Mikhaile Spence

@mikhailespence | contributor
I was diagnosed with fibromyalgia and chronic fatigue syndrome at the age of 25, and have struggled with migraines, depression, IBS, and anxiety my whole life. Despite the challenges, I still believe in the power of positive thinking, that love wins, and that you should fight to live the kind of life you deserve. Life is a journey and we all have much to learn, not only from our own experiences, but also from our fellow travelers.

How Trauma From Childhood Abuse Gave Me Chronic Illness

I sat there in his office, waiting. I was suddenly nervous and had to take a few deep, calming breaths and a sip of water. You see, I have been determined to be right where I am for months and have pushed for a successful referral to confirm what I and my primary care physician suspect: I have fibromyalgia. “Well, unfortunately, I know exactly what you have,” the doctor says as I flinch and pull away from where his fingers are pressing on my tender points throughout my body: my arms, my shoulders, my neck, my poor legs. The pain, it takes my breath away. I know what he’s going to say next and I had prepared myself. “You have fibromyalgia syndrome. Just that test alone and going over all the other previously run tests that were negative for everything else, I have no doubt.” I just nod and said, “I figured.” The next thing is telling me what I already know is true as well. There is no cure. And not a lot of treatment options. It won’t kill me though; there are just going to be days I may wish I could die. Life could be worse. The thing was, life was worse for many years. The majority of my life I was in a constant state of abuse, of my survival instincts always being triggered. I was always ready to fight, fly or be stuck, unable to move, so afraid. Adrenaline to help me protect myself was consistently flowing through my body, my muscles and my brain. Back to my doctor, though. I’m still sitting there, clasping my hands together as I force myself to hold his stare. “We know the cause of this illness for you. It’s the post-traumatic stress disorder (PTSD). Whatever traumatic event you experienced, gave you this,” he goes on. This is the hardest part for me. Instantly, I feel the need to catch a breath as the air in my lungs was just sucked away. Logically, I know he’s right, although I don’t correct him and say it’s many traumatic events that have gotten me to this point, not just one. But in my heart, well, it’s shattering into a million pieces. All over again. I suddenly feel the need to hide and curl up in bed, but inevitably, I know this is just going to make the pain worse. I start remembering when the pain was worse, part of the prelude to the me today. I recall huddling on the floor in a corner of my room while arguments occurred downstairs. With each scream, my body tensed and my tiny forehead dug further into my skinny knees. As a teen, I would press my back against the wall, trying to become a part of it as I tried to dodge the slaps. I still find myself instinctively shrinking my form, trying to disappear if I sense confrontation. And as an adult, I vividly remember aching in every muscle and bone, inwardly pleading for those long services to end in the controlling and religiously abusive community I was born into. Every time the preacher screamed, my brain sent adrenaline kicking in, ready to run; but I couldn’t move or leave my pew. It went against the rules and I would be shamed. My body tensed, keeping me grounded to my seat. The nightmares for years later left me in the fetal position for hours, tensed, locked, unable to relax. I spent days at a time either in bed or on the couch, weak as can be afterward. I always battled them alone, told myself that was then and this was now. Tough it out, don’t give in. You’re not there anymore. But my brain thinks I still am. My brain, the very thing responsible for how I function is wired differently than those who didn’t experience trauma. You see, trauma can change the human body. And just like a traumatic event, there is your body before it and your body afterward. In my case, there has always just been a body acquainted with trauma. Childhood abuse saw to that. I may be an adult, but a lot of times my brain interprets my life now as still being that terrified little girl, tensing and crying myself to sleep as I was curled up in ball similar to those long nights of nightmares years later. “Above all, you have got to work on the PTSD. You would not be sitting here today in my office, in pain, if it wasn’t for that. While all the other treatment suggestions can help, the most important is working on rewiring your brain.” I nod and agree with the rheumatologist, stating I have that covered with my therapist. He seems satisfied and our visit comes to an end after a bit more discussion on my treatment plan. Walking out of that honestly dreary decorated office, I take a moment to catch my bearings. I need to absorb this news, but I’m also scared to do so. A thousand different emotions hit me at the same time. I can feel the overwhelm sneaking up and I do not want to break down here, in public. So, I shove the emotions back down, trying to lock them in a corner of my mind. Let them sit there for a few moments until I feel safe to explore and address them. Off and on though, they demand to be acknowledged, impatiently waving their arms in a show of defiance. It’s like those who abused me found just another way all these years later to line up one by one and punch me in the face all over again. I feel like in some ways, they won. They wanted to hurt me. The pain they inflicted, I can still feel all these years later. My body feels dirty in this moment, vividly imagining each and every one of my abusers smirking and shrugging off their abusive role in damaging my brain in the first 21 years of my life and giving me a chronic illness that will last my entire lifetime. After the appointment is over, I find myself at the ocean. I haven’t been here in years. I had considered earlier that morning visiting it after seeing the doctor at the beginning of my day. By afternoon, it was pretty obvious I needed to. In that moment, I needed beauty and nature, a distraction and reminder joy is something that still brightens my day regardless of fibromyalgia and the PTSD that gave it to me. I craved some healing the ocean, sand and sky offered. I gained a bit of perspective, too. Those who hurt me may have given me this pain, but I was the one who fought to overcome it as that scared child who testified in a courtroom, “Yes, he hurt me,” And, “No, I never asked for it.” It was I who left the only world I knew when I walked away from my religiously abusive past faith. Those who harmed me may have tortured my mind, but I’m the one who put one foot in front of the other and reached out for help to heal it. I have always pushed through. One way or another, I’ve made it beyond one horrible time after another. I’m not at the point of full acceptance yet (if that’s even possible). I’m just trying to absorb this reality and the fact I didn’t have to have this chronic illness or the pain that comes with it on a daily basis. We don’t get to pick our trials, though. We only get the choice to fight them. I struggle knowing a lot of things, but one thing I do know … I’ve always had the fight in me.

