How to be “active” in your world when you really can’t be

Active is a relative term.

For some, it means running a marathon.

For others it means grocery shopping.

For others still, it means taking a shower.

To me, it means doing the best you can on any given day.

In my town, there’s two women who really inspire me. One I know a bit more personally, and I know she has multiple sclerosis. She lives in a home sometimes and has a great deal of assistance, but I still see her out and around town quite frequently with her family.

When I see her, I think of “active” as being out with a smile. She has one of the most encouraging smiles because I know there’s a lot of pain behind it. I know she doesn’t want to smile some days, but her personality is to do what she can to hide her suffering and share joy with those around her.

She chooses to be “active” by sharing hope and love with everyone she sees. That doesn’t mean her family doesn’t see her suffering, and that they don’t see and cry with her, because I’m certain they do. That’s what family is for. But the way she is active in the community is to allow us to believe there is hope in chronic illness, and to believe that the world is good to beautiful souls like hers.

The other woman who inspires me is a complete stranger to me. I know nothing of what troubles her, only that she travels through town on a motorized wheelchair. It looks like it is difficult for her, but she does it anyway. She is active in rain, snow, sunshine, nearly every day she leaves her house.

I’m sure this isn’t to be inspiring, but out of necessity. I’d be willing to bet that she doesn’t have someone to help her, and she doesn’t want to take advantage of community resources to drive her places.

There is such a negative stigma against using charitable organizations and I wish that was different

But whatever the reason, there she is.

And whatever the reason, she inspires me.

Because her truth doesn’t need to be mine. All I need to know is that she doesn’t let her disability keep her from being a functional human being. She remains active in the community, even if it’s just going for a “walk” or a trip to the grocery store.

The first lady walks with her family, and smiles at friends she’s known for years.

Both women remain active members of the world around them, when it would be so easy to hide under a rock and allow self pity, pain, or loneliness to take control.

What keeps those of us with chronic illnesses strong and healthier is maintaining involvement with our community, and never giving in to the darkness that tries to take hold.

However it looks for you, always remain active.


Friendship is Magic, just like the ponies say…

Making and maintaining friendships with chronic illnesses can be especially difficult. When we are children, there’s a chance that someone will just find us and latch on as a friend, or maybe we were the outgoing ones, but as we get older, there’s much more judgment and expectation from our relationships.

For myself, my illnesses are compounded by anxiety, PTSD, and being introverted, and I have an incredibly difficult time making new friends.

I’ve also found that when you become sick, and it doesn’t go away, you tend to weed out friends pretty quickly. Those who used to call weekly, or text every few days to see how you are, stop calling. New people you meet aren’t sure what to say or do, maybe because they’re meeting you in your brokenness and not your former glory.

Some people are afraid to reach out, or are so introverted themselves that they rely on us to contact them, and they don’t realize how impossible that feels some days.

On top of my anxiety, and my need for quietly controlled interactions, I have a hard time making plans because I don’t know from one day to the next how I will feel. In general, I feel much more human than I have in years, but still wear down quickly.

I’ve never been good at being the first to call or text, largely due to a debilitating fear of rejection. It started as shyness when I was young, and now has evolved into a certainty that nobody wants to be friends with a sick person.

But that isn’t the truth. Plenty of people with chronic illnesses have friends, people who love them and would lay down their lives for them.

It’s too easy to fall into self pity: “Sue has more friends than me because they raised $10,000 for her medical expenses,” “Joe is more loved because his friends brought food when he couldn’t cook,” “someone else got something, while I got nothing, why do my friends not love me…”

I find myself thinking sometimes about how society jumps at the drop of a hat to raise money for people who are diagnosed with cancer, yet when someone is diagnosed with Lupus, Multiple Sclerosis, Addison’s, etc., there is no community fundraiser, no awareness walks, no show of solidarity. Friends stick with us through the initial illness, but some of them drift away the longer we are sick.

Friendship is more important now than it ever was pre-diagnosis. We need to know we aren’t alone, we aren’t burdens, we aren’t a drain on those who love us. We know that being our friends can be emotionally overwhelming at times, especially if we are frequent flyers at the emergency room. Being our friend can be taxing.

