In an Instant

Hiking ever since I could walk
Climbing light posts, trees and rocks
My favorite way to spend a day
Was bike and run and rollerblade
Drop in on the skateboard ramp in the street
Feel adrenaline shoot from my heart to my feet
I earn another belt in martial arts
But breaking boards was the best part

I am healthy, I am strong
I have done this all along

All this changes in an instant
You put your foot down
Try to walk but you can't
It takes all your strength
Just trying to breathe
You have to budget energy
'Cause you're held back by fatigue

Health is not always something earned
It can be gone in an instant
I have learned
Don't take it for granted
All that you've got
Health is not something
That can be bought

Photo credit: Sarah and Zack Conord

What I do with my "Free Time" as Someone with a Chronic Illness

I worked part-time as a data reductionist for almost 3 1/2 years, working anywhere from 16-20 hours

a week, depending on my health and energy level. Even though I was working a desk job and I had a required 10-minute break every hour, work took up the majority of my energy, so it could be difficult to find the energy to do anything outside of work. I had to prioritize work and "budget" my energy, which often meant missing out on social events or putting off errands like grocery shopping so I would be able to make it through the work week. Even though it was difficult to work when I was sick, I generally liked my job, and I liked to feel like a normal person and that I was doing something with my life.

This winter/spring my health got worse, and I developed a lot of new symptoms. I took what was intended to be a 3-week leave of absence from work at the end of March in order to rest and get my health back on track. However, my health kept getting worse and I kept having to extend my leave of absence. At the end of May I officially quit my job because of my health problems. I don't have an official diagnosis yet, but a lot of potential problems have been eliminated, and I know that at least one of my problems is related to my lungs.

Sometimes a friend will find out that I'm not working, or that I was only working part time, and they'll ask, "What do you do with all your free time?" Or "If you only work in the afternoon, then what do you do in the morning?" When you're healthy, these may seem like very reasonable questions. If I'm not working full-time, I must have plenty of time to do whatever I want, right?

These questions annoy me, but I try to be patient with people because I know that most of the time they mean well and are genuinely curious about what I do all day. Normally these people care about me but are just clueless about the nature of chronic illness. I was healthy for most of my life, so I know it's hard to understand chronic illness unless you've either experienced it yourself or been very close to someone who has.

One thing that takes up a lot of my time is all the medical tests and procedures I have done. These are most of the tests I've had done in the last several months.

⦁    Hida scan (Nuclear medicine imaging of my gall bladder)
⦁    Ultrasound (2)
⦁    Upper endoscopy
⦁    Colonoscopy
⦁    CT scan (2)
⦁    Bloodwork (I lose track, but several times)
⦁    EKG (5)
⦁    Urinalysis (3)
⦁    Chest X-rays (2)
⦁    Tilt-table test
⦁    Echocardiogram
⦁    Pulmonary function test
⦁    MRI

Add to this the appointments with my primary care doctor, various specialists, ER trips, and traveling out of town for doctors' appointments.

View of Richmond from VCU Hospital

I also need to sleep a lot to be able to even semi-function. This means sleeping 10-11 hours at night, plus taking a nap in the afternoon. I also have to take time to lie down even when I'm not officially napping because I get out of breath from walking around and getting ready for the day, and I have trouble breathing if I sit up for too long.

Another thing that takes up time is making doctors' appointments, calling up nurses to ask questions, and messaging my doctors on MyChart. Since I'm seeing a pulmonologist now, every morning and evening I use a peak flow meter (measures breathing) and inhaler, and it took me a few days to figure those out.

Inhaler and peak flow meter

I also spend time looking up information on my various medical conditions. Sometimes people say, "Don't Google medical stuff; you'll scare yourself!" There is some truth to this, and sometimes I do spend too much time Googling possible diagnoses. But some amount of internet searching is necessary, especially when I have rare illnesses that my doctors aren't familiar with.

I think that some people who ask what I do with my free time  may just want to know what I do for fun. So a better way to word the question might be something like, "What are your hobbies/interests?" or "What do you do to keep from going crazy?" There are a lot of my old hobbies that I'm either unable to do now or am very limited with, like hiking, biking and traveling. I still like being outside, and this spring I started photographing whatever animals happen to be in my yard, which is typically frogs and birds. I like playing with my puppy, Maple, journaling, and watching nature and travel documentaries. And occasionally, when I am feeling good enough, I write blog posts like this!

