Finally, The Total Truth About Life with Chronic Fatigue Syndrome

Ok, it’s actually 30 Questions, but that just didn’t have the same ring to it for the title :).

I’ve been sick for 7 1/2 years and yet, most the people close to me don’t even understand the true extent of my illness.  It’s an interesting situation to be in.  On the one hand, I would love for them to understand exactly what I’m going through.  But on the other hand, Chronic Fatigue affects every second of every day for me- if I were to express my feelings every time I felt sick I’d be the most annoying person in the whole world!

I’ve thought a lot about how much of my illness I want those outside my home to see. The amount of disclosure of symptoms is a personal choice.  I personally choose to focus on living, not limitations.  I hate when anyone but Doug sees me at my lowest.  In a weird way it’s embarrassing, like if you took my journal and read my deepest, most personal thoughts aloud to a room full of people.  I’ll do anything so you don’t see me when I hurt so bad there are tears in my eyes or when I need help just to get to the bathroom.  Keeping that pain private is something that makes my life more livable, but it also frustrates many of my family members and friends who want to know all that’s going on.

Today I’ve filled out this questionnaire for them.  Hopefully it will give a better glimpse into the limitations I don’t enjoy discussing!

1. The illness I live with is: Severe Chronic Fatigue Syndrome and POTS
2. I was diagnosed with it in the year: 2006
3. But I had symptoms since: 2005
4. The biggest adjustment I’ve had to make is: Cutting Back.  On everything.  I had to cut back so much in school that I finished with a portfolio that will never get me a real design job.  Not that it mattered, because after I graduated I had to cut away all my dreams of being healthy enough to hold a real job.  I’ve had to put off my dreams of having children, quit any extra activities I enjoy, resign from church callings, cancel plans with friends, learn to live with a dirty kitchen floor, enjoy eating off of paper plates etc etc etc.  After 7 years I’ve never gotten used to it; the intense emotional pain of living without the life I’d hoped for has never left.  Not for one day.
5. Most people assume: I got better.  I don’t quite understand it, but whenever I see anyone who I haven’t seen for a few months they always say hello with the phrase- ‘So, You’re feeling better!’  It’s always a statement of fact, not a question.  When I set them straight they seem very confused.  I’m convinced someone is constantly spreading healthy rumors about me behind my back. 🙂
6. The hardest part about mornings are:  Remembering all over again that this is my reality- dreaming is the only time I get to live without pain.
7. My favorite medical TV show is: None.  I deal with enough doctors, I don’t want to involve the medical world into my spare time as well.
8. A gadget I couldn’t live without is: My laptop.  If my design clients only knew the state I’ve been in while finishing so many projects…. Stuck in bed and barely able to move my fingers… I have to have Doug check my work to make sure the words actually form sentences.
9. The hardest part about nights are:  Insomnia.  Without my sleeping pills, I’d go to bed around 9 and wouldn’t fall asleep until somewhere between 1-4am.  And then I just toss and turn all night.  I’ve even had a few nights where it took so long that I was still awake when Doug’s alarm went off the next morning.  I just got up with him.   With my pills I can fall asleep, but I never feel like I reach a deep sleep.
10. Each day I take __ pills & vitamins. (No comments, please):  Whew.  I don’t even know…. Probably about 25-30 right now but we’re always trying new things and taking out old ones.
11. Regarding alternative treatments I: am willing to try anything that won’t kill me.  But nothing alternative has ever really helped.  (neither has anything traditional for that matter…)
12. If I had to choose between an invisible illness or visible I would choose: VISIBLE a million times over.  I am so sick of hearing people justify rudeness with the phrase- Yeah, but you don’t look sick.
13. Regarding working and career: I’m not healthy enough to hold a job- even part time.  Trust me, I’ve tried.  That’s one reason I went back to school.  We wanted to experiment to see how big of a load I could handle without letting anyone down if I failed. (If I miss class no one is hurt but me, if I took on a big design job and couldn’t finish I’d frustrate a whole company).  So far, we’ve only found that I’m pretty much undependable!
14. People would be surprised to know: I’m usually lying when I tell you I’m having a good day.  The truth is, I hate dealing with the awkward silence that comes when I tell people the truth about how I’m feeling.   I’ve gotten really good at functioning when I feel horrible. And it’s amazing what some cover-up and a thick layer of blush can do to my pale complexion.
15. The hardest thing to accept about my new reality has been: Learning to find joy in a life I never wanted.  Growing up I dreamed of working as a designer and having kids and being the person everyone could turn to at church and doing lots of fun and exciting things with my husband.  I can’t have or be any of those things anymore.  I had to find new dreams.
16. Something I never thought I could do with my illness that I did was: Graduate from college.  I had no idea how hard school was until I had to learn while being in complete and constant pain.
17. The commercials about my illness: …No one thinks CFS is real enough to make commercials about it yet.  But they will, just you wait.
18. Something I really miss since I was diagnosed is: The independence that came with being able to drive myself more than a few blocks.
19. It was really hard to have to give up: Being able to create relationships without the awkward wall of a misunderstood illness.
20. A new hobby I have taken up since my diagnosis is: Painting.  I always felt like it was something I should learn, but I couldn’t justify putting that much time and money into something that could never turn into a career.  Little did I know that nothing I studied would turn into a career!… once I was able to accept that I was open to taking some painting classes.  Best decision ever.
21. If I could have one day of feeling normal again I would: Just one day?   Honestly, I’d probably just cry.  So hard I wouldn’t be able to get out of bed. It would be too hard to be reminded of what I could have had.
22. My illness has taught me: So many things. I’ve learned there are two kinds of people in the world- those who have been through a life changing trial (death in the family, divorce, chronic illness etc- any trial that comes with no hope of ever ending) and those who haven’t.  It seems whenever I meet someone who is really supportive it’s because they fit into that first category.  In a way it has made me grateful to be sick because it allows me to be on the supportive end for other people.