How Trauma From Childhood Abuse Gave Me Chronic Illness

I sat there in his office, waiting. I was suddenly nervous and had to take a few deep, calming breaths and a sip of water. You see, I have been determined to be right where I am for months and have pushed for a successful referral to confirm what I and my primary care physician suspect: I have fibromyalgia. “Well, unfortunately, I know exactly what you have,” the doctor says as I flinch and pull away from where his fingers are pressing on my tender points throughout my body: my arms, my shoulders, my neck, my poor legs. The pain, it takes my breath away. I know what he’s going to say next and I had prepared myself. “You have fibromyalgia syndrome. Just that test alone and going over all the other previously run tests that were negative for everything else, I have no doubt.” I just nod and said, “I figured.” The next thing is telling me what I already know is true as well. There is no cure. And not a lot of treatment options. It won’t kill me though; there are just going to be days I may wish I could die. Life could be worse. The thing was, life was worse for many years. The majority of my life I was in a constant state of abuse, of my survival instincts always being triggered. I was always ready to fight, fly or be stuck, unable to move, so afraid. Adrenaline to help me protect myself was consistently flowing through my body, my muscles and my brain. Back to my doctor, though. I’m still sitting there, clasping my hands together as I force myself to hold his stare. “We know the cause of this illness for you. It’s the post-traumatic stress disorder (PTSD). Whatever traumatic event you experienced, gave you this,” he goes on. This is the hardest part for me. Instantly, I feel the need to catch a breath as the air in my lungs was just sucked away. Logically, I know he’s right, although I don’t correct him and say it’s many traumatic events that have gotten me to this point, not just one. But in my heart, well, it’s shattering into a million pieces. All over again. I suddenly feel the need to hide and curl up in bed, but inevitably, I know this is just going to make the pain worse. I start remembering when the pain was worse, part of the prelude to the me today. I recall huddling on the floor in a corner of my room while arguments occurred downstairs. With each scream, my body tensed and my tiny forehead dug further into my skinny knees. As a teen, I would press my back against the wall, trying to become a part of it as I tried to dodge the slaps. I still find myself instinctively shrinking my form, trying to disappear if I sense confrontation. And as an adult, I vividly remember aching in every muscle and bone, inwardly pleading for those long services to end in the controlling and religiously abusive community I was born into. Every time the preacher screamed, my brain sent adrenaline kicking in, ready to run; but I couldn’t move or leave my pew. It went against the rules and I would be shamed. My body tensed, keeping me grounded to my seat. The nightmares for years later left me in the fetal position for hours, tensed, locked, unable to relax. I spent days at a time either in bed or on the couch, weak as can be afterward. I always battled them alone, told myself that was then and this was now. Tough it out, don’t give in. You’re not there anymore. But my brain thinks I still am. My brain, the very thing responsible for how I function is wired differently than those who didn’t experience trauma. You see, trauma can change the human body. And just like a traumatic event, there is your body before it and your body afterward. In my case, there has always just been a body acquainted with trauma. Childhood abuse saw to that. I may be an adult, but a lot of times my brain interprets my life now as still being that terrified little girl, tensing and crying myself to sleep as I was curled up in ball similar to those long nights of nightmares years later. “Above all, you have got to work on the PTSD. You would not be sitting here today in my office, in pain, if it wasn’t for that. While all the other treatment suggestions can help, the most important is working on rewiring your brain.” I nod and agree with the rheumatologist, stating I have that covered with my therapist. He seems satisfied and our visit comes to an end after a bit more discussion on my treatment plan. Walking out of that honestly dreary decorated office, I take a moment to catch my bearings. I need to absorb this news, but I’m also scared to do so. A thousand different emotions hit me at the same time. I can feel the overwhelm sneaking up and I do not want to break down here, in public. So, I shove the emotions back down, trying to lock them in a corner of my mind. Let them sit there for a few moments until I feel safe to explore and address them. Off and on though, they demand to be acknowledged, impatiently waving their arms in a show of defiance. It’s like those who abused me found just another way all these years later to line up one by one and punch me in the face all over again. I feel like in some ways, they won. They wanted to hurt me. The pain they inflicted, I can still feel all these years later. My body feels dirty in this moment, vividly imagining each and every one of my abusers smirking and shrugging off their abusive role in damaging my brain in the first 21 years of my life and giving me a chronic illness that will last my entire lifetime. After the appointment is over, I find myself at the ocean. I haven’t been here in years. I had considered earlier that morning visiting it after seeing the doctor at the beginning of my day. By afternoon, it was pretty obvious I needed to. In that moment, I needed beauty and nature, a distraction and reminder joy is something that still brightens my day regardless of fibromyalgia and the PTSD that gave it to me. I craved some healing the ocean, sand and sky offered. I gained a bit of perspective, too. Those who hurt me may have given me this pain, but I was the one who fought to overcome it as that scared child who testified in a courtroom, “Yes, he hurt me,” And, “No, I never asked for it.” It was I who left the only world I knew when I walked away from my religiously abusive past faith. Those who harmed me may have tortured my mind, but I’m the one who put one foot in front of the other and reached out for help to heal it. I have always pushed through. One way or another, I’ve made it beyond one horrible time after another. I’m not at the point of full acceptance yet (if that’s even possible). I’m just trying to absorb this reality and the fact I didn’t have to have this chronic illness or the pain that comes with it on a daily basis. We don’t get to pick our trials, though. We only get the choice to fight them. I struggle knowing a lot of things, but one thing I do know … I’ve always had the fight in me.

