues.
Recovery was extremely miserable. I was placed in a locked knee brace to avoid any unnecessary movement. The pain, instead of getting better, started to get worse. I was seeing a very educated and knowledgeable Orthopedic at that time, who was aware, that was I was dealing with was unnormal to most healing during from a surgery recovery. So he referred me to an Anesthesiologist to have some further testing done. And then is when I discovered that I developed a Rare Nerve disease.
When I was first diagnosed, the CRPS (formerly known as RSD), it was specific to only my left leg. And as the next few months passed, so did any knowledge that my medical providers where able to provide me with. Back in 2005, there was not a lot of data for this kind of diagnosis. Let alone, at that time, Google wasn’t a thing we could run to for information. And with the confusion further developing, so did the progression of my disease. Within a few months, the CRPS, began mirroring to my right leg. At this point, the only thing the doctors really knew what to do, was control my symptoms and pain with medications. My first few years with the diagnosis, were extremely challenging for me and my loved ones. We were relying on the professionals for any and all advice.
Fast forward to today, I am a 34 year old young lady. And I still hate telling this to others; because I fear, what they hear, they will assume that they will develop the same way I have. And the most important thing I have learned through my life, is no two bodies are alike. Let alone this disease. It ravages our bodies, minds, and souls all in very unique ways. But my truth, is I now have full body coverage, including my optical and my digestion. It did not happen over night. Some days, months, years, were worse than others. While, some were more manageable.
To date, I have tried almost every treatment that I have been given as an option. I have seen so many doctors, that I lost count. Let alone, the medications that I have been placed on over the years. I have ran into just about every emotion you can from being diagnosed with what is known as Incurable disease. I have loved some, and I have also lost love. I have seen the darkest of suffering. Yet I have also, seen some of the most amazing love and compassion.
My journey with Complex Regional Pain Syndrome has been true to the diseases name, Complex. The truth is, I cannot change my body. I can't go to a dealer and trade it in for a new model. This is the only shell (body) I will have in this life. It takes time and effort, but my resentment is fading. And disappearing. It wasn't the easiest, growing into a teenager with such a challenging medical. And I did, for a very long time, resent life. I was angry, and in severe pain during the years you should be spending at friends houses and parties. And because of that, I mostly handled my emotions with negative reactions. CRPS is so much more than just a peripheral nervous disease. It changes everything. Physically, mentally, spiritually. But the one thing I like to remind my self…is even though I can't change a lot of what happens, I can be aware of it. I truly try to give myself the self talk soaked in honey. And show myself, despite all the odds, that I can keep living. Living as a human, and not just a Medical ID #.
And with that thought, I changed from being a Victim of CRPS, to a Warrior of CRPS. I put a lot of effort and work into my life these days. But its not probably not what you would assume: medications, trials, procedures, ect. Instead, the efforts for me are self love, movement, rest, nutrition, awareness, avoidance of triggers, and most importantly…its compassion. CRPS, formerly known as Reflex Sympathetic Dystrophy, used to ravage my life and mind. I still have my days. Sometimes, my weeks to months, where I can't do anything but hold my wrist to remind myself I still have a pulse. Yet, I also have days, where all I can do is laugh hysterically. And smile from the inside knowing, Today, I won the CRPS challenge.
My name is Jennifer Ray…and I am a CRPS Warrior. Always and forever.
I used to believe there was a perfect relationship, a perfect job, and well, yes, a perfect life.
I used to believe a lot of things.
The perfect schedule though. I never used to think about that. Let alone believe in one. That was until chronic pain and its daily ailments crept into all my veins. But something changed when it crept into my mind, the perfect schedule became a necessity. Yet I couldn’t help but ask, is there even one?
Is there a perfect balance of work to home? From errands to outings? From extrovert to introvert? From balance to hectic?
At 34, single, no kids, no job, just me, my medical and my nonprofit…and I just don’t think there is. I can’t imagine if my plate happened to be filled differently. Somedays, my perfect schedule, is being able to do nothing at all. Sometimes weeks. And then sometimes, it controls me for months.
You see, a perfect schedule requires planning, consistency, and determination. And let’s talk real talk, my life is a three ring circus. One day its a dog and pony show. The next its a trapeze act. Maybe even a magnificent face painting monkey. No day is the same. Or adheres to the demanding need of schedule. Chronic pain just doesn’t care.
And to be even more honest, it cares the absolute least when you care the most. That right there is the secret ingredient to a recipe for disaster.