Looking Too Well to Be Sick, Feeling Too Sick to Act Well

By Allison Jonergin

When I begin to feel a bit better – yes, even chronically ill people are allowed to have good days – there is a lot of catching up to do. Sometimes it feels I have just enough time to come up for air before being washed down again.

Even when I’m feeling my best, the majority of my time is spent resting at home, sitting at appointments, standing in line at the pharmacy, and taking medicine.

I wish my schedule could be freed to do fun things, and I’d settle for being able to do productive things like housework. But if I push myself beyond my limits, even on good days, my symptoms will surge and I’ll suffer a setback.

It takes a great deal of work to tend to my basic needs. In fact, if I don’t care for myself adequately, I’m stripped of my ability to even perceive small joys around me.  Feeling exhausted, in pain, and impatient can turn into a vicious cycle wherein I take in only the negative and thus have only negativity to offer.

I can feel disgruntled about waiting over an hour for an appointment, or I can feel thankful I felt up to driving there. I can feel depressed that I spend more time with my doctors than my friends, or I can feel thankful I have a team of treating physicians who know and understand my diagnoses and symptoms. I can allow my self esteem to suffer for needing to rely heavily on my family for support, or I can be immersed in the love I feel when their support seems to never diminish, no matter how many times I must drop my bucket into their well. I can feel discouraged when I have no energy left after attending these appointments, or I can accept the sober truth that my chronic illnesses would be even less manageable if I stopped going to them at all.

I must diligently carve out time for rest and recuperation, as well as time to gently exercise my tender limbs, time to make healthy meals and time to just be. It’s not realistic to manage doing all of these things every day, but I can rotate my priorities so I take the best possible care of myself.

I’m not ashamed of my schedule, but I struggle to communicate that missing a nap isn’t like forgetting to drink my eighth glass of water. It’s more like not eating for four days in a row. It’s more like day 11 of the flu. It’s more like seeing stars after getting punched in the face. Brain fog clouds my windshield completely, and I feel like I’m trying to distinguish landmarks in whiteout conditions.

I make silly mistakes. I trip over my own feet. I get flustered talking about even the most familiar topics. I pace in and out of rooms, forgetting why I went into them in the first place. I feel like a stranger in a foreign land who can’t remember what she wants to say long enough to translate it into the local language.

My only source of relief comes in the form of a deep sleep.

It’s frustrating to sleep the afternoon away, but I know the importance of ensuring my body gets the rest it needs, even on good days.

Allison Jonergin is a SUNY Plattsburgh alumna and North Country native. She has fibromyalgia, CFS/ME and endometriosis. She also deals with irritable bowel syndrome, anxiety, depression and migraines.

Daring To Hope

By Allison Jonergin

Because of my health struggles, I know worthlessness, uselessness and emptiness. I know sorrow, frustration, loneliness and grief. I know the taste of desperation and the flood of fury.

I also know the power of a kind word, a helping hand, a second wind, or a song playing over the radio.

I know the power of someone choosing to employ empathy when one could choose the easier path of sympathy.

I know the power I yield inside to shield myself from feelings of worthlessness and to nourish feelings of resilience and grit.

I can succumb to feeling powerless; I can project my worst anxieties; I can expect the worst outcomes and allow myself to be convinced every day will be the same.

But hope inspires me to believe. I have faith in my ability to change my day, my world and my life with the choice to seek out happiness. When it is nowhere to be found, I choose to trust that it will manifest itself in my heart if I do the painstaking work of taking care of myself physically, mentally and emotionally. If I reach outside of myself, outstretch a hand to a stranger who could use a smile just as badly as I could, I can create a life worth living, loving and sharing with others.

When I allow myself to feel only pain, I am alone, no matter how many people care for me and insist on showing me so. Pain holds me prisoner, but I have the power to shake loose the door of my cell and walk out of it. The chains may remain shackled around my ankles, but mentally I can go anywhere and feel anything I desire if I trust and commit to doing the work every day, not just when I feel like feeling better.

The work looks different for each of us. I’ve found mine begins with respecting myself as well as my limits, which fluctuate throughout the day and the week. When I can trust that I’ll take care of myself first and foremost, I’m freed to love and care for others around me, feeling safe in the belief that when I’m tapped out, I’ll tap out. Until then, I focus my attention purposefully on the things I can do for myself so that I have more to give to others.

Mental Illness and Coping in Relationships

By Gemma Tendrich

Often, when the topic of handing mental illness in regards to romantic relationships comes up, it comes with the assumption that only one person in the relationship is struggling with mental illness. These discussions seem to focus on how someone without mental illness can help their partner, but rarely do I see advice about relationships where both partners have mental illness. It is a topic that needs to be focused on more, especially in regards to understanding how to mutually support each other in a relationship. This is especially true when it comes to individual coping mechanisms and how they might overlap or conflict.