What It's Like to Relive Trauma in Your Sleep

Everything that’s gone on in the last four to six weeks has left me feeling a bit on edge and really destroyed my sleep for the last three or four nights. I’ve fallen asleep in my living room chair only to find myself feeling restless and hypervigilant when I get in bed. I toss and turn for two to three hours, then fall into a light sleep, riddled with strange, mostly incoherent dreams, unrelated to any trauma I’ve experienced. So I wake, unrested and edgy. Last night or this morning, the same pattern played out, but after the first bout of odd, disjointed nonsense dreams, I had a very vivid, clear and altogether too realistic dream that triggered the heck outta me. Everything was crystal clear. I could smell the person at the center of my fear. The laundry detergent he’d washed his shirt in, cologne, remnants of cigarette smoke. And he was right in my face, menacing and delivering a tidal wave of threats and verbal abuse . I was alone. I saw friends and family, tried to ask for help, but was dismissed. No one took me seriously, listened or tried to help. I woke up in a cold sweat, hyperventilating, with my pulse racing and throbbing loudly in my ears. My whole body was shaking. Even after I opened my eyes, it took several minutes to orient myself and realize where I was, when it was. I reached for the dog (yes, she sleeps in my bed — and this is why). She is warm and soft and breathing steadily, and she calms me, helps me to ground myself in the present. “He’s gone and you are safe,” I say to myself over and over, willing my body and mind to believe it. I step into the shower, even though I took one right before bed last night. I make the water as hot as I can stand and tell myself, “You’re here now. He is gone and you are safe.” I feel numb, and somehow very far away. Two or three hours later, and I still feel as though I’m shaking like a leaf. But I’m not. Not on the outside, anyway. My insides feel like jello in an earthquake, but outside I’m steady as an ox. My hands are steady, makeup’s done, I’m dressed for the day, and I hear myself talking to people as though everything is perfectly “normal.” But, given just a few seconds too many to myself, my breathing quickens and I have to fight back the tears that well up for reasons I don’t even fully understand. It’s 9 a.m. and I’m exhausted. The moral of the story: Be kind, for everyone you meet is fighting a battle you know nothing about.

A Small Change in Routine Has Major Consequences for Chronic Illness

Frustrated. Anxious. Exhausted. That’s how I feel today. Spent too long of a day in the office yesterday and it definitely came back to haunt me: It took me my usual hour-plus or so to decompress at home after work, but that meant I couldn’t sleep until more than an hour past my usual bedtime. Didn’t sleep well at all. I was restless and woke several times during the night because of terrible pain in my neck and shoulder. I disappointed myself at the gym this morning. I don’t know if it was the lack of sleep or the pain or both, but I definitely felt less than 100% and I could see it in how I performed. Then, I nearly passed out post-shower this morning. Ended up having to get back in bed, where I slept like a rock until two hours later, when I finally had the will to get myself out of bed and dressed for work. (Fortunately, my morning gym time is early enough to make a two-hour morning “nap” an option.) Unfortunately, I beat myself up for “wasting” that time sleeping. I got to the office roughly an hour and a half later than usual. I had let them know I would be late via text messages, but no one responded. Felt conspicuous. My usual infusion of caffeine from my green tea and pre-workout energy booster did literally nothing for my overall mental haziness and physical fatigue. Each task I’ve completed today has taken longer than anticipated and longer than usual. Brain fog means I process things more slowly and am more prone to make mistakes, which, in turn, means I have to double and triple-check every single thing. It’s the mental equivalent of swimming through mud — painfully slow and requiring an enormous amount of effort. I will leave work today having accomplished less than I hoped, because regardless of what is or isn’t done, I know I will have to leave at the stroke of 5 p.m. to avoid compounding the issue I had today and missing any more time this week. Leaving early won’t alleviate the exhaustion, just prevent it from worsening. I’ll have no energy to fix myself a decent meal tonight, so will end up eating something pre-prepared and quick (Taco Bell drive-thru, here I come!). Stopping at the drive-thru to get burritos will mean when I get home — just a little bit later than I would have otherwise — I’ll feel rushed and impatient, trying to get the dog walked, animals fed and myself showered before I crash. There have been times the clock has run out and I wind up having to lie down with a cool rag on my head because of a splitting headache and because I am so nauseous and dizzy from the exhaustion and pain. I’ll push myself harder and faster than I should, trying desperately to avoid that worst-case scenario. If my stomach is less than thrilled with my dinner choice (because my GI system likes to get in on the fun of the chronic inflammation that affects every other part of my body), it will rebel and I will be up past my bedtime yet again, waiting for it to settle so I can lie down without getting nauseous and without having to make multiple runs to the bathroom. I’ll be frustrated and long for the release of journaling, which was once my common practice. But holding a pen to write for much longer than five minutes makes my joints ache and causes muscle spasms in my hand that make it impossible to continue. All of this because I stayed to help a co-worker instead of leaving at my usual time. And I worry. I worry people will mistake my insistence on leaving “on time” for laziness or ambivalence. I worry they don’t believe me when I say I will pay for something as simple as staying at the office for an extra hour and a half.  I worry they’ll think I’m exaggerating or looking for attention. I worry they don’t understand just how chronic a chronic illness can be, that they’ll think I’m just a negative person who is always sick, sad, slow or hurting because I have a “lousy attitude.” I worry they’ll think I’m not a team player or I shirk my responsibilities. I worry I’ll be accused of taking advantage of the situation somehow and I won’t be able to counter that argument. Most of all, I worry this is the time the flare never dies down, that it’s just the decline into a “new normal.” And so, I am mentally and emotionally exhausted, too — on top of the physical. I wish there was some way to allow people to experience what I feel in my body every day, but especially on bad days. I know there are pregnancy bellies and machines that can simulate labor contractions, so why not something to simulate the reality of a chronic invisible illness? A weighted body suit that constricts around random muscles at random times, features bullet-shaped protrusions that press into all the most sensitive areas of your body and occasionally delivers a painful electric shock in some random spot, lasting anywhere from two to 90 seconds. Added bonus points if they make a matching weighted headpiece that puts your skull in a permanent vice grip, making it hard to turn your head, see or think straight. And the finishing touch? Take an extended-release dose or two of an antihistamine or cough medicine that makes you feel drowsy enough you want to cry and can do nothing but think about how much to want to lie down – all day long. I’m envious of those who don’t understand, but not bitter. There are just days — like today — I am so tired of fighting it. I know unless you have to live with this, there is no way for you to comprehend the overwhelming struggles. That’s OK. It’s making me feel “less than” or shamed for the fact I don’t always win over my body that isn’t. So please, don’t minimize pain or invalidate my truth when I share it. As the quote says, “Be kind, for everyone you meet is fighting a battle you know nothing about.”