What it's Like Being Sick for 3 1/2 Years

I got Cdiff (a bacterial/intestinal infection) in the spring of 2015, and although I got rid of  the infection in a few months, I'm still dealing with the effects of the Cdiff. (You can read more about my experience with Cdiff in this post.) I have post-infectious IBS, probably as a result of the Cdiff damaging my small intestine. I have gradually been able to eat more foods than I used to be able to. But the bigger problem for me is Chronic Fatigue Syndrome, which I've had ever since I had Cdiff. (Chronic Fatigue Syndrome is also known as Myalgic Encephalomyelitis or ME. Even though I prefer the name "ME" because "Chronic Fatigue" gives the false impression that it's just about being tired, the name hasn't really caught on in the US, so I generally call it Chronic Fatigue because that's what my doctors have called it.)

I haven't always been sick

Climbing a tree in WV, 2008

I was healthy for most of my life. Being sick isn't normal for me. And it frustrates me that my newer friends (which includes most of my friends) never knew the healthy version of me. I remember a high school youth leader calling me "Tigger" and "Jumping Bean" because I was energetic and always jumping around. My favorite thing ever was riding my bike. I would frequently go on 15-mile bike rides (or sometimes longer) on the Huckleberry Trail. I biked to class a lot when I went to Liberty. I also liked running, hiking and climbing trees.

It's not just being tired

Chronic Fatigue is a deceptive name, because it is a lot more than just being tired. Fatigue is just the symptom that happens to be the most constant for me. Here are just a few of the symptoms I sometimes have:
⦁    Fatigue (exhaustion, being physically tired, mentally tired, sleepiness)
⦁    Muscle weakness, particularly in my arms (To the extent that I sometimes have to take a short nap after washing my hair, and if I don't, my arms will shake)
⦁    Dizziness
⦁    Sensitivity to light and noise (Sort of like a migraine, but without as much pain)
⦁    Blurred vision/eyes won't focus
⦁    Headaches
⦁    Brain fog/trouble thinking

Add to this a whole bunch of stomach/digestive problems and other symptoms I don't consider directly related to the Chronic Fatigue, like having trouble breathing most mornings. I don't always feel awful, but I rarely feel good. It's a good day when I'm just a little tired and having trouble breathing!

It's all-encompassing

I have limited energy, so I work part-time (I'm currently working 19 hours a week). Because I only work part-time and have medical bills to pay, I don't have money to pay rent, so I live with my parents. This isn't completely a bad thing. I normally like living with my parents and my puppy. But I wish people understood that I live at home because I don't have a choice, and not because I'm lazy and trying to bum off of my parents.

It affects work

I'm a data reductionist, and overall I really like my job and it's a good fit for me with my health problems. It's part-time, I don't have to be on my feet a lot, I have a required 10-minute break every hour, and my supervisors normally don't have a problem with me calling out sick. But I recently had to turn down a promotion to lab proctor because it requires working 27 1/2 hours a week, plus an occasional Saturday, and it's not physically possible for me to work that many hours right now.
Normally I can make it to work and manage to get through the day, but sometimes it is hard to work at a computer when the fatigue causes my vision to blur or makes me think more slowly. And I don't have much energy left after work.

Doctors don't understand

Frequently, doctors don't take my symptoms seriously. And it probably doesn't help that I'm just not a dramatic person, so I may downplay the seriousness of my symptoms or joke about them. A lot of doctors have never heard of Myalgic Encephalomyelitis, which is not entirely their fault because, as this article by ME Action explains, it just isn't normally taught in medical schools. There is also a lot of misinformation about Chronic Fatigue Syndrome, so doctors sometimes suggest common treatments (such as graded exercise therapy) that can be harmful for some people. Sometimes going to doctors just seems to make my health worse and use up my money, which makes me want to avoid them. I had a doctor recently blame my fatigue on depression and not believe me that I'm not depressed. (I've been depressed for a lot of my life and had plenty of depression-related fatigue, but this is different.) I'm sure it is hard for doctors to deal with patients with chronic illnesses that they can't cure or understand. I just wish that they would be willing to refer me to specialists when nothing much shows up from normal check-ups and blood work.

Fear that people won't believe me

Since Chronic Fatigue is an invisible illness, I look reasonably healthy, so sometimes friends and acquaintances don't believe that there's anything wrong with me. Or they think that I'm exaggerating the seriousness of it. I have good days, and sometimes even good weeks or months, so this confuses people. I've also gotten good at planning ahead and  pacing myself. So if I'm able to make it to an event, it's normally because I've rested a lot and skipped doing other things in order to make it.

