Category Archives: Chronic Pain
Living with constant chronic pain or chronic illness is no party, but you may have been invited to a few this holiday season. Here are some ideas and tips to help you make it through the festivities as we approach the new year.
1. No Cocktails
I know, I know, at your next party, you may be thinking:
“Ughh, why did I come? How do I even get comfortable in this chair? At least I’m not squished on the couch. Did anyone notice that full body spasm? Oh great. And now my hands are shaking. Better put my drink down before I spill it. At least it isn’t red wine. Of course not, because wine is a trigger food and 8 of 10 of my medications don’t party well with alcohol.”
See, isn’t this fiesta turning out to be fun?! But don’t worry about the NO DRINKING POLICY. Your brain fog keeps you so fuzzy and clumsy on a regular basis that you’ll fit right in with your drunk buddies!
2. Polite Conversation
Look at all of those healthy attractive people around you playing ping pong with their witty dialogue. “Hmmm? What? Oh, no that’s not a fashion statement. That’s called a compression sock. Thank you so much for noticing. Yes, those are my favorite shoes…I guess. I know, I always wear them, don’t I? Ha, ha. You are so observant. You know, you should really go bird watching sometime- I hear that is a great hobby for people who enjoy staring.”
See, you can play this game of witt too. What a wonderful party!
When in doubt, smile.
Always keep them guessing. When your pain is on red alert and your brain is on complete shutdown, SMILE!
It tells people that they can relax and have a great time no matter how sick you are. You can always go to the ER later, tonight is for celebrating!
So flash those pearly whites and watch your friends dance, karaoke, tell work-related stories, and get jiggy. They’ll remember you being a sweet, saint-like creature, and little did they know you were just half-conscious from pain. Talk about a party trick!
Nope, parties just aren’t as fun as they used to be. And please don’t go around asking people what I USED to do at parties… (seriously, don’t). But it’s still great to get out and make memories whenever we are able. And when you are not able, know the party won’t be the same without you.
Merry Christmas, happy holidays!
This is one of my favorite pieces I published in 2014. A snarky spin on the old Emily Post / “Miss Manners” columns from the 1950’s.
Part I of II – By guestwriter Cammie LaValle
Remember that light inside of you that used to shine? We reminisce about it in our heads; to that person we used to be. That silent yet screaming conversation in our minds we have on a daily basis. For some, it’s the majority of the actual conversing we do and sadly, it’s only with ourselves. We are feeling ourselves; our internal light; the fire that once helped us accomplish so many things in life, be reduced to less than a flame; more like a sad, almost non-existent spark which could barely keep a match lit.
Sure, there are flickers of hope and tiny little fires at times; but personally, they are getting few and far between. I have not given up all hope, but I am struggling to keep the grasp.
One of my motto’s is “Let Your Soul Shine” taken from a song. How hypocritical of me to tell others to do just that when I am watching, feeling and experiencing my own go darker and darker every day. I don’t mean dark as in evil, although I will admit I’ve had some pretty evil scenarios which I wish would play out in the lives of some of the doctors I have encountered in the last few years. No, I would not harm anyone; but as you read that, I am certain you can recall one of those thoughts that has played out in your mind so detailed as though you were actually plotting a dismemberment. I for one thought a log-splitter would suffice.
As I am writing this, I have backspaced hundreds of times thinking what I have to say or what I feel is not ready to be heard or will be perceived as seeking pity, over reacting, not being thankful for what I do have or God forbid, the “It could be worse” reaction we often get. Yes, we all comprehend that, but more often than not, it is far from a supportive statement as we perceive it. Minimizing our hell is what most of us feel; even though we know most of you mean well when it’s said. But I realized the words I put down, if were written by someone else and read by me, are exactly the words I would need to hear; and yearn to hear. So without a hesitant mind, and the pain jolting through my body and hands, I shall spill the complete ugly truth that I am not shining by any means. I’ve gone dim. This is not news to some; as they know me too well to believe the crap that spews out of my mouth when I say “I’m fine.”
I ask myself daily, how much more can I handle? Do I even want to for that matter? Yes, those thoughts are there when in my dimmest hours. Will I say it out loud? Probably not. Will I say it here, when I know others just like me are reading this; yes, yes I will. I can’t say I am proud of my thoughts, but I can say I am not about to blow sunshine up anyone’s ass; especially knowing the people reading this are struggling right along with me. That’s not what we need and I may very well do it to others so they don’t have to worry about me, but I will not do it to you. I know that sounds terrible as I have more than likely never met or ever will meet 99.999 % of you. Why be truthful to people I don’t know and hide and lie to my own family and friends? I have no clue the rationale behind this and won’t pretend I do either. What I do know is that there is a greater chance those reading this, understand it to their core and need no explanation of the words, the thoughts, the expressions, the pain, the isolation, the self-doubt, and the meaning behind “Going Dim”. I fully understand all humans go through struggles in life and I am not discounting any of that; anyone or any struggle of any kind. I am addressing our struggle.