A Small Change in Routine Has Major Consequences for Chronic Illness

Frustrated. Anxious. Exhausted. That’s how I feel today. Spent too long of a day in the office yesterday and it definitely came back to haunt me: It took me my usual hour-plus or so to decompress at home after work, but that meant I couldn’t sleep until more than an hour past my usual bedtime. Didn’t sleep well at all. I was restless and woke several times during the night because of terrible pain in my neck and shoulder. I disappointed myself at the gym this morning. I don’t know if it was the lack of sleep or the pain or both, but I definitely felt less than 100% and I could see it in how I performed. Then, I nearly passed out post-shower this morning. Ended up having to get back in bed, where I slept like a rock until two hours later, when I finally had the will to get myself out of bed and dressed for work. (Fortunately, my morning gym time is early enough to make a two-hour morning “nap” an option.) Unfortunately, I beat myself up for “wasting” that time sleeping. I got to the office roughly an hour and a half later than usual. I had let them know I would be late via text messages, but no one responded. Felt conspicuous. My usual infusion of caffeine from my green tea and pre-workout energy booster did literally nothing for my overall mental haziness and physical fatigue. Each task I’ve completed today has taken longer than anticipated and longer than usual. Brain fog means I process things more slowly and am more prone to make mistakes, which, in turn, means I have to double and triple-check every single thing. It’s the mental equivalent of swimming through mud — painfully slow and requiring an enormous amount of effort. I will leave work today having accomplished less than I hoped, because regardless of what is or isn’t done, I know I will have to leave at the stroke of 5 p.m. to avoid compounding the issue I had today and missing any more time this week. Leaving early won’t alleviate the exhaustion, just prevent it from worsening. I’ll have no energy to fix myself a decent meal tonight, so will end up eating something pre-prepared and quick (Taco Bell drive-thru, here I come!). Stopping at the drive-thru to get burritos will mean when I get home — just a little bit later than I would have otherwise — I’ll feel rushed and impatient, trying to get the dog walked, animals fed and myself showered before I crash. There have been times the clock has run out and I wind up having to lie down with a cool rag on my head because of a splitting headache and because I am so nauseous and dizzy from the exhaustion and pain. I’ll push myself harder and faster than I should, trying desperately to avoid that worst-case scenario. If my stomach is less than thrilled with my dinner choice (because my GI system likes to get in on the fun of the chronic inflammation that affects every other part of my body), it will rebel and I will be up past my bedtime yet again, waiting for it to settle so I can lie down without getting nauseous and without having to make multiple runs to the bathroom. I’ll be frustrated and long for the release of journaling, which was once my common practice. But holding a pen to write for much longer than five minutes makes my joints ache and causes muscle spasms in my hand that make it impossible to continue. All of this because I stayed to help a co-worker instead of leaving at my usual time. And I worry. I worry people will mistake my insistence on leaving “on time” for laziness or ambivalence. I worry they don’t believe me when I say I will pay for something as simple as staying at the office for an extra hour and a half.  I worry they’ll think I’m exaggerating or looking for attention. I worry they don’t understand just how chronic a chronic illness can be, that they’ll think I’m just a negative person who is always sick, sad, slow or hurting because I have a “lousy attitude.” I worry they’ll think I’m not a team player or I shirk my responsibilities. I worry I’ll be accused of taking advantage of the situation somehow and I won’t be able to counter that argument. Most of all, I worry this is the time the flare never dies down, that it’s just the decline into a “new normal.” And so, I am mentally and emotionally exhausted, too — on top of the physical. I wish there was some way to allow people to experience what I feel in my body every day, but especially on bad days. I know there are pregnancy bellies and machines that can simulate labor contractions, so why not something to simulate the reality of a chronic invisible illness? A weighted body suit that constricts around random muscles at random times, features bullet-shaped protrusions that press into all the most sensitive areas of your body and occasionally delivers a painful electric shock in some random spot, lasting anywhere from two to 90 seconds. Added bonus points if they make a matching weighted headpiece that puts your skull in a permanent vice grip, making it hard to turn your head, see or think straight. And the finishing touch? Take an extended-release dose or two of an antihistamine or cough medicine that makes you feel drowsy enough you want to cry and can do nothing but think about how much to want to lie down – all day long. I’m envious of those who don’t understand, but not bitter. There are just days — like today — I am so tired of fighting it. I know unless you have to live with this, there is no way for you to comprehend the overwhelming struggles. That’s OK. It’s making me feel “less than” or shamed for the fact I don’t always win over my body that isn’t. So please, don’t minimize pain or invalidate my truth when I share it. As the quote says, “Be kind, for everyone you meet is fighting a battle you know nothing about.”