Say you and your partner both have anxiety disorders. When your partner has a panic attack they often pace the room and verbally name things around them as a way to ground themselves. However, the way your brain processes anxiety means that the movement and noise of your partner doing this can become over stimulating, causing your anxiety to worsen.

I feel situations likes these are rarely talked about. There are points where two people can have conflicting needs for their mental health that happen at the same time or can feed into each other in ways that worsen the situation. But situations like the one mentioned above don’t mean that there is something wrong with the relationship, or that the coping mechanism someone is using is bad. It just means that those in the relationship need to sit down and have a discussion about their needs when it comes to mental health. Maybe coping mechanisms can be adapted or outside support systems can be brought in. In the above example, perhaps when your partner paces and uses verbal tools to cope you can go into a separate, quieter room as to not get overwhelmed. Or, if your partner needs to talk with someone, but you are too overwhelmed to give them verbal support back, they can call a friend or family member for support.

The important part is to understand how to communicate your needs in a romantic relationship and be willing to listen and adapt to the needs of your partner so that both of you can be happy and healthy together. This is true in every aspect of a relationship, but how mental illness can factor in is something more should be open about talking about.

Let’s Talk About Fatigue

By Allison Jonergin

There are types of exhaustion that are commonplace in the lives of some that I have never experienced. Some parents work long hours and care for young children. Childless, this routine and the accompanying exhaustion is a stranger to me. I’ve seen it, I’ve heard people talk about it, but I’m not getting up in the middle of the night to feed an infant or to change a child’s sheets after an accident.

I have chronic fatigue syndrome (CFS). Since it has been around, it has earned new names like systemic exertion intolerance disease (SEID) and myalgic encephalomyelitis (ME), as researchers’ orbit nears the true cause and nature of this disease. Myalgia refers to muscle pain, while that scary looking word means inflammation of the brain or spinal cord. According to the CDC, it leaves one in four sufferers house- or bed-bound at some point (“What is ME/CFS?” 2018).

The headlining symptoms of CFS/ME are fatigue that inhibits one’s ability to carry out the activities one once could and the worsening of symptoms following activities that push one’s energy envelope. The latter is called post-exertion malaise and happens after physical, mental or emotional activity.

Carrying a few items to the cash register feels like frantically turning over a dead engine. At last it guns forward, only to die moments later. But I’m able to coast a ways, and that’s often how I go about my day. Coasting. Turning over. Dying. A trip to the grocery store is an all-day affair, and I always bring backup. I don’t do the driving or even push the cart if I can get away with it. I lift only half the items onto the conveyor belt, then back into the cart, then into the car, then into the house, then onto the countertops, then into the cupboards. I’m hyperaware of every movement I make, feeling my energy levels repeatedly pounding into rock bottom until I finally find myself lying down.

I also experience brain fog, headaches, chills, night sweats, joint pain, the need for excessive sleep without feeling rested afterward, insomnia, chemical and food intolerances, tender lymph nodes and the worsening of symptoms upon sitting or standing.

Sometimes my symptoms will worsen right away, like when I need to rest after walking my dog. Other times I’ll take pride in surviving a busy day, only for the aftereffects to hit me like a truck the next morning.

For now, patients can only be diagnosed after a doctor rules out all other possibilities. More research is needed to develop diagnostic tests and treatment options.

The Stigma of Being Disabled Due to Invisible Illnesses

By Allison Jonergin

Multiple invisible illnesses have combined to disable me. In the order in which I was diagnosed, I have:

Asthma*: a lung disease causing shortness of breath, wheezing, tightening of the chest, and coughing

Endometriosis*: a disease of the reproductive system in which tissues making up the endometrium are found outside of the uterus on other organs, causing pain, infertility, abnormally heavy or painful periods, and digestive distress

Irritable Bowel Syndrome (IBS)*: a colon disorder characterized by abdominal pain, constipation, diarrhea, and food intolerances

Gastroesophageal reflux disease (GERD): a recurring malfunctioning of the lower esophageal sphincter, causing heartburn and the backward flow of the stomach’s contents into the esophagus

Temporomandibular Joint Dysfunction (TMJ)*: a disorder wherein the temporomandibular joint doesn’t move properly, causing pain and jaw locking

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)*: a disease characterized by debilitating fatigue not relieved by rest; other symptoms include sleep disruptions, cognition problems, pain, and the worsening of symptoms following mental/physical activity

Chronic Migraines*: severe headaches on more than 15 days each month, often accompanied by nausea and sensitivity to light and sound

