I haven't always been sick
 |
| Climbing a tree in WV, 2008 |
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