A Small Change in Routine Has Major Consequences for Chronic Illness

Frustrated. Anxious. Exhausted. That’s how I feel today. Spent too long of a day in the office yesterday and it definitely came back to haunt me: It took me my usual hour-plus or so to decompress at home after work, but that meant I couldn’t sleep until more than an hour past my usual bedtime. Didn’t sleep well at all. I was restless and woke several times during the night because of terrible pain in my neck and shoulder. I disappointed myself at the gym this morning. I don’t know if it was the lack of sleep or the pain or both, but I definitely felt less than 100% and I could see it in how I performed. Then, I nearly passed out post-shower this morning. Ended up having to get back in bed, where I slept like a rock until two hours later, when I finally had the will to get myself out of bed and dressed for work. (Fortunately, my morning gym time is early enough to make a two-hour morning “nap” an option.) Unfortunately, I beat myself up for “wasting” that time sleeping. I got to the office roughly an hour and a half later than usual. I had let them know I would be late via text messages, but no one responded. Felt conspicuous. My usual infusion of caffeine from my green tea and pre-workout energy booster did literally nothing for my overall mental haziness and physical fatigue. Each task I’ve completed today has taken longer than anticipated and longer than usual. Brain fog means I process things more slowly and am more prone to make mistakes, which, in turn, means I have to double and triple-check every single thing. It’s the mental equivalent of swimming through mud — painfully slow and requiring an enormous amount of effort. I will leave work today having accomplished less than I hoped, because regardless of what is or isn’t done, I know I will have to leave at the stroke of 5 p.m. to avoid compounding the issue I had today and missing any more time this week. Leaving early won’t alleviate the exhaustion, just prevent it from worsening. I’ll have no energy to fix myself a decent meal tonight, so will end up eating something pre-prepared and quick (Taco Bell drive-thru, here I come!). Stopping at the drive-thru to get burritos will mean when I get home — just a little bit later than I would have otherwise — I’ll feel rushed and impatient, trying to get the dog walked, animals fed and myself showered before I crash. There have been times the clock has run out and I wind up having to lie down with a cool rag on my head because of a splitting headache and because I am so nauseous and dizzy from the exhaustion and pain. I’ll push myself harder and faster than I should, trying desperately to avoid that worst-case scenario. If my stomach is less than thrilled with my dinner choice (because my GI system likes to get in on the fun of the chronic inflammation that affects every other part of my body), it will rebel and I will be up past my bedtime yet again, waiting for it to settle so I can lie down without getting nauseous and without having to make multiple runs to the bathroom. I’ll be frustrated and long for the release of journaling, which was once my common practice. But holding a pen to write for much longer than five minutes makes my joints ache and causes muscle spasms in my hand that make it impossible to continue. All of this because I stayed to help a co-worker instead of leaving at my usual time. And I worry. I worry people will mistake my insistence on leaving “on time” for laziness or ambivalence. I worry they don’t believe me when I say I will pay for something as simple as staying at the office for an extra hour and a half.  I worry they’ll think I’m exaggerating or looking for attention. I worry they don’t understand just how chronic a chronic illness can be, that they’ll think I’m just a negative person who is always sick, sad, slow or hurting because I have a “lousy attitude.” I worry they’ll think I’m not a team player or I shirk my responsibilities. I worry I’ll be accused of taking advantage of the situation somehow and I won’t be able to counter that argument. Most of all, I worry this is the time the flare never dies down, that it’s just the decline into a “new normal.” And so, I am mentally and emotionally exhausted, too — on top of the physical. I wish there was some way to allow people to experience what I feel in my body every day, but especially on bad days. I know there are pregnancy bellies and machines that can simulate labor contractions, so why not something to simulate the reality of a chronic invisible illness? A weighted body suit that constricts around random muscles at random times, features bullet-shaped protrusions that press into all the most sensitive areas of your body and occasionally delivers a painful electric shock in some random spot, lasting anywhere from two to 90 seconds. Added bonus points if they make a matching weighted headpiece that puts your skull in a permanent vice grip, making it hard to turn your head, see or think straight. And the finishing touch? Take an extended-release dose or two of an antihistamine or cough medicine that makes you feel drowsy enough you want to cry and can do nothing but think about how much to want to lie down – all day long. I’m envious of those who don’t understand, but not bitter. There are just days — like today — I am so tired of fighting it. I know unless you have to live with this, there is no way for you to comprehend the overwhelming struggles. That’s OK. It’s making me feel “less than” or shamed for the fact I don’t always win over my body that isn’t. So please, don’t minimize pain or invalidate my truth when I share it. As the quote says, “Be kind, for everyone you meet is fighting a battle you know nothing about.”