Fibromyalgia*: a disorder featuring muscle tenderness and pain, malaise, fatigue, mood changes, and digestive and cognitive symptoms

Generalized Anxiety Disorder*: an anxiety disorder characterized by excessive worrying or fear, fast heartbeat, tiredness, irritability and problems with sleep

Hypothyroidism: a condition in which the body doesn’t produce enough thyroid hormone, causing fatigue, muscle weakness, and cold intolerance

Degenerative Disc Disease*: pain and muscle spasms caused by osteoarthritis of the spine

Depression*: a mood disorder presenting with chronic sadness, suicidal ideation, fatigue, and changes in sleeping and eating habits

You can see none of these. I’m not bound to a wheelchair or using the assistance of a guide dog. I don’t wheel an oxygen tank behind me.

There are no cures for any of these illnesses.

Still, some ask, “Surely you don’t consider yourself disabled?”

I didn’t wake up one day and decide to identify as a disabled person. I spent a long time in denial before I accepted the truth.

Others ask, “You’re not just going to sit around collecting disability, right?”

In our capitalist society, it’s taboo to stay at home, unemployed.

“What do you even do all day?” the less blunt inquire.

I’m not able to enjoy what others perceive to be one long vacation.

I don’t question how productive you are on your days off. I hope you’re able to spend time doing things that give you life and lighten the weight of your worries.

It is hard work, physically, mentally and emotionally to live a disabled life due to invisible illnesses. I spend most of my day babysitting my illnesses, like a pack of children after a birthday party. One is getting sick in the bathroom. One has been up all night. Another won’t stop crying, giving me a headache. Yet another whines of fatigue, wanting to sleep in all day. One can’t eat this food or that. The one next to him says she’ll flip out if I don’t serve her this food and that other one too. Another is pinching me all over.

There’s no coffee, no time-out, no day off. There’s no killing any of the kids. I must care for each of them tenderly, loving them back to their sweet selves, if only for a moment. I’m exhausted before the day is half over, feeling overcome by what feels like the flu.

A bad morning doesn’t have to ruin my day, though. Once I give myself permission to start over with different expectations, the day is mine again to conquer.

*May cause additional symptoms

Allison Jonergin is a SUNY Plattsburgh alumna and North Country native. She has fibromyalgia, CFS/ME and endometriosis. She also deals with irritable bowel syndrome, anxiety, depression and migraines.

More Blogs by Allison Jonergin:

• A Day in the Life
• Experiencing an Endometriosis or Fibromyalgia Flare
• When Someone Doesn’t Understand the “Chronic” in Chronic Illness
• When I’d Love to Come, But I Can’t

A Day in the Life

By Allison Jonergin

I awaken with a jerk. Cramps. I leap out of bed, and before I know what’s happening, I’m in the bathroom where my intestines reject yesterday’s meal-of-the-day.

Out of breath and soaked in perspiration, I hobble back to bed. Sunlight streaks through the blinds, prompting twinges of pain behind my eyes. I want to close them, but my anxiety is already awake, and my heart is pounding loudly in my chest. I toss and turn for a while, until I’ve recovered enough from my morning escapade to rise and shower. I forget to bring a towel with me, thanks to fibro fog clearing my train of thought from its tracks, and head back to the hallway closet twice before remembering to grab one. The bristles of my toothbrush scrape against my teeth like nails against a chalkboard. Already my throat is dry and hoarse – a side effect of more than one of my medications. The dry mouth rinse feels luxurious and refreshing, and I swirl it around and around in my mouth, not wanting to expectorate.

I slip off my clothes and steady myself as I step into the tub, using two shower bars for support. I get dizzy spinning around in an enclosed space, and knock a tube of exfoliator onto the floor with an echoing boom. I cringe. At first, I’m tempted to leave it, knowing there’s a good chance I’ll knock it over again. My better sense kicks in, and I realize I have an equal or better chance of tripping over it. I squat and pick it up. The warm water turns cold for a moment, and I feel as though I’m in the blast of a firefighter’s hose. My pain receptors memorize the location of each droplet to haunt me with later, long after I’ve turned off the water.

I dress in warm layers of soft clothing, ditching abrasive materials like denim. Allodynia – a pain caused by non-painful stimuli – makes it hurt when fabric rubs against my skin. Moreover, allodynia can make the surface of my head and body sensitive to touches of any kind, even a loved one’s soft embrace. A well-intentioned hug can squeeze me like a garbage truck.

I no longer risk going an entire day with cold feet. I’ll pack extra socks in my purse and slide on a second layer if I’m having trouble regulating my body temperature or the outside temperatures dip so low that the cold takes root in my bones and doesn’t leave.