But it also can be exceptionally rewarding! We are not just sick or disabled, we are warriors! We fight every day for our survial, and often fight louder than others for what we believe in. We know life is too short to go it alone, and cherish the people who stay with us through it all.

I’ve only been diagnosed six months, but I’ve been sick a lot longer than that. The friends I’ve made since then, and the ones who have stayed by my side are precious and rare gems.

Friendship offers hope.

If you’re a friend to someone with chronic illness, consider ways you can show your friends that they are valuable to you, that they have meaning in your life. Bring a casserole, help with chores, bring chocolate and a movie some afternoon, call, text, check in. Most importantly, let us know that you see us, and that we aren’t alone.

Community Resources, Elusive While You’re Reclusive

It is so easy to feel alone when battling a chronic illness. Getting out can be impossible some days, and exhausting on others. Our communities have a great deal of resources available to help people who are home bound, and though they’re not always easy to spot, they are there, and ready to help. Here’s a few of my top choices for help, though not an all inclusive list:

  • Churches: many churches offer meals, and many other personal services to members, and some even extend these to non members, because they see charity and taking care of each other as God’s purpose. Even if you don’t regularly attend a service anywhere, checking to see what services are offered is a great start!
  • A first stop help center: many communities have an organization (or two) that provide resources from bill money to lightbulbs for people who have an emergency. This wouldn’t be something to rely on regularly, but certainly can help in the early stages of being sick and unable to work.
  • Food banks: most food banks allow families to come in once a month for a decent supply of food. They tend to offer a variety of food items which can be combined into various meals, and around the holidays some even have bigger food items like ham or turkey.
  • Counseling centers: some state or county funded counseling facilities offer money for groceries and utilities for their clients. This is especially important for people who suffer from chronic illness because it can be essential to our mental health to see a counselor regularly. These facilities also sometimes offer a sliding fee scale, so your session cost is directly related to your income. Counseling centers are an especially valuable resource, because they also tend to know of more community resources to help in a tough situation.
  • Meals on Wheels: this is a really cool service for folks who are home bound, and offers the opportunity to have a hot meal without the added stress of cooking.
  • Grocery delivery: some communities offer grocery delivery services so you can order your groceries and have them delivered. For many of us, a trip to the grocery store will use up every spoon we have, so this can be a huge benefit. It may not be free, but it is still a great help.
  • Senior or public transportation: some areas have transportation available via senior centers or other public transportation for helping people get to the store, meetings, and doctors appointments. Sometimes it’s free, sometimes there’s a small fee, bit for those of us who cannot drive, it keeps us connected and able to leave the house.

It is so easy when we are diagnosed with an illness, or maybe several, which significantly impacts our ability to participate in daily life to feel like we are isolated and alone. Finding what resources are available in your community is important. Not only will you find mobility a bit more manageable, but sometimes the relief from stress for a few days or weeks is more valuable than anything else.

Be grateful for the charitable nature of those around you, give back how you can, but don’t feel guilty needing assistance. That’s what it’s there for!

Almost like amnesia

The house around me ticks with the quiet sounds of a sleeping home. The faucet drips, the clock ticks, and the refrigerator hums melodically. My stomach turns with the now constant nausea, and my head swims as though my brain floats in a jar separate from my body.

I do not know when this feeling became normal for me. I do not remember the first of the recurring headaches, the feeling of being separated from my body, my soul no longer part of this same functionality, my being no longer something familiar to me.

I know about my life before, I remember swimming competitively. I remember running around the track, fighting the burning in my legs, but loving the feeling of movement. I remember waking up for work, maybe doing a bit of makeup, and going in to a busy classroom excited, passionate, and full of hope. I remember playing in the yard with my daughters, throwing a frisbee or playing fetch with the dog.

But all of these memories seem like a different person in a different life. I’m like an empty shell now, tired, sick, wasted away… My brain remembers these things, but my body, oh, for my body it’s a kind of amnesia. There’s a gap between what I want to do, and what I’m able to do, and I cannot reconcile the way it makes me feel.

I want to eat, but it makes me feel sick. I remember when the nausea of pregnancy was eased by constant snacking, but now the thought of food makes me nauseated. Nothing tastes the same, and there’s no satisfaction in food. I remember loving foods like spicy chicken wings, guacamole, steak… Now the thought of anything to eat makes me tired.