A Small Change in Routine Has Major Consequences for Chronic Illness

Frustrated. Anxious. Exhausted. That’s how I feel today. Spent too long of a day in the office yesterday and it definitely came back to haunt me: It took me my usual hour-plus or so to decompress at home after work, but that meant I couldn’t sleep until more than an hour past my usual bedtime. Didn’t sleep well at all. I was restless and woke several times during the night because of terrible pain in my neck and shoulder. I disappointed myself at the gym this morning. I don’t know if it was the lack of sleep or the pain or both, but I definitely felt less than 100% and I could see it in how I performed. Then, I nearly passed out post-shower this morning. Ended up having to get back in bed, where I slept like a rock until two hours later, when I finally had the will to get myself out of bed and dressed for work. (Fortunately, my morning gym time is early enough to make a two-hour morning “nap” an option.) Unfortunately, I beat myself up for “wasting” that time sleeping. I got to the office roughly an hour and a half later than usual. I had let them know I would be late via text messages, but no one responded. Felt conspicuous. My usual infusion of caffeine from my green tea and pre-workout energy booster did literally nothing for my overall mental haziness and physical fatigue. Each task I’ve completed today has taken longer than anticipated and longer than usual. Brain fog means I process things more slowly and am more prone to make mistakes, which, in turn, means I have to double and triple-check every single thing. It’s the mental equivalent of swimming through mud — painfully slow and requiring an enormous amount of effort. I will leave work today having accomplished less than I hoped, because regardless of what is or isn’t done, I know I will have to leave at the stroke of 5 p.m. to avoid compounding the issue I had today and missing any more time this week. Leaving early won’t alleviate the exhaustion, just prevent it from worsening. I’ll have no energy to fix myself a decent meal tonight, so will end up eating something pre-prepared and quick (Taco Bell drive-thru, here I come!). Stopping at the drive-thru to get burritos will mean when I get home — just a little bit later than I would have otherwise — I’ll feel rushed and impatient, trying to get the dog walked, animals fed and myself showered before I crash. There have been times the clock has run out and I wind up having to lie down with a cool rag on my head because of a splitting headache and because I am so nauseous and dizzy from the exhaustion and pain. I’ll push myself harder and faster than I should, trying desperately to avoid that worst-case scenario. If my stomach is less than thrilled with my dinner choice (because my GI system likes to get in on the fun of the chronic inflammation that affects every other part of my body), it will rebel and I will be up past my bedtime yet again, waiting for it to settle so I can lie down without getting nauseous and without having to make multiple runs to the bathroom. I’ll be frustrated and long for the release of journaling, which was once my common practice. But holding a pen to write for much longer than five minutes makes my joints ache and causes muscle spasms in my hand that make it impossible to continue. All of this because I stayed to help a co-worker instead of leaving at my usual time. And I worry. I worry people will mistake my insistence on leaving “on time” for laziness or ambivalence. I worry they don’t believe me when I say I will pay for something as simple as staying at the office for an extra hour and a half.  I worry they’ll think I’m exaggerating or looking for attention. I worry they don’t understand just how chronic a chronic illness can be, that they’ll think I’m just a negative person who is always sick, sad, slow or hurting because I have a “lousy attitude.” I worry they’ll think I’m not a team player or I shirk my responsibilities. I worry I’ll be accused of taking advantage of the situation somehow and I won’t be able to counter that argument. Most of all, I worry this is the time the flare never dies down, that it’s just the decline into a “new normal.” And so, I am mentally and emotionally exhausted, too — on top of the physical. I wish there was some way to allow people to experience what I feel in my body every day, but especially on bad days. I know there are pregnancy bellies and machines that can simulate labor contractions, so why not something to simulate the reality of a chronic invisible illness? A weighted body suit that constricts around random muscles at random times, features bullet-shaped protrusions that press into all the most sensitive areas of your body and occasionally delivers a painful electric shock in some random spot, lasting anywhere from two to 90 seconds. Added bonus points if they make a matching weighted headpiece that puts your skull in a permanent vice grip, making it hard to turn your head, see or think straight. And the finishing touch? Take an extended-release dose or two of an antihistamine or cough medicine that makes you feel drowsy enough you want to cry and can do nothing but think about how much to want to lie down – all day long. I’m envious of those who don’t understand, but not bitter. There are just days — like today — I am so tired of fighting it. I know unless you have to live with this, there is no way for you to comprehend the overwhelming struggles. That’s OK. It’s making me feel “less than” or shamed for the fact I don’t always win over my body that isn’t. So please, don’t minimize pain or invalidate my truth when I share it. As the quote says, “Be kind, for everyone you meet is fighting a battle you know nothing about.”