With fibromyalgia, the trick is getting ahead of the pain using preventative tactics. Eating a diet rich in whole fruits and vegetables fends off inflammatory pain caused by eating foods high in wheat and dairy. Allowing ample time in my schedule to rest during the day relieves the stress of a sleepless night. I’ve crafted an exercise routine that heals and empowers my body when I practice it consistently.

Along with an extra pair of socks, in my purse you’ll find dry mouth lozenges and lip balm. Where dry mouth is, chapped lips aren’t far behind. I carry with me a bottle of water at all times to satisfy my mouth’s craving for coolness. I seek out these small sources of comfort with purpose, planning them into my day.

I hop from one sweet indulgence to the next, relishing in the relief that washes over me, cleansing my despondency until the next guilty pleasure.

Next up, a nap. 

Allison Jonergin is a SUNY Plattsburgh alumna and North Country native. She has fibromyalgia, CFS/ME and endometriosis. She also deals with irritable bowel syndrome, anxiety, depression and migraines.

More Blogs by Allison Jonergin:

• Experiencing an Endometriosis or Fibromyalgia Flare
• When Someone Doesn’t Understand the “Chronic” in Chronic Illness
• When I’d Love to Come, But I Can’t
• Bravery
• You Have a Say

Experiencing an Endometriosis or Fibromyalgia Flare

Allison Jonergin
Guest Blogger

It’s hard to talk about flares. While they’re unfolding, I’m not carving intricate memories, I’m focused on my next breath. Then suddenly they’re over, though full days have passed. It feels insincere to talk about it when it’s not actually happening.

A sufferer of chronic pain, I don’t have pain-free days. Whereas most days press my limits, during flares I occupy the losing side.

I remember my Dad urging me, “Now’s not the time to be brave,” while waiting to see the doctor in the emergency room. The pain was not nearly as severe as it had been moments prior. It was still the worst pain I’d experienced in my life, but the throbbing wound couldn’t compare to the impact of the bullet. Except it wasn’t a bullet or a visible flesh wound, but internal bleeding caused by lesions of endometrial tissue swelling in unison with my endometrial lining, located in the uterus, growing to receive a fertilized egg. And, when no such egg arrived, it was time to break away and leave my body as my period. Except these endometrial tissues don’t belong outside of the uterus, and they were growing on organs throughout my pelvis and abdomen. Trapped, the tissues bled until fluxes in my hormone levels instructed them to stop. My options were hormone treatments or surgery. I would need several rounds of both.

The doctor didn’t tell me this that night. Like many women, my endometriosis was going undetected. I waited three years after the onset of my first symptoms to be diagnosed.

I’m fortunate to be a success story. Two years after that emergency room visit, I underwent a total hysterectomy, removing also my fallopian tubes and one ovary. While there is no cure for endometriosis, I’m no longer having surgery after surgery to remove endometriosis lesions. I still experience pelvic pain – thanks mostly to scar tissue – especially when my remaining ovary decides to ovulate.

Fibromyalgia, on the other hand, is an ache that runs deep into my muscles; it clenches my bones and joints in vice grips; it sends supercharged shockwaves down my limbs like a rogue sparking electric wire; it lights entire sheets of skin on fire from within; it furnishes my wrists and ankles with cement blocks, exhausting my physical strength.

This sort of suffering doesn’t build character; it breaks it.

In A Farewell to Arms, Ernest Hemingway said, “The world breaks everyone and afterward many are strong at the broken places.”

Broken is exactly how I feel in the midst of a flare. I don’t have the energy to speak, or even to nod or smile. I’m taking shallow breaths because my rib cage feels too heavy to lift. I can’t hold myself upward, the weight of my muscles, organs and fatty tissue slung over my skeleton like a wet towel. None of my movements feel natural, my shirt rubbing like sandpaper against my skin. I’m dragging myself, with not a single muscle cooperating in carrying the load.

I’m tapped out. This must be what dying feels like, I think. But around me, smiling faces are speaking and asking me questions. They don’t see the light leaving my eyes.

Every word my ears involuntarily hear siphons the last drops of energy from my tank.

Hemingway went on to write, “But those that will not break it kills. It kills the very good and the very gentle and the very brave impartially.”

So in my darkest moments, I remember that I have braved long nights before, and I’ve lived to see the sun rise. To break means I am still alive.

More Blogs by Allison Jonergin:

• When Someone Doesn’t Understand the “Chronic” in Chronic Illness
• When I’d Love to Come, But I Can’t
• Bravery
• You Have a Say

When Someone Doesn’t Understand the “Chronic” in Chronic Illness

Allison Jonergin
Guest Blogger

“What’s wrong?”