I am opening up my broken spirit and soul, my tired mind, and using my pain riddled body, to let YOU know, you are far from alone in this battle. And I may be writing what you can’t dare to say out loud, but feel it as if it has taken over your entire being. I know I have read some stories which after the first sentence I felt the lump in my throat. I certainly am not sharing to cause distress or any tears, but if anyone reading this has that lump, let yourself feel the emotion and release some of that internal pain that is eating you alive and has taken over a portion of your soul.
More than likely you have caught on that I have not begun to describe the pain. If you are reading this, you already know how it will read. However, for those friends or family that are reading this who have a loved one suffering, I will follow this with a brutal truth that the one you know, who is suffering, is too damn scared to tell you. Whether it be pride, or wanting the world to believe we can handle this, or the complete farce we muster up in order to appear stronger than we actually feel. Your loved one has gone dim. And you might have as well; attempting to care for them. Addressing the other side of this is just as important as addressing ourselves.
The ME I once was, is still seen by my husband and some family and friends; however, I don’t see her. I feel as if she’s gone for good. I talk with her in my mind and actually pray she will come back, somehow, some way. She could light up a room (from what I was told). She was vibrant, funny, witty, intelligent, strong, hard-working, worthy, helpful, selfless, and although some deep down pain existed as we all have and hide; she was happy. She helped raise 2 children, who she loves. She was a good wife, a good friend, a reliable sister and had worked since a very young age; worked her ass off. Now, the relentless quest for her to return has come up empty. She was me. I was her. We’ve both gone dim.
Where did she go? CRPS (full body), Fibromyalgia in addition about a dozen other health issues; some quite severe, has held her captive and the ransom demand at this time cannot be met. The hope and flicker of light is diminishing. Sure, I say I am hopeful and staying positive, but who am I kidding? It’s gradually becoming such a farce, I can barely hold back the tears when I say I am still positive. It’s a blatant lie. I feel as if I am getting a very real glimpse of Hell.
Ice pick, razor blade, vice, hammer, pins, needles, knife, match, truck, salt, gasoline, fire, electric shock and flames; all of which I feel has been used during this captivity. A scene from a mysterious attempted murder movie in which we wait in the trunk to be rescued. Someone on the outside may not comprehend that comparison, but I, along with so many others; truly feel this. And the trunk is our lives at times. That dim, cold, dark, isolated place, we don’t willingly go to, but find ourselves there, stuck; more often than not. The tools used is what we compare our pain to; as CRPS/RSD plays out such a brutal attack on our bodies daily. As we wait for the ransom, which in our lives is a doctor, a treatment, a cure, we succumb to this attack and 24/7 try to prepare ourselves for the next dreadful blow. I try to hold it in as to not be a burden; not wanting people to see how bad it is. There are times it just comes out, screaming, howling, paralyzing pain to the point I can barely breathe. Arms, legs, feet, back, hips, face, ears, chest pain where it feels like I am having a heart attack, but I know I am not. Then I think, what if I do have a heart attack? If I feel like that daily, if I have one, will I even know? And my hypertension gets so out of control, my neck feels like I am being stabbed, my vision gets blurry, I lose minutes and have lost recollection of hours of time. I get scared to be alone in my own home. This scares the sh*t out of me! On nights the blood pressure is too high and the chest pain is severe, I am too damn scared to go to sleep as I honestly wonder if I will wake up. Yes, that is how my mind works. I pray I wake up. I won’t go into the thoughts and prayers that go on, when I honestly question if my life, as I know it, is actually ending that evening. This is brutally honest and I know it sounds far-fetched to some. But, many reading this feel the same way or have felt the same way. I am saying it now, to give you some peace of mind that you are far from alone. It is not by any means a healthy way of thinking, but it is where one’s mind tends to go at times. I am not proud of these thoughts, but they are true.
Pain changes people. It’s relentless. The beast wins in those moments and all I can do is wait for it to let go of its ever so tight grip of my body. I think to myself during these times, how the hell am I to live this way? How is my husband to live this way, with his wife being consumed by pain, lost herself and her feeling of self-worth? I am not the woman he married. Far, far from it. He is my biggest advocate and has not left my side, although I wouldn’t blame him. His wife is gone. The anxiety, stress and depression that goes along with this beast leads my mind to wonder “when” he will have had enough; not “if”. For better or worse, sickness and in health, meant something to him, just as it did and does to me. How lucky am I to have such a man who took his vows so serious, that as he watches his wife diminish and change into someone he didn’t marry, he continues to assure me we are in this together and he will never leave my side. He is the only one who can make these demons stop in my head. He is the only one who has seen it all and still has faith I will come out of it; come back as the woman he married; come back from “Going Dim”.
What has brought you to this page, is why many of you will understand what I am about to say next. You are dim yourself from disease and pain or you are caring for someone and are desperately trying to find a way to understand and help that person; your loved one. (For those seeking help to care for another – THANK YOU! Sadly enough, you may be the only one doing so for that lost screaming soul).