The Importance of Stress Management When You Have Chronic Illness

For the last week or so, I’ve been dealing with what appears to be some sort of autoimmune flare that has manifested itself in rash, hives and welts that are blissfully unresponsive to OTC antihistamines and steroid cream. It started on my shoulders and spread onto my chest, neck, trunk, forearms and legs, with varying degrees of severity and itching/burning sensation. After realizing the stuff wasn’t dissipating on its own, I went ahead and paid a visit to my PCP. I trust her and she’s thorough, and she could fit me in the same afternoon I called. After ruling out (reasonably…we didn’t re-do allergy testing or anything) allergic reaction, contact dermatitis, shingles, infection, etc., she very gently said, “I wish I could pinpoint some specific cause for you, but I’m afraid this is an autoimmune reaction to stress and exhaustion.” That hit me like a shot to the gut. It would have been infinitely more comforting to be able to point to “the thing” that triggered this. “The thing,” it turns out, is my life. (The doc and I had a good laugh about that during my visit.) She followed up by asking if I’d been under any extra stress the last couple of weeks. Well…no, nothing out of the ordinary. In fact this is one of smoothest “new semester start-ups” I’ve ever had in my job at a local university.  She said something like, “Well…I think we’ve already learned that you just need to be extra careful…managing your stress, making sure you’re getting plenty of rest…” Me [in my head]: Uh…I kinda thought I was doing that?  Apparently, I need to step up my game.  But how…? Also me: Been getting to bed later than I should be, partly, I realize, because I have been working some later hours. So there’s one thing I can be more mindful of. And I know I kind of let my eating go over the holidays and haven’t been as attentive as I should be about being sure I’m fueling the old girl (my body) well. And I’ve been sick on and off since before Christmas, so my exercise routine has gotten a little out of whack. Oooohhhhh…..OK, yeah.  I see it now. Me again: [sigh.] Feels like a second (nonpaying) job, this keeping up with yourself and having a balanced life thing. I think it actually feels that way for most people. I just have a little less room to fudge it than a lot of folks. It’s frustrating and unfair, but it is what it is, and I have to work with what I’ve got. So I just need to slow down and pull it together. Remain calm. Follow the signs to the nearest exit and proceed in an orderly fashion. That’s it…nice and easy.  Don’t panic and rage-clean the apartment you cleaned rather thoroughly last weekend.  Don’t do anything “RASH” (heh heh — see what I did there?). If I seem short (NO, that is not a joke about my height — I’m almost 5’2″, thank you very much), cut me some slack, alright?  You’d be short too if you’d just spent 10 days covered in ever-morphing rash and feeling like you’d been run over by a steamroller.

A Small Change in Routine Has Major Consequences for Chronic Illness

Frustrated. Anxious. Exhausted. That’s how I feel today. Spent too long of a day in the office yesterday and it definitely came back to haunt me: It took me my usual hour-plus or so to decompress at home after work, but that meant I couldn’t sleep until more than an hour past my usual bedtime. Didn’t sleep well at all. I was restless and woke several times during the night because of terrible pain in my neck and shoulder. I disappointed myself at the gym this morning. I don’t know if it was the lack of sleep or the pain or both, but I definitely felt less than 100% and I could see it in how I performed. Then, I nearly passed out post-shower this morning. Ended up having to get back in bed, where I slept like a rock until two hours later, when I finally had the will to get myself out of bed and dressed for work. (Fortunately, my morning gym time is early enough to make a two-hour morning “nap” an option.) Unfortunately, I beat myself up for “wasting” that time sleeping. I got to the office roughly an hour and a half later than usual. I had let them know I would be late via text messages, but no one responded. Felt conspicuous. My usual infusion of caffeine from my green tea and pre-workout energy booster did literally nothing for my overall mental haziness and physical fatigue. Each task I’ve completed today has taken longer than anticipated and longer than usual. Brain fog means I process things more slowly and am more prone to make mistakes, which, in turn, means I have to double and triple-check every single thing. It’s the mental equivalent of swimming through mud — painfully slow and requiring an enormous amount of effort. I will leave work today having accomplished less than I hoped, because regardless of what is or isn’t done, I know I will have to leave at the stroke of 5 p.m. to avoid compounding the issue I had today and missing any more time this week. Leaving early won’t alleviate the exhaustion, just prevent it from worsening. I’ll have no energy to fix myself a decent meal tonight, so will end up eating something pre-prepared and quick (Taco Bell drive-thru, here I come!). Stopping at the drive-thru to get burritos will mean when I get home — just a little bit later than I would have otherwise — I’ll feel rushed and impatient, trying to get the dog walked, animals fed and myself showered before I crash. There have been times the clock has run out and I wind up having to lie down with a cool rag on my head because of a splitting headache and because I am so nauseous and dizzy from the exhaustion and pain. I’ll push myself harder and faster than I should, trying desperately to avoid that worst-case scenario. If my stomach is less than thrilled with my dinner choice (because my GI system likes to get in on the fun of the chronic inflammation that affects every other part of my body), it will rebel and I will be up past my bedtime yet again, waiting for it to settle so I can lie down without getting nauseous and without having to make multiple runs to the bathroom. I’ll be frustrated and long for the release of journaling, which was once my common practice. But holding a pen to write for much longer than five minutes makes my joints ache and causes muscle spasms in my hand that make it impossible to continue. All of this because I stayed to help a co-worker instead of leaving at my usual time. And I worry. I worry people will mistake my insistence on leaving “on time” for laziness or ambivalence. I worry they don’t believe me when I say I will pay for something as simple as staying at the office for an extra hour and a half.  I worry they’ll think I’m exaggerating or looking for attention. I worry they don’t understand just how chronic a chronic illness can be, that they’ll think I’m just a negative person who is always sick, sad, slow or hurting because I have a “lousy attitude.” I worry they’ll think I’m not a team player or I shirk my responsibilities. I worry I’ll be accused of taking advantage of the situation somehow and I won’t be able to counter that argument. Most of all, I worry this is the time the flare never dies down, that it’s just the decline into a “new normal.” And so, I am mentally and emotionally exhausted, too — on top of the physical. I wish there was some way to allow people to experience what I feel in my body every day, but especially on bad days. I know there are pregnancy bellies and machines that can simulate labor contractions, so why not something to simulate the reality of a chronic invisible illness? A weighted body suit that constricts around random muscles at random times, features bullet-shaped protrusions that press into all the most sensitive areas of your body and occasionally delivers a painful electric shock in some random spot, lasting anywhere from two to 90 seconds. Added bonus points if they make a matching weighted headpiece that puts your skull in a permanent vice grip, making it hard to turn your head, see or think straight. And the finishing touch? Take an extended-release dose or two of an antihistamine or cough medicine that makes you feel drowsy enough you want to cry and can do nothing but think about how much to want to lie down – all day long. I’m envious of those who don’t understand, but not bitter. There are just days — like today — I am so tired of fighting it. I know unless you have to live with this, there is no way for you to comprehend the overwhelming struggles. That’s OK. It’s making me feel “less than” or shamed for the fact I don’t always win over my body that isn’t. So please, don’t minimize pain or invalidate my truth when I share it. As the quote says, “Be kind, for everyone you meet is fighting a battle you know nothing about.”