Isolating and lonely

Sometimes I'm unable to make it to work, church, small group or other events because of my health. My friends seem happy to see me when I make it to church or another event, but when I don't, they rarely check up on me, so I wonder if I was missed. I question whether my friends are really my friends when they're not always there for me in the way I wish they were. That being said, I'm sure it is hard to be a friend to someone who is sick, especially when you haven't experienced it yourself. Most people my age (and even older) haven't experienced chronic illness, so they just don't understand it. It is also possible that I just have unrealistic expectations for my friends.

Frustrating when people try to give advice

A piece of advice I get sometimes is to exercise more. I love biking, hiking and other types of exercise, and people have no idea how badly I want to exercise. But part of my illness is post-exertional malaise, which means that even mild exercise or normal activities like getting ready for work can make my symptoms worse. The other day I took a 20-minute walk, and then I had to lie in a dark room for a while because it gave me migraine-like symptoms. Sometimes I can tolerate more exercise, but it just depends. I know people are just trying to be helpful, but what helps one person (exercise, diet, more or less sleep, etc.) won't necessarily help someone else. This doesn't mean I don't want anyone to ever give me advice. I just wish people would think before speaking and not make me feel guilty for not always taking their advice.

Hard to plan for the future

One of the difficult things is not knowing whether or not I'll eventually get better. I don't know if I'll be better within a couple years, if my health will stay about the same, or if it will get worse and I'll have to be in a wheelchair or bedbound. Will I ever be able to work a full-time job? Will anyone want to date or marry me if I'm sick? How will I take care of kids if I barely have energy to take care of myself?

It's taught me not to take my health for granted

I have learned to be thankful for the good days and small improvements in my health. The fact that I was able to go to Iceland for 5 days last February and go hiking was basically a miracle!
Being sick has given me more compassion and understanding for people with chronic illnesses. I cannot imagine being sick for your whole life!

When I was healthy, I always thought that good health was something I "earned" by eating healthy and exercising, or that maybe I just had good luck. I thought that at least some sick people were to blame for their illnesses--that they were doing something wrong. But things aren't always that simple. God gives good health, and sometimes he takes it away. (Job 1:21)

I share all of this because I want people to believe me and understand me. I feel like I tend to repeat myself a lot in conversations with friends because they just don't get it. But I don't at all want my illness to be my identity, and I don't want to be thought of as "the sick person." In a lot of ways, I'm still the same person I always was. I still love going on adventures and being outside. I just have to be a little more creative and come up with adventures and outdoor activities I can do.

It's not all bad

There are some good things that have come from me being sick. If I was healthy, I probably wouldn't be living with my parents, and I wouldn't have gotten involved in Northstar Church or the GAP group or met a lot of my friends. I wouldn't have gotten to be with my dog, Mandy for the end of her life. I wouldn't have gotten to live with my puppy, Maple. I might never have worked at the job I've had for the past three years. I'm sure there's a purpose for what I'm going through; it just might be a while until I'm able to see that purpose.

With my lap puppy, Maple

For Further Information:

https://www.meaction.net/2016/06/08/medical-school-students-learn-little-about-mecfs/
https://www.verywellhealth.com/myalgic-encephalomyelitis-me-715663
https://www.verywellhealth.com/do-i-have-chronic-fatigue-syndrome-715822

What a Trip to Iceland Means to Me

Thingvellir National Park

A week ago I got back from a 5-day trip to Iceland with six of my friends from GAP (Northstar Church's Graduates and Professionals group). It was a really fun trip, but it meant more to me than just an adventure in another country.

It means I have friends.

Almost two years ago I had to go to residential treatment because I was depressed and considering suicide. Part of the reason I was so depressed was because I was lonely because I had lost most of my friends from Liberty and had almost no friends my age and stage of life who lived nearby. But now I have friends to go on adventures and just have fun with.

It means it's possible for my health to get better.

Another factor that led to my depression was being frustrated and discouraged about my health problems. I got Cdiff (a bacterial/intestinal infection) in 2015, and I'm still recovering, which means I have post-infectious IBS and Chronic Fatigue. (You can read more about my health problems in this post.) At times my lack of energy has kept me from doing normal activities with friends, and even now I have to plan ahead and "budget" my energy so I don't run out before an event or activity I want to attend. I also haven't been able to travel overseas because there are a lot of international foods I can't eat because I have stomach problems. This has been pretty frustrating for me because I feel like I was made to travel--whether that means living overseas someday or just taking occasional trips overseas.

I have had more energy since this fall, but it is still not a "normal" energy level. For example, I generally only work 18 hours a week. This fall my friend Ezra found a good deal on airfare and decided to lead a trip to Iceland. After doing a ridiculous amount of research and sending Ezra lots of e-mails, I took a big risk in November and I bought my ticket for Iceland.