Too many are left alone and instead of having support in waiting for that ransom, they remain in the trunk; dim, isolated, begging for relief, kicking and screaming to get out; get help and for someone to actually listen. When there is never a response, those broken souls take it upon themselves to put an end to their private mysterious movie which is their life. They don’t think they can handle the next blow, they have been disregarded by doctors, family, friends and in their mind; the world.
Pain messes with your mind. Even those who truly have support; at times feel like an overwhelming burden to everyone, isolated and alone (even if the room is filled with 20 people) and misunderstood, they would rather not be on this earth for one more second of pain or one more feeling of being dismissed by a friend or loved one. That emotional pain alone when one’s suffering is dismissed; as if we are over-reacting to a common cold; could and has triggered people in pain to start planning their demise, as it is too much for them in their broken mind and body to fight anymore. Death, in their mind, however wrong one deems that thought process; is what they are contemplating. If you think this is reaching; just read through posts in some of your or your loved one’s support groups.
Daily, I see people tell people they never met, that they “can’t handle it anymore”, “I just want to end it”. Keep in mind, if you look at their FB page, or Twitter, or recall a recent phone call, most would have just said or posted on how great their day was. “I am fine.” It’s a farce, which most of us continue to do; as to not upset our family or friends with our true feelings and pain, or to not be honest with people we actually know because we’ve been dismissed too many times and are broken to the point that some knowingly make a decision to NEVER again speak to a loved one, hug a family member; and even their own children; as their mind has told them it’s easier to die than live.
How sad is that? Are they selfish? When people take their lives due to pain, any type of pain; they cannot comprehend the ramifications other than they no longer will have pain. So completely torn down, the thought their child will lose their parent, is not strong enough to stop them. How in the hell is our society missing this? How are family and friends missing this? How are people in pain getting to this point? Whether it be lack of treatment, lack of cure, lack of support or the mind games played out in your head when your pain takes over your life; it must, meaning right now, start being addressed.
Are you thinking your life is not worth it anymore? Well, it is. You don’t see it, but others do. And I beg anyone reading this, to reach out to someone. I can almost guarantee these thoughts have gradually entered the minds of your loved one who experiences 24/7 pain; not remembering a day without it. And if someone asks you, be honest. I have uttered the words I’m fine for the majority of my life; over half of which has been in chronic pain. I hid so many things from even my family; out of pride and factors which stem from my childhood, some of my own family do not believe I am in such a state of despair and pain; broken down with a tired soul and body that feels useless. I hid for too long. Yes, it’s my fault for putting on the mask. I was and at times still very good at it. A habit very hard to break.
It’s natural for me to pretend I am okay; for I’ve done it all my life in one way or another just like most of humanity in some aspect. However, I am removing it now and so should you. This does not give us the right to become an un-consolable hot mess of a person; but it does give us power to deal with what is behind the mask; our true selves. It certainly will not be easy, but how worn out are you right now reading this? My soul is tired and there is no amount of sleep in which can awaken it.
“Live without living?” What does that mean? If you ask that question, you have yet to comprehend how our minds work; how we feel & what this has done to us. Or better said, what it has done with the person we once were. The reason I; we’ve gone dim. We strive to live better and we do anything and everything to get there. Find relief, find a new normal, find peace, find understanding, find faith, find God, find a way; find ourselves. I am trying and I have resorted to begging at times just to get a doctor to listen to me. Most ignore it; but I’ve been lucky to find one that listened; one who upheld his oath. One who has promised to help me find a way, a new normal, and a treatment in which I can maybe, just maybe, have a chance at finding myself again. I don’t trust many, but trusted him and have for over 10 years. Due to this trust and mutual respect between a doctor and a patient, I have a chance; a slight flicker of light in my dim world which I am grasping onto so tight, if I were to let go I feel as if I would crumble; again.
You see, although I’ve gone dim like many of you reading this, I also found HOPE and it was due to raising some hell and advocating for myself and not shutting up when I was told NO. I kept going, I kept calling, I kept writing; I kept fighting. I am still dim, but I have seen the flicker of light; that same light which could let “My Soul Shine”. I don’t know if it will, but I’ll be damned if I’m not going to try. I deserve it; as do you.
I started writing this 8 months ago. When I started, I was in my darkest times. I thought about deleting those parts; but that would be me lying to you, and again, as life has taught me, continue to pretend I am okay when I am not. So I hope when you started reading, you felt you were no longer alone in the pain, the dark thoughts, the hopelessness, sadness and you knew, in your heart and soul, there are others like you. And as you read on, you found understanding, a bond with someone you probably will never meet. A bond due to pain, no one wants, but one everyone needs so they don’t feel alone and don’t ever think tomorrow is not worth waking up to.