Kirri L.
Kirri L. @kirril
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What a Morning With a Fibromyalgia Flare-Up Is Like for Me

I’d like to run you through a typical morning during a fibromyalgia flare-up, though to be honest, no two mornings with fibromyalgia are quite the same. The steps are as follows: Wake up to the alarm on your phone placed on the other side of the room. Although it’s the weekend and you’ve had a solid block of sleep (thank you, medication), you don’t want to mess with things by sleeping half the day away, and you’ve got your mum’s voice in your head telling high-school-you that “there’s a big world out there and you’re missing it.” Let the music run for a little while as you turn, flex your legs and carefully navigate the distance from pillow to desk because you can’t see very well. Turn it off and steady yourself against the doorframe for a minute or so until your vision clears enough to open the blinds and steer around the dog on the floor. Glance at the exercise gear you’d set out with good intentions the night before, determined to be “healthy and strong,” and accept that it’s not happening today, like yesterday. Splash some water on your face and load up your toothbrush. Shuffle around opening up the house. Turn on the coffee machine, knowing that caffeine is one of the worst things for your condition, but also knowing yourself well enough to understand that you will become liquefied if caramel coffee doesn’t happen today. Start setting out your supplements and notice that there is probably a day’s supply of balanced vitamins and nutrients for three people in that pile. You haven’t noticed a difference. You’ve barely been awake for five minutes, but the fatigue is so mighty, you are going cross-eyed as you stand. The muscles are beginning to catch up, and they feel like you’ve got a football team strapped to your body. Open up a bag of coffee grounds and pour them into your mug. Set down the bag, stare and remember you’re making pod coffee and the grounds go in the French press, not the mug. The last time you checked, you couldn’t possibly be pregnant. Oh, right, fibro fog. Make your coffee (properly) and take it outside with your phone to sit in the sun and go through your Flipboard for a few minutes — the vitamin D usually helps settle the brain and the body. That’s one task that seemed to go as planned. Feeling good, you go inside and check your emails/social media profiles. Last 20 minutes before you’re making yawning sounds like Chewbacca. Goody, so it looks like chatting and studying from home are out of the question today, too. (Who could’ve thought opening windows required so much energy?) Start making breakfast. Side-eye every option in your fridge/pantry because didn’t you read something last week about an ingredient people with fibromyalgia can’t have because X decreases the production of Y? Or does it increase it? You can’t remember. Put something in the microwave and leave the room to make your bed. Hear the ding from down the hall. Come back and stare at the coffee machine for longer than you’d care to admit, wondering why nothing’s happening. Turn around to see the microwave and realize. Laugh. Try not to cry. Stubbornly defy yourself, get dressed and head out the door to run some errands, insisting you’re still a fully-functioning adult who should be able to take a good long walk and pick up a few things. Try to ignore the dizziness and thumping in your chest. Catch a glimpse of yourself in the mirror and accept that you should get a taxi instead. Cancel any social plans for the day. You’d be no good to anyone right now, you think. No one would want to hang around you if they saw you this way, you believe. Set up camp with “Modern Family” and a bottle of water and try not to think, which, let’s face facts, isn’t all that hard right now. Your energy might fluctuate as the day goes on, and you might even feel better, good enough to go out and pick up some groceries or see friends and family. But you won’t be able to do both. Are you exhausted just reading all this? So am I. Image via Thinkstock Images