When it got closer to the trip, I started worrying about how my health would be on the trip, particularly whether I'd have energy for all the hiking we planned to do. I asked my small group to pray for my health and energy on the trip and found out later that my mom's small group was also praying for me. God definitely answered those prayers! I had an unusual amount of energy and, for the most part, was able to keep up with the rest of the group. On our last full day I even did a 6 km (3.7 mile) hike to a waterfall through deep snow and ice! I was exhausted and dizzy at the end, but I did it. My friends were good about checking up on me during the hike to make sure I was okay and waiting for me to take breaks to rest. I also stayed healthy during the trip and didn't have any major stomach problems.

I am so thankful for even a short trip overseas because I felt like I was going to lose my mind if I was stuck in the States any longer! This was my first time overseas since my internship in Romania in 2014 and since I got sick. I don't know whether or not my health and energy level will continue to improve, but at least I know now that it's possible for it to get better.

For anyone who wants a more detailed account of what we did in Iceland, you can check out Ezra's blog. 

Photo credit: Adam Hines 

Is Life Supposed to be Fair?

When kids are young, parents tell them, "Share your toys." "Be fair." "Play by the rules." Teachers tell kids, "Don't cut in line." Children are quick to complain and tattle if someone cheats in a game or doesn't wait their turn. It is ingrained in us that life should be fair.

At some point, maybe when we're a teenager, something doesn't go the way we think it should. Maybe we don't get what we think we deserve, and we complain that it's not fair. Our sense of fairness may be very subjective, but it's there nonetheless. Someone will inevitably respond, "Well, nobody ever said life was fair." But if life wasn't meant to be fair, why do we teach fairness to children? Why do we have such a deep desire for fairness in our own lives?

What happens when the sense of unfairness is about a deeper issue?

Why do some people have good health that they may take for granted, while other people have serious health problems for their entire life?

Why does one person get cancer and another person doesn't?

Why do some people question and struggle with their sexual identity and other people have always known their orientation and never give it a second thought?

Why do certain addictive behaviors enslave some people while they don't appeal to others?

Why does one person struggle with depression for years and is healed, while another person struggles and dies from suicide?

Why does God heal some people and not others?

Why do some people ask for help and get it, while other people are ignored or rejected?

I believe that God actually built into us this desire for fairness. He created a perfect world, but when people sinned at the Fall, everything got messed up. (Genesis 3)

The unfairness sucks and it hurts and I hate it. But the hope is that it won't last forever. Someday there will be a perfect world where everything is made right. But right now we're stuck in the in-between. Seeing how things should be, and they're so far from that. And so we wait and seek fairness and justice where we can. Things will never be perfect on this side of heaven, but maybe they can be a little bit better.

What I mean when I say I'm tired (And other updates on my health)

Anyone who has known me for a while knows I love being outside, especially hiking and riding my bike. I used to go on 15-mile bike rides pretty regularly, and occassionally 20-mile rides. But that all changed when I got Cdiff in the spring of 2015. (Cdiff is a bacterial/intestinal infection. I talk about it more in this blog post.) The Cdiff was gone after a few months, but it took all my engergy with it. I was officially diagnosed with Chronic Fatigue Syndrome just a few weeks ago, but I'm pretty sure I've had it for a couple years.

Sometimes I'll tell someone I'm tired and they'll reply with "I am too." I know they are just trying to be understanding, but sometimes this frustrates me because I feel like they don't really understand what I mean, and I don't always have time to explain myself. So here are a couple of examples . . .

The other day I got up for work, and I could not get myself to wake up. But I got up and ate breakfast. Still tired. Took a shower. Still tired. Had caffeinated tea. Still tired. But I went to work. Had lunch. Still tired. Took a walk. Still tired. I finally had to leave work an hour early because I was too tired to concentrate on my work. Fortunately, I normally make it through a 20-hour work week, but that is pushing myself.

On Saturday I wanted to ride my bike in the afternoon and hang out with friends in the evening. I slept 12 hours the night before and was feeling pretty awake when I finally got up. I took a shower, and it made my arms so tired and weak that I had to take a short nap afterwards. Then I went on a half-mile bike ride around the neighborhood. When I got back I realized I was shaking. I used to get like that after 15-mile rides! So I took another nap and then hung out with friends in the evening. So I was able to do everything I wanted to do, it just took a lot of resting and saving up my energy.

I know that many people who have Chronic Fatigue and other illnesses have much worse fatigue than I do. Some people are bedridden and can't work at all. So the point of this post is not to say, "Look how bad I have it." I just want to point out that being tired can mean totally different things to different people. And Cdiff can totally mess up your health and take a long time to recover from.