I’m honored to share this project by chronic illness activist, guest writer Cammie LaValle, featured for CRPS/RSD Awareness Month. She’s not only a personal friend I met in the chronic pain community, but she’s a personal inspiration to me as well as so many others. She leads the charge in fighting campaigns for chronic pain and rare disease causes with the tenacity like none I’ve seen before, whilst attacking her disease with the same vigor. I’m proud to be in the same warrior club with a woman like Cammie, as I have learned much from her. Read more RSD/CRPS articles, see art projects, poems, and survival stories here.
Thank you for visiting and sharing -Mary
Think of the nervous system like a boombox up on your shoulder, 80’s style, playing sweet jams at all times. When the body is healthy, balanced, and running smoothly, the music playing from your system’s radio station are your favorite hits at the perfect volume, and your drop-in harmonies are totally on point.
When the nervous system is out of sync, those beats flowing from your station are tragic- like the song you hate most, on the loudest setting, playing over and over again. You can’t change the station, no matter what lengths you go to!
When you have a chronic neurological condition like Parkinson’s, Multiple Sclerosis, Complex Regional Pain Syndrome, or Postural Orthostatic Tachycardia Syndrome for example, it’s as though someone traded out your cool retro stereo system for an old broken down radio. You can play records on it sometimes, and it’s AMAZING to listen to any music again when you’re not in a flare or a relapse, but even then, all the records have scratches on them, so the music is constantly skipping and warped. The stereo’s wiring gets so bad over time that the record player doesn’t work anymore, and your radio only receives static.
A chronically malfunctioning nervous system is like listening to a broken radio stuck on static at full volume constantly.
When the “music” or the nervous system’s wiring is flowing properly from the brain throughout the body, pain receptors react to appropriate painful stimuli, telling us when there is a problem, and the pain subsides when the problem is resolved. When we have “faulty wiring” we may experience hypersensitivity to touch, sound, light or even smells so intense that it can cause a severely painful reaction. Think of raw wires on the end of electronics sparking and flaming just to the slightest touch.
The malfunctioning nervous system might react to normal stimulus with severe increased pain, increased stress may cause a seizure, or in others severe tremors and body spasms may occur. For some with POTS, (Postural Orthostatic Tachycardia Syndrome), a loud noise or changing positions can cause the body to completely check out, going into fight or flight mode, and beginning to pass out, or passing out completely.
Going back to the stereo analogy, imagine being invited to a party where the DJ had a broken stereo system, playing static on blast or his stereo catching fire in front of everyone. That’s exactly what it’s like to live with a chronic neurological disease…well, sort of.
Meditation, spirituality, organized religion, trying to improve sleep, and other stress reducing efforts are ways we try to turn down the knob on the stereo. Medications, alternative therapies, eating well, surrounding ourselves with positive support are all ways we can continue turning the knob down little by little. The static kicks out on full blast each day, and we use our tools to adjust or manage the incoming noise levels. We may not have the ability to turn the station away from the blaring static and back to music, but we can attempt to turn the volume down so it isn’t blasting constantly every day.
Invasive and surgical approaches to treating neurological diseases are like kicking the side of your stereo to try to get it to work again. Jolting it hard enough may coax the system to finally play music once again, or you might kick it so hard that you completely break your stereo. For many, surgery and invasive treatments are worth a risk of causing additional problems for the possibility of returning to good health and functioning.
That’s my super-scientific explanation of the nervous system, and how it’s exactly like a boom box. So…. this analogy might not end up in a medical school text book, but if it helped anyone better understand an aspect of neurological disease, or put a smile on your face, then virtual high fives all around!
Which sketch is most like you?
This youtuber has other awesome chronic pain videos on her channel. Laugh and learn more about chronic illness all at once!
What is the difference between positive thinking and healthy coping?
“Keep thinking positively!”
“Keep your chin up!”
These are very common cliche responses we hear from society as individuals with ongoing health difficulties. They aren’t incorrect responses, but when those responding seem to believe this is truly how we handle the horrible pain/illness, terrifying future of further health concerns, and crushing regular losses which all come with long-term illness, then encouraging “positive thinking” alone can have quite a negative fallout.
For example, if one is in severe pain (meaning pain worse than a fracture or pain worse than childbirth, but constant, daily, and indefinite) after years, with treatments only failing, and close friends continue to say, “stay positive” as their only source of inspiration, will those words be uplifting over time? No, the attempt at encouragement over time will add to your feelings of isolation, making you feel increasingly deflated, rather than the intention of making you feel more positive, optimistic, and empowered.
Would you say, “suck it up” to a friend who is grieving over the loss of a parent? I certainly hope not. Essentially, this is the idea surrounding “positive thinking.” The concept that the more we “suck it up,” the better off we will be, and the stronger we are.
PS, Our bodies work exactly the opposite of this construct.
The more we avoid pain, the more we distract ourselves from our true emotions (not negative emotions, but real emotions), the more likely our bodies are to feel the stress fallout and rage against us. One with a chronic disease would do well to minimize stress; we know this from immense research (and I can tell you this from my own personal research on chronic pain and chronic illness!).
Minimizing stress is not equal to avoiding difficult emotions or distracting from pain. We have to face our pain and emotions, recognize them, meet them, and accompany them through our lives. They won’t allow us to abandon them, and we know that trying to do so only causes added difficulty down the road.
In Positive Thinking, saying “sure, I’m doing fine” may make others more comfortable temporarily, but it is not necessarily “healthy” for you or for the relationship. Positive Thinking encourages us to become more closed off, in turn others also allow more distance to grow until the relationship diminishes. They realize everything is far from “fine” but both take part in a ritual of pretending everything is wonderful because it’s far more comfortable than confronting the reality.
“Healthy coping… differs from the popular notion of “positive thinking.” It implies the capacity to tolerate and express concerns and emotions not just the ability to put anxieties aside. Being able to discuss the anxieties, uncertainties and fears, losses and sadness that usually accompany severe illness is generally helpful, despite the pressure commonly exerted by family and friends for the patient to always “keep a positive out-look.”25 “Positive thinking” may represent an attempt to avoid confronting the distress of chronic illness, and doctors who care for these patients and their families are not immune to such patterns of coping.” Quote from a study in -Emotional Demensions of Chronic Disease
So often during the course of chronic disease, we have to make choices between the temporary comfort of others, and protecting our own welfare. Regularly, our bodies make that decision for us and force us to miss out. Especially then, healthy coping is paramount! It helps us re-gain some footing again. The openness in healthy coping encourages sharing, allowing others around you to understand where you are, what happened in the situation, how they might play a role in being there for you, and how you can be there for them. It lets others know you aren’t too fragile to listen to them and what they are going through, either. Most likely, those around you are feeling helpless, and would like to be there for you, but don’t know how- or how to ask. Being specific in our needs can help us find our own voice, and being more open also can help others who care about us join in on our “support team.”
Fair warning, most will not know how to respond appropriately, but you may be surprised who is game to see how they can be there for you in big or small ways. In being more open, you may also find that your example sets off a chain reaction in others to become more open with you in how they are doing as well. Healthy coping is so much more contagious than positive thinking, because it encourages support, connection, and community!
Isn’t positive thinking the same as optimism? No. Optimism has more to do with responsibility, letting go of guilt, and looking to the past, present and future without seeing yourself as a burden. I recommend reading the book, Learned Optimism by Martin Seligman.
Healthy Coping differs from Positive Thinking in that healthy coping requires us to lean into our feelings- both physically and mentally. Checking in with ourselves periodically, and then making minor adjustments to our lives to course correct for better balance. This may mean you need more rest, more exercise, more time with friends, another visit to a doctor, see a psychologist, open up to a good friend, eat differently, spend more time focused on your spiritual life, take better care of yourself, etc. Chronic illness requires us to make these adjustments frequently instead of thinking everything is going to work itself out until the ignored symptoms or stress build up. Healthy Coping may be the more deliberate, mindful path, but it is the path of self care instead of conveying a false smile.
To start making these adjustments, we can ask, “How are you?” instead of “Are you ok?” A yes or no question forces us to choose only negative or positive, however, healthy coping encourages others to share and touch base with one another and ourselves- this is how support and compassion are built. We don’t have to choose sides in healthy coping. Try not to think of your days as being good or bad, black or white, suffering or overcoming, but instead- working to find balance every day, always learning from your body and those around you, and doing the best you can now, in this moment.
To be thankful while you are suffering is one thing, but to be thankful for suffering….
Once in a while in the support group I administrate, there is someone who makes a statement that is so powerful, it catches me off guard and it sets my soul on fire. In truth, this isn’t a rare occurrence. I guess you could say that those suffering so deeply every single moment of the day have some profound insights to share. One thing that inspires me the most is when people say they are thankful for their illness. That is a bold statement that I believe one would never come to lightly- and no one would EVER openly say something so provocative in a support group setting among a band of individuals with severe chronic diseases, unless they truly meant it. That’s why it always gives me pause whenever I hear such powerful expressions.
It’s not unusual for those who go through a near death experience or a serious short term illness to find deeper meaning and purpose. It’s no less real, but it is more common when the storms have an end, and suffering can be left behind. While it’s not rare for those with ongoing illness to eventually find new ways to appreciate life again, to say they are grateful for their illness, it is so much more rare in cases of chronic disease. Why? Because an illness that is daily, constant, and does not see an end- is far easier to hate than to get excited about. A condition which may be degenerative, becoming more painful and physically or mentally compromising over time, isn’t easily beloved…as you can imagine. To me, it’s almost a miracle hearing that anyone would be happy or thankful that they became so sick. Others with chronic illness can find statements like these offensive, even. These ideas of “illness gratitude” certainly border on the extreme, but make one wonder where their personal journeys have lead them to truly embrace their infirmities.