I remember staying up late, laughing with my mom or my friends, not caring that it was after midnight because sleep would be restorative, and tomorrow would be a new day. Now, I’m up past midnight because I cannot sleep, no matter how desperately I want to, and I know that I will not feel rested in the morning. I will still feel this exhaustion that is more than just tiredness, physically hurts me, and lives inside my head with a throbbing, pounding, watery echo.

I remember what I used to be, but as though it was another person. My life is not what I remember it to be, nor is it what I hoped or expected.

I have to fight through this amnesia to find my new reality, new normal, and it is more elusive than the mythical unicorn. I feel like it would be easier to find the song of sirens and dance with mermaids than to understand what this new reality means for me.

There is no restful sleep, no joy in work (there is no work at all, it sets me back for days if I even try…), no running, swimming, or playing in the fall leaves. My ears hurt, my head pounds, and my stomach rolls all within the storm that has overtaken my body.

My mind suffers, and I do not know who I am.

Except I know exactly who I was, and that’s the hardest part of all. Now, I have to find out who I will be going forward. Like recovery from amnesia, I have to regain memory and build new ones… So hang on tight.

I Shouldn’t be Alive

This time last year, I was just barely home from a 4 day stay in a mental health facility. I voluntarily checked myself in, because the feeling that I needed to die was increasing by the day. I’ve struggled with depression for most of my life, but this was something much deeper than the depression I’d become used to. This was a dark and terrifying urge to do something, anything, to make my life stop.

I was afraid that I wouldn’t be able to stop myself, and while I didn’t really want to die, I sure as hell didn’t want to live. You see, I’d been sick for a very long time. I remember as far back as my first few years of college, I was tired, unmotivated, never felt rested, and put on weight no matter what I did. As the years went on, I started to think that tired was normal, but in 2014, I started mentioning to my doctor that I was tired all the time.

Like any modern doctor would, he told me that if I’d lose weight, I’d have more energy. Generally, I don’t disagree with him, but I was dieting and exercising as much as I could, but weight was still packing on. By 2015, I was complaining of being tired every time I went to the doctor. In fact, I started making appointments just because I was so tired. I knew that some tiredness was normal, as a mom of two kids in the first few years of teaching, but this was beyond any kind of tired I’d ever seen in anyone around me.

The doctors ran tests: lupus, tuberculosis, mononucleosis, everything came back clear.

I was scared when the doctor said he was looking for lupus. I knew a woman who had just died from complications from lupus. I was strangely unrelieved when that test came back normal. Clearly I wasn’t healthy, but there was no answer for me.

This time last year, 2016, I had taken a leave of absence from my job, a job I loved dearly, to try to focus on my health. I thought perhaps my depression and anxiety had just gotten out of control, so I took time off to see if that would help. Meds, sleep, therapy, nothing worked. I couldn’t drive myself to appointments. I couldn’t clean my house. I couldn’t get the kids to school every day without help from my mom and friends. I was losing the ability to function. I was dying.

The more I’ve learned over the past year about cortisol, and what adrenal insufficiency does to a person, the more I realize that it was all clear, it all made sense, and someone could have done something to help me much sooner.

The most frustrating things for me continues to be that one of my doctors checked my cortisol levels in February of 2016, and send me home, “it’s a bit low, but no big deal.” He sent me home to die.

I’ve since changed to a different medical clinic, with a doctor who claimed to know about adrenal insufficiency, but then gave me information directly contradictory to every endocrine journals I’ve read. I’ve been through two endocrinologists, and sometimes wonder if I shouldn’t find one closer to home.

But tonight, I remember where I was one year ago, sitting in the same blue recliner, wishing I was dead. I don’t ever want to feel that way again, so I fight. I fight to educate new patients, I fight to educate the community, and I fight for better healthcare for patients, instead of claiming we are crying wolf, doctors need to help us! Death due to adrenal crisis is amost always preventable, if only the health providers would listen to us. My voice will be heard so others don’t have to suffer, so others can be saved, too.

And tonight, I’m grateful to be alive.