But some good news--my stomach has been doing better lately, so I am finally able to eat some more normal foods! 

Light for Life

Life is going nowhere

What is hope?

Do I dare reawaken buried dreams?

Emptiness and loneliness are what I know

And life means death to me       

 

I stare at the pills

But I don't have to take them

The gun calls to me

But I won't listen

The rope tries to pull me

But I resist

The knife beckons me

But it's not my only option

 

Friends cannot be found

But someday I'll meet them

Health fails

But I'll learn to accept it

Dreams, like bulbs

Are buried in the ground

But someday they'll break through the surface

Buds will open, flowers bloom

When the path to hope is blocked

It's found in His life        

Darkness all-encompassing

Can't keep out the rays of light

The path to life seems shut off

But His arms are still open wide

Healing is elusive

But it's found in His wounds

He will guide me in the path of life

For He is my Light

"You make known to me the path of life; in your presence there is fullness of joy; at your right hand are pleasures forevermore." Psalm 16:11, ESV

Thoughts on my Health--or Lack Thereof

How it all started . . .

I've had pretty good health for most of my life. I got sick more often during my last few years of college-- usually strep, bronchitis or just a cold. But things didn't really get bad until about a year ago. I was gradually getting stomach aches and heartburn more often, but things really got bad over spring break of my last semester of college. Bad stomach aches, a fever, and other symptoms you may not want to know! ;) I was scared that I had cancer. I went to my family doctor and a gastroenterologist, and they both thought I had Ulcerative Colitis, or possibly Chron's Disease. Long story short, after some tests, we found out I actually had a bacterial infection called C diff. (Chron's and Colitis were ruled out, fortunately, but not until a few months later.) The infection was really hard to get rid of; it took a few rounds of antibiotics. The antibiotic that finally killed it after 3 or 4 months (Vancomycin) is one that I've heard is used to kill MRSA!

 

How did you get it? 

That is what everyone wants to know. The short answer: I don't know! But here's what I suspect. Last fall (2014) I was on antibiotics for both strep throat and bronchitis. The antibiotics probably killed off a lot my good intestinal bacteria, making me more susceptible to infections. I could have gotten the Cdiff from anywhere-- a public restroom, a doctor's office, a shopping cart . . . I wasn't taking a lot of probiotics when I was on antibiotics, and probiotics are needed to repopulate the good bacteria. I tried to have a cup of yogurt most days, but that was not nearly as much probiotics as I needed.

 

Some people don't believe I'm sick

 

Senior pictures while I was sick! I prayed so much that I would be healthy enough for pictures. This was a better day.

I used to think that mental illness was the only kind of illness that people didn't take seriously. Evidently that's not true.

"But you look healthy!" "Maybe it's in your head." These are just a couple of the comments I've gotten. I think people are normally well-meaning; they just really don't get it!

And just a piece of advice: If someone tells you they can't eat a certain food, don't pressure them to eat it! Most likely, they are not just being a picky eater. People don't just get mild stomach aches from eating certain foods. Some people get ulcers, severe acid reflux or allergic reactions.

Don't take your health for granted

 

I used to be in pretty good shape and get a lot of exercise. In middle school and high school I did martial arts. Over the past several years, one of my favorite things to do has been going on 15-mile bike rides. It's been a long time since I've ridden my bike that far, but I'm thankful that I can go on short bike rides sometimes. I have also gradually been able to eat more foods.  

Learning to do what's best for me

Sometimes my health problems have really limited and complicated my social life. I am someone who likes to keep my commitments; if I say I will be somewhere or do something, I want to do what I said, if at all possible. Sometimes I have to cancel my plans at the last minute, which is something I hate to do. I know that if I push myself too much, I will get overtired and be more likely to get sick. To people who don't understand, it might look like I don't keep my commitments.  I have had to learn not to be controlled by other people's expectations. I know my body better than anyone else does, so I know how far I can push it and when I need to rest. 

There is no quick fix or one-size-fits-all solution

Gluten-free, dairy-free, etc. doesn't help everyone. It may be worth a try, but it's not a guaranteed cure for every problem. Medications or supplements that help one person may not help someone else, because everyone is different.

One of my dad's friends said I should go to a group home that helped one of his relatives who was anorexic. I'm glad that it helped her, but I'm not anorexic. I'm skinny because most foods make me sick. I have been trying for a while to gain weight, but it doesn't work very well because my body won't digest a lot of what I eat or absorb the food's nutrients.



Hopefully in my next blog post I can look at some ways to avoid getting Cdiff.