- Chronic Fatigue Syndrome / M.E.
- Interviews
Christina's interview
How did all start?
I believe it started after I contracted mononucleosis in 1998, the infectious trigger for the disease. I thought I'd recovered, but I got progressively worse over time. I wasn't sleeping well, and I was tired all the time. I couldn't stand for any length of time, which made work difficult. But my condition was mild until 2013, when it became moderate. And while my condition continued to deteriorate, going from partially housebound to mostly housebound and partially bedbound, I didn't consider my condition to be severe until July 2016. I'm mostly bedbound now, requiring naps even when I only left the house to go out to lunch or to a doctor's appointment. Sometimes, my husband has to cut up my food for me. I'm incapable of food preparation and even light housework.
Do you already have a diagnosis? How long did it take you to get it?
It was frustrating trying to get a diagnosis, since none of my doctor's would take it seriously because there's no test and no treatment. It finally took my psychiatrist saying I fit the criteria after many years with him, maybe in 2013? After that, I started adding the diagnosis to all of my medical history forms, and it's officially in my records now.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Surprisingly, my psychiatrist has been the most helpful, as he also has training in internal medicine. He's helped me by prescribing medications to treat my depression and anxiety that also benefit my physical health. That's an improvement over the rheumatologist who said he couldn't help me, my now-retired primary care doctor who took years before starting to recommend tests and specialists for me, and the gastroenterologist who ran exhaustive tests on me but never actually listened to me.
What has been the most useful thing for you so far?
When I first started seeing my psychiatrist in 2008, he prescribed Remeron, which gave me the first good night's sleep I'd had in nearly a decade. It helped my depression and anxiety, too, but I felt like I was starving all of the time. So he changed my medications to have one drug for my mood disorders (first Effexor, now Cymbalta) and another for sleep (trazodone). Trazodone is the only thing that allows me to feel rested in the morning, but it does not guarantee that I will be able to fall asleep.
What have been your biggest difficulties?
Disease progression is difficult, losing more and more of my ability to function. My quality of life has decreased a lot in a short period of time. I'm a mother and a small business owner, and it's hard to acknowledge that I can't do my best at either of those things anymore. At least not my previous best. Constantly adjusting to the "new normal" sucks.
How has your social and family environment reacted? Have your social or family relationships changed?
My husband and son have been great, even though I know my son is often disappointed that Mommy can't do things with him like she used to. My mom, my brothers, and their families have been as understanding as they can. I've lost a lot of local friends. My best friends live far away and on Facebook.
What things have you stopped doing?
I've stopped going grocery shopping. I've stopped even being able to do laundry. I've stopped going out to lunch on Tuesdays with my mom and grandma. I've stopped our annual Black Friday shopping tradition and do all my shopping online now. I've stopped being able to even heat things up in the microwave because I can't stand in the kitchen for minutes at a time. I've stopped walking without a cane - and I've used grocery store scooters when needed, and borrowed my grandma's wheelchair when we went on vacation. I've stopped trying to conform to a "normal sleep schedule," instead listening to my body - even if that means staying awake until 5am and taking naps from 3-6pm.
What do you think about the future?
I have to maintain hope that research will find some sort of treatment that will improve my quality of life within the next 10 years. If I didn't truly believe that, I would become despondent.
So far, which years have been the best years in your life? What have you done during them?
It's really hard to remember that.
What would you like to do if you didn’t have your condition?
I'd just like to be able to do things without having to plan for them - everyday things. Go out to lunch on Tuesdays again. Go grocery shopping with my husband. Do laundry again. Take a shower where I can wash my hair and my body, and not have to alternate tasks every other night. Bake cookies. Make calzones for dinner.
If you had to describe your life in a sentence, what would it be?
I am grateful for the internet, which allows me to stay in touch with people and do things I can't do in person anymore.
Finally, what advice would you give to a person in a similar situation?
Listen to your body. Don't overdo it. Find hope in the research coming out about potential treatments that could be available in the next few years.