I’ve heard people claim to be thankful they are in pain and chronically ill because it transformed their lives. It made them see the world in a different light. Their conditions allowed them to shake off the clutter and stress of a life that they realized didn’t have substance, and focus on a life of greater meaning and value. They once believed losing their career meant losing their purpose, but I’ve spoken to those who say that they are so thankful they became ill because now they found their true calling. Some have said that their new life of chronic illness has enabled them to be there for people in ways they never could have in their “healthy” life, so they are forever thankful for their new sick bodies, and how useful they can be to others through deeper compassion and connection. Sometimes people are grateful they are in pain because it has brought them closer to their faith, and they cherish a higher spiritual connection they never could have had without constantly being pushed to the edge of what they can endure. They are forced to cling to God instead of their own strength, and in that comfort, they find gratitude for suffering that brought them more enrichment spiritually.
Again, these are extreme statements, but thought provoking and inspiring nonetheless!
Most often, people I encounter long for a cure or pray to be healed. That’s normal, and that’s not at all unhealthy. Research in psychology equates the loss of health or a limb to losing a family member or spouse passing away. It’s earth-shattering. The losses just keep coming. With chronic illness, the grief starts over again and again. It’s cavernous, and there’s no end to the emotional roller coaster or the physical fight. Hoping for a cure, for healing, or for remission is what we all are desperate for, and that focus can at times become crucial for survival. But for some of us, restoration of health becomes a worship in itself, and begins to supersede everything else. Seeking a cure or healing can become such a focus that illness becomes nothing but a betrayal of God, of government, of doctors, and family. Nothing feels real except wellness and full restoration.
Obviously these are 2 opposite sides of the spectrum, and balance is always the goal.
When I was diagnosed at 22, I spent the first years asking God WHY? Staying up every night in excruciating pain, my leg felt as though it was breaking, nerves like being electrocuted and burning pain like nothing I could have ever imagined before. Full body spasms, tremors, the room spinning, my heart racing and palpitating, wondering how I had planned and worked so hard for everything that had lead me here, just to lose it to this “incurable degenerative” condition that no one seemed to be taking very seriously to help me try recover from. It didn’t make any sense. As much as I tried to analyze it, I couldn’t crack the code. It only made sense for me to get better, so I searched for my panacea, and prayed (demanding) that God must heal me. At the time, I wasn’t a big prayer person, but illness has a way of connecting you to your higher power. In the Bible, yes, there is healing, but there is also so much pain. The importance of learning through pain, finding ways to share strength or comfort inside of infirmities, these are scriptures that have been so encouraging to me.
I eventually felt lead to make a decision. I believed God would heal me, and I still do believe that is true. But, I decided that if I was going to spend any period of time living a “sick life” I was going to explore it. As much as I was desperate to go back in time, moving forward is all I could do, it’s all any of us can do- Even if it’s slowly, frightened, and with tears in our eyes.
I cannot go as far as saying that I am thankful I am chronically ill. I can say that at almost 12 years, I’m so grateful I made that decision to press forward and try to find myself inside of this life. If I had stayed so distracted by my past, or so focused on what I might be losing in the future, I would have missed every bit of the beauty, the miracles, the blessings, the generosity of others, the opportunities to be of use, and purpose found inside of this pain.
More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us. Romans 5:3-5
I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong. 2 Corinthians 12:10
For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us. Romans 8:18
When the cares of my heart are many, your consolations cheer my soul. Psalm 94:19
After sharing the original Sick Lives Matter, I’ve been surprised and grateful for the response of the piece! However in response, some said, it’s too late for change. Some responded that we are too far down this path of patient neglect in healthcare, and there is no returning from it now. But I believe it is just the right time for us to rise up. I’m not alone either, with online patient forums like Patients Not Addicts gathering to influence legislation in Washington DC, advocacy groups like Give Pain a Voice, pain organizations working to change the stigma of pain patients, and so many private individuals sharing their stories wherever the universe allows, we ARE in the middle of a revolution. Are you part of it?
How can we rise up when so many of us can’t even work? How are we supposed to change policy when doctors and family don’t seem to listen? How can we make an impact on the future when many of us are struggling to care for ourselves? These are the reasons we HAVE to do something about it.
Consider cancer patients. In the last 10-15 years, the treatment of cancer has turned around because cancer patients joined together and created a movement. Everyone knows Susan G. Komen represents Breast Cancer Awareness because hard working cancer patients were able to get big organizations to stand behind their cause. Years ago, minorities with cancer were being ignored, rare cancers were going undetected, and people were terrified of finding out they could have any form of cancer because there were so few options- and you were likely too late anyway. Now, we have cancer treatment centers popping up all over the country, treatments that are actually successful at sending cancer into remission, and celebrities who bravely share their cancer experiences with the public.