“What do you mean?”

“I don’t know. You just seem so…”

What? I seem so, what? 

I seem less talkative, less energetic, less happy. So why don’t you just say that? 

Asking me if I’m okay is telling me I don’t seem okay enough for you. Asking me what’s wrong is telling me you can start to see through the façade I spend so much energy daily constructing. It is not offering understanding or a helping hand. Rather, it is telling me the reality of my being sick makes you uncomfortable. Oh, and also, it’s my fault. Merry Christmas. 

You’re not satisfied when I assure you I’m okay. Sure, I could rattle off the diagnoses, but I know what comes next, and quite frankly, I don’t have the energy for the emotional labor of fending off forced sympathy that I didn’t want in the first place. So I summarize and say I’m sick. I say I’m preoccupied. I say I’m tired. All of these are true, and none of them tell you what is really going on.

Pain is surging at the usual hotspots, my joints. It feels like each one has a funny bone that has just been hit with a hammer. A migraine heightens my sensitivity to the lights and sounds around me. The bones of my skull conduct the inward pain outward, like a copper panhandle, singeing my fingers when I rub my brow. My eyes feel heavy, they burn, and there is an annoying aura making it impossible to focus clearly. I feel mentally drained. It’s difficult to think, let alone speak, in complete sentences. This doesn’t stop my anxiety and depression from shouting pleasantries at each other inside my head, coming up with colorful slogans like, I don’t care about anyone, not even myself. I’m tired. I don’t want to do this anymore. How will things ever get better?

“I’m not feeling well,” I offer.

“Still?”

Yes, actually, hence the “chronic” in chronic illnesses.

Whether or not you mean to, you’re saying, “You don’t seem sick most of the time. What is wrong with you now?” I am always sick. I try my very best not to seem so. All you’re doing is acknowledging that while I can try my best to pretend I’m normal, I can’t pretend away the very real impacts my chronic illnesses have on my life.

I often get caught in a toxic cycle of overestimating how much energy I have and underestimating the effects of post-exertion malaise, a debilitating symptom of chronic fatigue syndrome, at which time your energy levels plummet and you’re left dragging your deadweight body hopefully to a bed where you can rest for several hours. As this isn’t always possible, sometimes I’m forced to interact well after my shut off valve has locked. It’s like gasping for air in outer space. To you, it probably looks closer to a mime suffocating in an imaginary box.

Would it help you to understand if I lived in a hospital? Would a hospital gown somehow put all of this into perspective for you? Would it complete the picture accompanying my narrative? Would it still be a story you’d be interested in reading?

“Still,” I say.

When I’d Love to Come, But I Can’t

Allison Jonergin
Guest Blogger

Usually I just lie. It’s not a matter of right or wrong, but rather a measure of how much damage will be done.

In fact, the easiest way is to decline the invite in the first place. Having multiple chronic illnesses makes being unable to follow through with commitments not a question of if, but when and how often.

When canceling, honesty is invariably met with skepticism and questions. Why open myself up to that kind of vulnerability?

I’d rather be mistrusted for saying I’m sick for the second time this month than for saying I don’t feel up to a visit because I’m tired and hurting.

Being sick is lonely. So you’d think being invited to hang out or do something fun would be welcomed, and most often it is.

You’ll see a huge smile spread across my face as we talk about how we each have been. Maybe this even reinforces your confusion when I cancel our plans to go to dinner the following weekend.

My life revolves around my body, in which there can be any number of flare ups at any given time, each with the power to upend my schedule. No number of good intentions can change the fact that some days I’m just a chronically ill person. Any other identity I manage to wear is temporary. So if I’m a friend, I’m a friend for a few hours. But I’m always sick.

Yesterday, I felt strong and energized. I went shopping, walked my dog, cooked dinner, enjoyed a meal with my family, and washed the dishes. To do all of those things in one day made me feel like a superhero.

But if I don’t get ample rest to make up for all of that activity, I’m a wreck. The contrast between yesterday and this morning is as sharp as the brightest and darkest brightness settings on your smartphone. I’m trudging through heavy sludge with every step; I feel insufferably sleep-deprived. An imaginary meat mallet is pelting me all over. I strain to concentrate long enough to think a complete thought.

Getting together with a friend for dinner is out of the question. It’ll be a wild success if I take a shower and spend more time out of bed than in it.

So I have to be flexible with my schedule and obligations.

You see me on my best days, when all the stars align in helping me sell this narrative that I’m a seemingly normal young woman.

The reality is I’m sick every day. Some days it’s with a migraine, other days it’s in the bathroom, still others it’s in debilitating pain from a fibromyalgia flare-up. More often than not, it’s all of these things.

