The Unpredictability of Chronic Illness

By Allison Jonergin

Having fluctuating symptoms means I might work for a few hours but use the drive-thru at the pharmacy on the way home.

It means I may walk into a grocery store feeling okay but walk out feeling desperate for a rest. I sometimes park in the furthest parking space so I can stretch my stiff legs, and I sometimes park in the handicapped spot.

It means I get irritated easily when my pain feels out of control, but may seem fine on the outside.

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Given that, my decision-making is typically geared toward lessening pain and conserving energy.

What does that look like? It looks like going to bed early and sleeping in. It looks like microwaved meals and a messy home. It looks like my dog’s brown eyes staring up at me, hoping today is the day she gets a walk. It looks like turning down an invitation because there isn’t enough time in my schedule to recover from the event afterward. It looks like I live in my bed.

So I’m protective, I’m stubborn, I’m sometimes hostile when faced with doing something I know will pique my pain and take days to recover from. I just want to live in this sacred space where my symptoms are a part of my life but don’t rule it.

There are times when I don’t want to treat my body lovingly. I avoid resting during the day. I eat the foods that trigger aggressive symptoms. I delay doing the exercises that help in the long run. Why? I get tired. I get tired of living a life dictated by health issues. I get tired of being responsible with my body. I lash out in anger at it for trapping me in a cycle of pain and exhaustion. I decide a burst of freedom is worth the onslaught of symptoms I’ll suffer later.

I’m usually wrong.

I’ve learned it’s better to live a life in which I employ my preventative measures steadily and with persistence. The only way to win the battle is to fight in the first place.

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Wheelchair Running

By Amber Morgan

Hello, my name is Amber Morgan. My pronouns are she/her/hers. I am a disabled person. I have Cerebral Palsy. I am also a trans person. I am a trans woman. I am also a local athlete. I am a runner. I race in a wheelchair alongside other wheelchair racers and runners on foot. I have also been an activist locally and on the state level for the LGBTQ community, the mental health community, and my disabled community.

What I want to mention in this blog post is my work being a disabled athlete here in the North Country. I started my running journey 3 years ago.

I was really struggling with my depression and where I fit in. A friend talked to me because they really noticed this and felt very uncomfortable with seeing the path I was taking.

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We talked and my friend suggested I get involved in sports, especially running. So I started. I only had a hospital style wheelchair not built for running or going quickly. I trained for a bit but I wasn’t consistent. So with some encouragement from other friends I decided I was going to sign up for my first race … the Burlington Color Run. I did that race which was a lot of fun. It was fun because you get powdered paint thrown at you at paint stations you run through.

That next year I signed up and ran 12 races having the same wheelchair. I knew I needed a new, better, more fitting chair that would enable me to run faster and easier. I worked with a few friends to get the wheelchair and got it this past June. That June I signed up for my first major race and 5k. I signed up for the Friehofer’s Run for Women in Albany.

This is a 5k where there is everyone from around the world elite runners down to runners like me just the casual runner. I finished that race and earned myself a personal best time by twenty minutes.

Why am I sharing this? Well simple. This race is my hardest race to date. The first mile and a half was all uphill. It was a challenge … a huge challenge way over my head. I took that challenge on.

Living a disabled life we have challenges.

We have obstacles or things we have to overcome. Life isn’t easy but at the end of the day we need to keep pushing. Keep fighting. Push on through those obstacles so that when we cross our own finish lines just not in a race we can be happy. We can rest our head on our pillow at night in bed knowing that we pushed our limits to test. We can show people that despite our disabilities we can do amazing things.

Click here if you would like to contribute a blog post for the NCCI website.

Living with Fibromyalgia

By Allison Jonergin

Having fibromyalgia is constantly feeling like yesterday was leg day. And also back, chest, arms and shoulders day. It feels like a pulled muscle and dropping keys because I forgot I was carrying them. It’s being unable to concentrate and feeling exhausted after having one casual conversation. It’s not just forgetting an item on my To-Do list. It’s forgetting I have a To-Do list.