Consider HIV/AIDS. As recently as 15 years ago, HIV was still a death sentence. Celebrities may have been wearing red ribbons, but people were still dying so quickly, suffering in silence, and had little recourse. Not only did society brush off the disease as a punishment- so did healthcare professionals (#STIGMA). Now, not only is there awareness, there is a culture of S.T.D. prevention and regular testing. When the worst happens, and someone is diagnosed, life is not over, people are living long lives because they have treatment and accessible management. Educated HIV doctors aren’t rare, and medication is becoming more affordable (although there is still a ways to go in regard to RX coverage).
HIV patients knew something about being brushed under the rug of society and healthcare, and paying for it with their lives. They changed the game by telling their personal stories so that those who tried could not look away! They joined together for a united cause, and chronic illness survivors can look to their bravery for inspiration.
I dream of emergency rooms where doctors and nurses treat chronic pain patient’s emergencies as high priority as everyone else’s. I see a future of chronic disease treatment centers around the country. I envision home visit physicians covered by insurance. I imagine the homebound and bedbound having access to quality patient care and mental health care from home, covered by insurance. I pray for research facilities searching for a vaccine to end degenerative neurological pain diseases. I see a world in which sudden deaths from unmanaged pain, and suicides from under-managed pain are a heartbreaking thing of the past. Is under-treated chronic illness a sign of the end times we are meant to accept with apathy, or is there something we can do from our sick beds and wheelchairs to make a change? We can be the ones who flipped the script for future chronic patients, young and old. This can be the moment you decided to take a stand. What is your dream?
Your life matters. Your story matters. Your voice matters.
To share your story or to learn how you can get involved in advocacy online, email firstname.lastname@example.org
Because of my chronic monsters, the upcoming “Miracle Day”(aka wedding) will require some special technology. I’ve been prepping for about a year, and have done some research to quiet my critters. Would you like to see some of the gear I’ve found?
Even though I am still uncertain how my body will react at the wedding and how long all of my issues (see my about page for specifics) will allow me to stay at the ceremony, having this “armor” makes me feel more ready to attempt this ‘impossible’ feat. I know everything will be in the red zone, but my sister is counting on putting eyes on me when she is at the alter. She needs me there, so these little gadgets are going to add minutes to my miracle- and some extra minutes are all we need, baby! A good friend of mine thesickdiva blog said she’s praying my endorphin’s will kick in and I’ll be there for an hour instead. That would be amazing! Thank you, Jenny!
Ear plugs– I have so many different kinds. I usually use the soft foam kind for comfort. PS, these come in many sound-blocking capacities. But for this special occasion, I’ve purchased Decubulz which have the highest NRR available. I have yet to mold and fit them, which will take help, and boiling water, so we’ll see if they work as well as advertised. I’ll let you know how they work out.
Headgear– Bose wireless sound canceling headset has been on my wishlist for a long time. They have been such a blessing since the holidays! (Thank you Aunt Darlene.) I don’t know how I ever lived without them. Before, I was using gunrange type headgear, and they were not only very tight and painful, but they didn’t offer much sound protection. The Bose are the best sound protection available, and much more comfortable resting on my neuropathic head and face. I like that I can wear them as needed, and then I can flip the switch on the side for the sound blocking feature before my head explodes. It helps turn down the pain and some of the fight or flight sensory overload symptoms. I wish it blocked out all sound, but they are a big improvement over any other headset I’ve tried.
Theraspecs Sunglasses– I did a great deal of research on migraine reducing shades before deciding. Many of my friends have prescription eye wear for light sensitivity, but a physically wearing trip to a new doctor plus lights being shone in my eyes for new specs was off the table for myself, though if you are reading this with headache disorders triggered by light, prescription shades is one of the options. I was relieved to find there are many kinds of shades to choose from. My friends said to look into Serengeti shades, sporting eyewear, and rose tinted lenses. I did. I soon found this company, Theraspecs, which was started by a woman whose severe migraines are brought on by light. She and her husband make lenses with several kinds of filters, (including FL41) and will even custom make your shades if you send in your favorite frames (winning!). Since getting mine from Theraspecs, I notice a big difference in screen brightness from my laptop, Kindle and phone. I’ve yet to try them outdoors, but I’ll be giving them a spin in a couple of evenings! My Aunt also got a pair of theraspecs custom made, so we will give you an update on head pain reduction. We were both very impressed with the level of communication from the company, and customer service.