In fact, I only stop to catalogue my aches and pains when someone asks me why I can’t make it.

Please accept that on my bad days, I can only take care of myself. And though I hate to admit it, even then I sometimes need help doing that.

I’d love to see you. I only have so many good days, and I want to spend them with my friends and family. I also have obligations and a health regimen to stick to if I’m going to be well enough to fulfill as many commitments as possible.

So I’ll settle for running errands, doing some pesky chores, spending time with friends and family, and walking my dog.

Hey, wait a minute. That sounds awfully similar to the scenario that got me into this mess in the first place.

*Shrug*

I overdid it. And it’ll happen again.

Bravery

Allison Jonergin
Guest Blogger

Growing up, I had this dream, this hope, in my mind of the kind of person I’d be despite any struggles I might face.

I always hoped I’d be brave. 

Before I became sick, bravery used to mean something very different.

It meant standing up for ideals, helping the needy and always being the bigger person. It meant accomplishing what I set out to accomplish, no matter how hard I had to work. I thought there would be no hurdle I couldn’t overcome with enough dedication, commitment and willpower. 

I grew up reading books about ordinary boys and girls defeating monsters and becoming heroes, and I’d be lying if I said I didn’t want to be the heroine in my own story. 

But what do you do when the monsters go to bed with you, wake up with you, eat with you and weep with you? How do you continue to be brave, every single day, when the fight is no longer a battle culminating in a glorious victory, but an extended offensive of attrition warfare?

I’ve had to bury that dream, kiss goodbye those hopes, and console the sweet girl inside me who was innocent enough to believe she could take on the world’s problems when in reality I’m struggling just to manage my own.

Because even on my best days, I am still bound to this body, and all I know is pain: relentless, all-consuming, unforgiving pain. Then there’s the mental anguish, the exhaustion, discouragement, frustration and sadness to reckon with. Not to mention the laundry list of other symptoms that keep things interesting.

When you begin each day and sometimes each task with the prerequisite of having to talk yourself into fighting to live at all, it makes for a long day.

I am alone in this fight, and yet I am never free from my monsters’ grips. They slither into the most intimate parts of my life and make a home, reminding me my body is the battleground in a war I fight behind closed doors.

When I wake up in the middle of the night writhing in pain, when I cry upon waking at the thought of having to drag my tender body into the shower, when I sit on my bed and talk myself into taking my medicine, I am reminded that no one can take over fighting for me when I get tired. 

Pain is the loneliest company I’ve ever kept, but it’s loyal. Pain doesn’t discriminate. It doesn’t care what kind of day you’ve had or how much work you have left to do. 

And so I convince myself to carry on and forgive myself for the items I never seem to cross of my to-do list.

Let’s face it. I won’t change the world. 

On my worst days, I don’t even change my socks.

My disability took any last shred of hope I had that I would be brave enough to overcome my chronic illnesses and effect any real change in this world. My disability has forcibly flipped my priorities, leaving little to no energy for the dreamer in me who wanted to paint one small piece of the future.

And so I tiptoe over the graves of the dreams I’ve buried along the way, and I hope somehow I make that little girl inside me proud simply for having the courage to keep going.

Allison Jonergin is a SUNY Plattsburgh alumna and North Country native. She has fibromyalgia, CFS/ME and endometriosis. She also deals with irritable bowel syndrome, anxiety, depression and migraines.

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This is part of a monthly series of guest blogs. Each month NCCI will choose up to 2 submitted blog posts from North Country writers on disability-related topics. This is a paid opportunity. Click here for more information.

You Have A Say

Allison Jonergin
Guest Blogger

Being chronically ill is like being confined to a hamster wheel. Your only options are thrusting forward with maximum momentum or sliding backward with a conscious lack of urgency. Some days you want to slump back into bed, opting out of the fight the day will require of you. Throw in anxiety and depression, and your will is not your own anymore. You have a say, but yours isn’t the only one.

Sometimes, rest is exactly what your body needs, but your mind needs you to act decisively, to choose life. As anyone with a chronic illness can tell you, living isn’t a passive process. You’re either fighting your illness or fighting yourself. Choose carefully.

There’s no handbook explaining how to deal with the reality of being chronically ill, day in and day out. The sooner you realize this life is going to be a never-ending campaign, the better.

In the beginning, you’re drowning in symptoms and appointments. You’re logging food intolerances and sleep patterns and trying to keep from falling apart. But soon, there is a calm, a peaceful place draped in sorrow.

Welcome to hell: breakfast is a pile of pills washed down with dissolvable probiotics stirred in water. Kidding. Well, kind of. You see, this is the part where things get better, because you’re fighting for yourself. Why? Because you’ve been to hell, and you’ve clawed your way back. Hell is where the darkness wins. Your anxiety convinces you there is no light at the end of the tunnel, that it’s not worth fighting toward making tomorrow a better day. But it is, because you’re fighting for your life. In the quiet of hopelessness, let your battle cry rise up in your heart, louder than your anxiety and depression.

In the haze clouding the likelihood that you’ll climb out of bed and face the day, lies your greatest power: decision. Loose the grips you have on fear and decide to live for your future, because unfortunately, you’re probably going to have one.

In the realm of chronic illness, one must grapple with the taunting overshadowing promise of viability. Your chronic illnesses won’t kill you, but they’ll sure make you wish they would. Despair is a sneaky devil, taking root in your deepest fears, latching onto your insecurities, your vulnerability, your shame. It gives voice to the quiet doubts you hold in secret, acting like an incubator of thoughts that disarm you of the weapons you need to fight each day you are tasked with completing.

Don’t show up to a gunfight with a knife. Bring your bazooka. Prioritize sleep. Exercise consistently (yes, especially when it hurts). Take your medicine. Eat. Visit your doctors regularly. Resist the urge to self-destruct.
You can feel sad, but don’t gorge on comfort foods that will leave you reeling in pain. You can rest, but don’t forfeit your exercise routine because you’re going through a bad flare. It hurts, but the only way it will hurt less tomorrow is if you overcome today. Each day you forfeit, the climb back to normalcy steepens. That’s worth remembering, because there are days when normalcy doesn’t seem worth the battle. You’re wrong. Normalcy is where happiness lives. Gratitude and joy fill your heart, even as your stomach rumbles. Confidence animates you, even when your limbs are stiff and sore. Smiling comes more naturally than grimacing.

Decide: Are you going to live for making today less unbearable or for making tomorrow more bearable?

You may know the diagnoses, but fight the temptation to believe the crystal ball has revealed every truth.

You have a say.

Allison Jonergin is a SUNY Plattsburgh alumna and North Country native. She has fibromyalgia, CFS/ME and endometriosis. She also deals with irritable bowel syndrome, anxiety, depression and migraines.

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This is part of a monthly series of guest blogs. Each month NCCI will choose up to 2 submitted blog posts from North Country writers on disability-related topics. This is a paid opportunity. Click here for more information.

How My Learning Disability Has Shaped How I View Writing

Gemma Tendrich
Guest Blogger

I love writing, the way you can use a few well placed words to describe the indescribable, how you can light up someone's imagination or move emotions with a few lines of ink on a page. But before that, my love lay with storytelling. Because for me, while storytelling came naturally, writing did not.

It was third grade when I was diagnosed with a learning disability that affected the way I processed reading and writing compared to other kids. It was strange for me to learn at the time. I had always loved books, I still begged my mom to read to me every night and she would write out the elaborate tales I would dictate to her and staple them together into makeshift books. It had never occurred to me that I was behind my peers when it came to reading and writing, or that loving either meant being able to read by myself or get the words down on paper with my own hands.

After I was moved into Special Education class for language arts, it became clear that others didn’t see my love for storytelling the same way I did. Other teachers would be angry that I couldn’t keep up with the group when writing journals, or for paraphrasing the notes in a group project to keep up with my partners. Kids who I had previously called friends teased me for having my mom still read to me, saying it made me a baby. It was almost like I wasn’t allowed to love reading and writing because of my learning disability.

The strange part about it was that the assumptions that others had of the kids in the special education rarely fit with the reality of what I saw. Sure, the other kids and I had trouble reading by ourselves, we would misspell words often and get frustrated at times that what we wanted to write was slow to translate from mind to paper. But all of us loved reading and telling stories. We were excited whenever our teacher would read us the next chapter of The Phantom Tollbooth, or when we got to make our own fictional diaries in the style of the Dear America books. None of us hated language arts like everyone else thought we did, we just needed help to catch up with the rest of our grade.
It was the encouragement of my Special Education teacher that started me on the path towards becoming a writer. But I would be lying if I said it wasn’t a frustrating path at times. While my love of writing and reading never wavered, through elementary, and even high school and college, I faced people who thought that me having a learning disability meant I could never be a writer, and that my passion was misplaced.

In December I will be graduating with bachelors degree in Writing Arts and Literature. My learning disability does not determine my interests, skills, or talents, but it has taught me to view reading and writing differently than some. I still see people roll their eyes at those who stumble over pronunciations when they read out loud, those who don’t understand how someone who wants to be a writer still struggles to spell “simple” words. To me, there is never a need to put someone down who is trying to read or write because it isn’t “correct” or they way you do it. I do not write despite my disability. It is a part of how I write, and it will never stop me from loving what I do.