I’ve also learned that joy comes from within.  If I can’t be happy with my life the way it is now, what makes me think I’d be happy if it changed? I watch the people my age with everything I will fight my entire life to get (good health,a job, children) and they’ll be honestly distraught over the stupidest things.  If they could just have a horrible, life altering trial they’d figure out that life without nice living room furniture really wasn’t so bad after all.

That being said, happiness didn’t just come because I decided to be happy.  And it didn’t replace the sorrow.  It came with years of professional help, and it exists right alongside the emotional pain.  But it did come.  And as long as I do my part, it stays.
23. Want to know a secret? One thing people say that gets under my skin is: When people just assume.  They assume I’m using my grandma’s handicapped permit.  (yes, I’ve actually been given a ticket for using my OWN handicapped permit.  And the officer didn’t even get in trouble when I went and explained his assumption)  Or they assume that when I go in to buy compression stockings or a wheelchair it must be for someone else.  They just assume I’ve gotten better (don’t you think that if I found the cure I’ve been searching for all these years I’d let you know?) or they assume that because I’m not in a hospital bed I must be feeling pretty good.  I hate when people see me and say- ‘Wow, you look like you’re feeling a lot better!’  It’s amazing how much people will assume without ever actually asking me a thing.
24. But I love it when people: Show that they genuinely care about how I’m doing.  Even if they’re not very good at showing it- as long as it’s sincere, it’s great.  I also love it when people just treat me like me and not a walking illness.  (which is why I don’t talk about being sick very often)
25. My favorite motto, scripture, quote that gets me through tough times is: There are so many, here are a few,

26. When someone is diagnosed I’d like to tell them:  1-people who require convincing are not worth wasting your energy on. (it sounds cruel, but it’s true) Instead, learn to live your life despite what others think and you’ll find people who are worth every last bit of your energy. 2-Give yourself time to grieve for the loss of your old life.  3-Find reasons you can be happy for your new life, things that you can do now that you could never have done when you were healthy. (ex: I got to study painting.  I never could have justified it as a healthy person)  4- There is no shame in seeking professional counselling to help you find joy in your new life.  If someone implies that there is, see #1
27. Something that has surprised me about living with an illness is: How hospitals and doctors devote their effort to healthy people who get temporarily sick.  There is no place for someone who can not be cured.
28. The nicest thing someone did for me when I wasn’t feeling well was: When we were dating, Doug got a book to read to me on my sick days.  Our dates those nights would consist of him reading out loud and me lying on the couch- he never complained that we couldn’t do anything more exciting.  And after 6 1/2  years he still never does- even on my sickest days.
29. I’m involved with Invisible Illness Week because: It’s crazy how many people are sick and find no support from friends simply because their friends don’t understand.
30. The fact that you read this list makes me feel:  Honestly, a little embarrassed.  I don’t like talking about being sick.  But I’m glad you care.

(This questionnaire was found at invisibleillnessweek.com)