Bride’s Maid Dress– We were told to pick our own dresses (with criteria). I absolutely love the one I found. As you can imagine, I have not purchased any (non-pajama) clothing for a very long time. I’m so excited to wear it! I haven’t worn makeup in quite a while, either and found some fab red lipstick that I hope will accentuate my pale…ehem porcelain complexion. (The sale price is not what I paid.) ASOS is one of my favorite online clothing shops for gifts and “lounge wear.” Here are one of my accessories that I’m excited about wearing as well; it’s both functional and fabulous. If anything else, I will be put-together on the outside! (wink)
Reclining Wheelchair– Such exciting news!!! Even though last week was one of the worst in a long time (that’s saying something folks!), this wheelchair was such an amazing gift to my life! I’m so stoked about this! Thank you for celebrating its arrival with me, and allowing me to share it with you all!!! My reclining wheelchair was not only approved by insurance, it was already delivered! Isn’t she pretty? We usually have to rent one, and now, we have one for keepsies. As I’ve shared here before, my Postural Othostatic Tachycardia Syndrome (POTS) only allows me to sit or stand upright for a couple short minutes before going into Pre-syncope (starting to get sick and pass out). But if I’m in a reclining position, my POTS will stay in check. That is a huge relief! If I am forced to be upright for more than I can tolerate, my health can go into a setback for a while. I know this wheelchair will be an awesome step forward on my journey, and hope it leads to great progression for my life! (If your insurance has not approved your chair, try Invacare on Ebay for new, inexpensive, high quality chairs with free shipping.)
Nurse/ home health aid– I’ve had a home health aid come every week for the last several months (game-changer), and she will be assisting me at the wedding. Because of her help, no one in my family will be distracted by me, and they can focus on my sister and the wonderful event
! A great relief to both me and my sister. When I told my sister my aid would bring me to her wedding, I could tell it lifted a weight off of her shoulders. This newer aid has never taken me out of the house, so I admit that I am anxious about that. My ex-husband is really the only person who was fully aware of all of my transport issues and needs when we would attempt to go to doctor’s appointments. I’m putting a lot of trust in her professional ability and experience with other patients. She hasn’t failed me yet!
Blood pressure cuff– This is just my boring reliable old blood pressure cuff from Walgreens. We got it way back in 2011 when my one monster (RSD) invited a whole crew of critters to the party. I don’t sit around measuring my BP for kicks, but we’ll bring it along in the car just in case.
Though I wish I had a temperature controlled, sound-proof bubble I could participate in the wedding through, I can only prepare so much. We’ve been planning for over a year, I’ve been in physical therapy for months, and I have every item to make my body as cooperative as it will get. If I had not gone through all I did this past year, I don’t know if I would be ready for this day. That is a ray of sunshine coming through these clouds because I love my sister more than anything.
Just as my sister is planning all of the details to make the day as beautiful and memorable as possible, I’m planning for a smooth event as well. We can’t approach it with fear. No day is perfect, but how we enter into it mentally can change the memory completely. For me, the truth is that it will be painful and frightening. I will have to recover for a while afterward. If I can go to be present for their vows between 10-20 minutes, that would be so incredible! It will be a triumph and so precious to be there supporting my sister, her soon to be wife and our families.
I’m so honored and privileged to be her maid of honor. It has been a joy to contribute to her wedding in my own ways. I have some little surprises for her and her bride for the day of, which I’m getting excited for. It has been very difficult, sometimes heartbreaking (for both of us) not to be involved like I would be, like I SHOULD be. That river runs deep for us both, but more importantly, so does our relationship. For the ceremony, I don’t know if anything could stop me from being there in any way I could be. She is my heart. Of everything that has gone on in my own life in the last few years, wedding planning has been such a bright light I am so grateful to be included in. See you on the flip side! Thank you for rolling along with me.
There are many things you can forgive your body for, but there are moments, relationships, days in life you miss which you will never get back, unforgettable, unforgivable events you are denied in the face of disability. My body is broken, and she continues to break my heart.
This is how those of us with chronic diseases struggle so deeply to have “self love.” Trapped inside bodies that attack us, and hearts which shoulder the guilt of our loved one’s pain from the hurt our illnesses have caused- child, love thyself. Love your abuser. Forgive the one which harms those you love the most. Forgive, forgive, forgive….
Body, you have taken my choices from me all of my adult life. Body, you are the abusive relationship I have never been able to flee. Body, you have stolen my health, my career, fun, freedom… my dreams. No permission was granted to you, yet you take all you touch. You are a jealous, volatile disease, and you only care about your own needs. I have suffered abuse and trauma at the hands of doctors on your account, though, you still batter me without compassion. I’ve been abandoned and made to feel worthless, INVISIBLE because of you body; I’ve had enough of your games!
Body, I break up with you. Sorry, not sorry.
I tear you from my being and leave you. I will still care for you, because I am obligated. I am bound to you in ways I cannot choose, but I will not love you. I will not call you my own. We are committed to one another, but I turn my back to you, body. You from here on out, you will be “Body” and I will go forward being me. This is my self love. This is my self compassion. This is my choice.
I rage against your victimization. Your assault on my essence is over. I choose to make my life despite you, in spite of you. I choose, I choose, I choose. My flesh and bone surrenders, but my spirit rises up! Your reign, your emotional and psychological torture is over. Call it dissociation, call it compartmentalizing call it what you will- it IS a detachment, and it is necessary.
I sign the papers and I box up your things. You can live in the basement and I will now and forevermore preside upstairs, in charge of THIS HOUSE.
X A Body of Hope
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