Gemma Tendrich is currently a student and SUNY Plattsburgh where she studies Writing Arts and Literature. Originally from New Jersey, Gemma now calls Plattsburgh New York home. She has experience living with depression and anxiety as well as a learning disability and tries to incorporate aspects of these experiences into what she writes.

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This is part of a monthly series of guest blogs. Each month NCCI will choose up to 2 submitted blog posts from North Country writers on disability-related topics. This is a paid opportunity. Click here for more information.

Living For The Small Things

Gemma Tedrich
Guest Blogger

My sophomore year of college was when I felt at my lowest. I had gone off my medication after becoming frustrated with the side effects and began drifting away from my friends. I dreaded calling my parents for fear I would upset them if I admitted how bad I felt, and getting to class felt impossible most days. My depression had drawn me into a dark place, and while I was familiar with the ups and downs that came with my mental illness, it felt at times I had nothing significant to keep me going in life. I was isolated from those who might give me support and unsure what I would be able to do with my degree when I got it, or if I would even be able to graduate. Everything felt uncertain and bleak. 

I remember sitting in my dorm room and pondering why I kept going. Why was it that I kept fighting through the pain I was feeling when everything felt like an uphill battle? It took me a good deal of thinking to answer this question, but when I did I laughed out loud. When It came right down to it, the reason I was alive was because my favorite web series hadn’t ended yet, and I wanted to see how turned out. 

It sounded ridiculous to admit it to myself, because what was keeping me alive wasn’t some sought after life goal like graduating or the support of someone I cared about. It was something small and insignificant in the grand scheme of things. It was just a web series. But the more I thought about it, the more I realized how much the small things in my life had been helping me. When deep in my depression, I couldn’t focus on the bigger picture of life. Yes, I wanted to graduate and get a great job doing somewhere that I loved, but those concepts felt so unreal and far away from me on days when even getting up out of bed or showering felt like an impossible task. But it was easy for me to look forward to show that I liked. It was something to look forward to that wasn’t a distant idea that would happen years from now. Maybe it was small, but it helped me look forward to being alive. 

The web series finally ended, but by then I had already made a short list of little things I was look forward to. There was a video game coming out in a couple of months that I really wanted to try, a local band was playing a show next week that I really wanted to see, the dining hall was having my favorite dish tomorrow and I couldn’t miss out on that. They were all small things, but they kept me going while I figured out what I needed to do to feel better. 

Eventually I told my parents what was going on. I started up on a new set of medication and realized that therapy was an important part of dealing with my depression. As I began to feel better I began to hang out with my friends more, and no longer being isolated helped my mood greatly. But I wouldn’t have gotten that far without those small things I looked forward to. It doesn’t matter how small it may be, or how ridiculous it may sound, if you have little things that you look forward to, make a list of them. They can help get you through tough times and make your day a bit better.

Gemma Tendrich is currently a student and SUNY Plattsburgh where she studies Writing Arts and Literature. Originally from New Jersey, Gemma now calls Plattsburgh New York home. She has experience living with depression and anxiety as well as a learning disability and tries to incorporate aspects of these experiences into what she writes.

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This is the first guest blog in what will be a monthly series. Each month NCCI will choose up to 2 submitted blog posts from North Country writers on disability-related topics. This is a paid opportunity. Click here for more information.

Write For The NCCI Blog!

Paid opportunity for writers with disabilities in the North Country!

The North Country Center for Independence, (NCC) in Plattsburgh, New York, is looking for original writing by people with disabilities, on disability-related topics, for publication on  the NCCI Blog. http://ncciblog.blogspot.com

Each month NCCI will post up to two selected pieces written by people with disabilities. NCCI will pay writers $100 for each selected piece. Submissions should meet the following guidelines:

• 300-600 words long.

• Must relate in some way to the experiences and issues of living with physical, intellectual, or mental disabilities.

• We are generally looking for writing focused on the everyday practical, social, and / or emotional experiences of living with disabilities, not on medical research, treatments, or therapies.

Some editorial assistance and feedback will be provided, including comments and suggestions on how drafts can be improved before publication.

NCCI’s Executive Director will choose up to two pieces per month to be published. After each item is posted, the writer may submit a voucher for payment, which will be made within 30 days of receipt.

Submit drafts by email, to: apulrang@icloud.com. Or, paper drafts may be delivered to NCCI at 80 Sharron Avenue, Plattsburgh, NY 12901. For more information call us at 518-563-9058.

The deadline for final drafts is the 15th of each month.