Fibromyalgia is going as long as possible between loads of laundry because I struggle to lift and carry the basket. It’s hurts to go up and down the stairs to get to the laundry machines. Sometimes I forget I even have clothes in the wash.

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Living with fibromyalgia is planning a get together well in advance and rearranging my activities for a few days to accommodate the exertion. It’s napping beforehand to forestall the inevitable storm of pain and exhaustion. For days afterward, my mission will be to sleep as much as possible. I’ll feel like I have the flu and no matter how much I sleep, I don’t feel rested. Fibromyalgia is simultaneously hating taking medicine and relying on them to survive the day. It’s panicking and experiencing pure chaos when hanging out with friends bumps a dose. This only exacerbates the pain that follows an event like that, the kind where lying still long enough to fall asleep feels like a torture tactic.

Sleeping can either feel like the most luxurious thing in the world or totally unrefreshing. I’ll lie in bed even if I can’t sleep because I feel too tired to move. Other times, I’ll wake up and massage my leg muscles before I feel comfortable putting any weight on them.

Fibromyalgia is going shopping as quickly and infrequently as possible. If an item is hard to find, I abandon it and move on to the next. Getting home, I feel I’ve survived a physical and mental ordeal. Opening the car door and carefully swinging out my sore legs one at a time is easily one of the most painful parts of my day. I never know how stiff, sore and worn out they’ll be or how long I need to sleep before I’ll feel up to moving again.

Fibromyalgia can feel like my arms are burning off of me and my legs are lined with electric fencing. My joints each feel as though someone has hammered a nail into them. Reaching, bending over, squatting, pushing and pulling all feel like I’m putting a flame to my skin and holding it there.

I’ve lived with fibromyalgia for over five and a half years now. Reducing the amount of work I have to do is the best way I combat the pain. I implement laziness haphazardly and sometimes strategically. I take my medicine and go for walks. I reduce the stress in my life and calm my reaction to it when it cannot be avoided. Most importantly, I strive to survive. It doesn’t happen by accident. Living takes a lot of work, but it’s worth it.

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.

Click here if you would like to contribute a blog post for the NCCI website.

Share Your Stories!

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Do you have a story to share about living with a disability in the North Country?

NCCI is looking for original writing by people with disabilities, on disability-related topics, for publication on the North Country Center for Independence website.

Each month NCCI posts up to two selected pieces written by people with disabilities. NCCI pays 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.

* Topics might include:

* Accessibility, good or bad experiences.

* Services or programs that are important to you … how they work, how they can be improved.

* Explaining aspects of your disability to readers who may not be aware.

* How your disability affects your personal relationships.

* Disability experiences in schools, workplaces, or businesses.

* Tips and advice for others with disabilities.

Some editing and feedback may be provided, including comments and suggestions on how drafts can be improved before publication. We will let writers know if and when their pieces will be published. After each item is posted, the writer may submit a voucher for payment.

You can end 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.

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.

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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.

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.

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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.

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).

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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 hyper-aware 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.

Unrest, a documentary that follows a woman with CFS/ME, aims to cultivate more publicity and research funding for this disease. What’s so effectively illustrative about this film is that it follows someone whose only health issue is CFS/ME. I have 13 chronic health issues. So many in fact, I spent an entire blog detailing each of them and still managed to leave one off the list: Sorry, myofascial pain syndrome, I guess I was ready for the time we’ve spent together to come to an end.

To be able to see how this one particular disease affects every area of someone’s life was validating. Don’t let others make you feel shamed when you need to rest and then rest some more. Fatigue is debilitating too.

Unrest. (n.d.) Retrieved from https://www.unrest.film/

What is ME/CFS? 2018, July 12. Retrieved from https://www.cdc.gov/me-cfs/about/index.html

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 by Allison Jonergin:

Mental Illness and Coping in Relationships

By Gemma Tedrich

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.

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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.

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

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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

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.

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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: