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

Thankful for Life

If you were to ask me what I'm thankful for, I would probably tell you that I'm thankful for my family, my dog and my job. And all of that is true. But if I were to really be honest, what comes to mind is simply, "I'm thankful for life." There are so many times--even just over the past several years--that I could have died and didn't.

In the summer of 2011 I was trying to train for a sprint triathlon. (I eventually gave up on that idea because I'm so bad at swimming--and not great at running either!) I was trying to beat my previous times biking on the Huckleberry Trail, but I had left late and it didn't look like I'd be able to make it home before dark. My dad called and told me to call him when I made it to the mall and he would pick me up so that I wouldn't have to cross Pepper's Ferry Rd in the dark. (This was before they built the pedestrian bridge and also before I had bike lights.) When I got to the mall I didn't call my dad and decided to go ahead and bike all the way home because I wanted to know my time for biking that distance. When I got to Pepper's Ferry I looked both ways and was about to run across, and I heard this voice in my head saying, "Look again." I looked to my left and right there was a gray car driving with its lights off! That scared me a bit, but I'm embarrassed to say I still crossed the road a minute later and biked the rest of the way home. My parents were obviously mad that I biked home without calling them!  

There was the time in 2012 that I cut myself badly and my arm wouldn't stop bleeding for a couple hours. I was exhausted, so I went to bed and hoped I'd wake up in the morning.

There are all the times my depression tried to kill me--really, too many times to keep track of. I wrote this passage in my journal during a hard time last October that I think pretty accurately describes how I was feeling.

"I have been forgotten like one who is dead; I have become like a broken vessel. For I hear the whispering of many--terror on every side!--as they scheme together against me, as they plot to take my life. But I trust in you, O Lord; I say, 'You are my God.' My times are in your hand; rescue me from the hand of my enemies and from my persecutors!" Psalm 31:12-15

In 2015 I got Cdiff, a bacterial infection that a lot of people die from. I couldn't eat most foods because they caused internal bleeding. Then I had an allergic reaction to the antibiotic and was having trouble breathing. I remember my dad telling me, "You're stuck between a rock and a hard place because you could die from not being able to breathe, but [if you stop the antibiotic] the infection could also kill you." I ended up switching to an antibiotic that I've heard kills MRSA, and it took two rounds of that to get rid of the infection.

Some people think that 26 is really young, and in a sense I guess it is. But I feel fortunate to have lived this long when I might not have. In the past three years I've had four friends (technically two of them were more of acquaintances) pass away, and they were all in their early to mid-twenties. A lot of people live like they're immortal, and I guess there can be benefits to that. It can be fun having adventures and taking risks. And when you assume you'll live a long time, you're more likely to plan for the future. But I've seen how fragile my life and the lives of others can be, and I don't want to take life for granted.

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!