September 13-19 is National Invisible Chronic Illness Awareness Week. I love this. Invisible illnesses are a real part of many people’s lives, but so few people know about them. Because they are invisible, they are often considered shameful, and they are not talked about. Often, people assume it’s just a matter of “trying harder.” They’d never say a person in a wheelchair should “try harder” to walk, or that a person with Down’s Syndrome should “try harder” to think, but when there are no visible markers people assume the illness can be more controlled. I’ll be participating in this meme several times. If you participate, please link up to your blog below in Mr. Linky below! (This is my first go with Mr. Linky, so tell me if it doesn’t work). *EDIT: Mr. Linky is not working, so I am removing him. Please put your links in the comments!* I’d love to read about other people’s journeys!
1. The illness I live with is: Chronic Fatigue Syndrome (CFS). This means I am abnormally fatigued all the time, and sometimes debilitatingly so, regardless of how I eat, sleep, exercise, etc. On a related note, I need more sleep than the average person. There is nothing that shows up in bloodwork, etc., that can explain this fatigue.
2. I was diagnosed with it in the year: 2008
3. But I had symptoms since: 2004 (at least)
4. The biggest adjustment I’ve had to make is: quitting my full-time job that I spent 4+ years preparing for and the work of which I loved. I couldn’t keep up the pace. It made me so exhausted to be on a fixed full-time schedule, without being able to take days off when the fatigue was too strong, without being able to take breaks when the fatigue hit hard, that I was only barely surviving. Due to the amount of sleep I needed and my commute I had about 2 hours every night to eat dinner/see my hubby/do anything for myself, and I was still not sleeping as much as I needed. All weekend I slept to catch back up. I could not do anything outside of surviving. Four months later, I’m still recovering from the fatigue I built up over the two years I was there.
5. Most people assume: that I just party too much, or that “everyone gets tired, you learn to deal with it.” Since everyone gets tired to a lesser degree, they assume I’m just being a drama queen about my fatigue.
6. The hardest part about mornings are: losing them so I can sleep enough. I’m a morning person, but I need so much sleep I rarely get the chance to get up and use it. I hate that I either lose my mornings or sacrifice the rest of my day.
7. My favorite medical TV show is: House. I love the sarcasm, even if the medicine is crazy.
8. A gadget I couldn’t live without is: my computer. It lets me do so much without having to build up the energy to leave home.
9. The hardest part about nights are: when the insomnia hits. I know I will not be able to function the next day without sleep, and that it’s a crapshoot even if I do get sleep. But you can’t force yourself to sleep.
10. Each day I take _1_ pills & vitamins. (No comments, please) I now take a multi-vitamin. There are no meds for CFS. Multi-vitamins don’t help, but I figure they can’t hurt.
11. Regarding alternative treatments I: don’t know of any, other than to pump myself full of supplements and hope it helps. I hate taking pills so much. I gag. And I’ve yet to find anything that helps. So why bother?
12. If I had to choose between an invisible illness or visible I would choose: visible. No doubt. See above. People believe you when your illness is visible.
13. Regarding working and career: I can choose between having a career and having anything else in my life. I hate it. Even saying that feels like weakness to me. I fought tooth and nail against leaving my job. Finally, I coudn’t keep going anymore. I was going to collapse. I miss it. A lot.
14. People would be surprised to know: I hate sleeping. It feels like a waste of my life. Spending half of your life unconscious is not a great thing. Most people are jealous of how much I “get to” sleep, or that I “get to” take naps now. I hate them. But it’s either take them, or spend that time and the rest of the day as a zombie.
Another surprise: I can have a horribly fatigue-y day, where I cannot string simple sentences together, and simply standing a few seconds is enough to exhaust me, after weeks of great sleep. The fatigue is not necessarily related to anything within my control. I can make it worse by not sleeping, but I can’t make it all-the-way better by sleeping.
15. The hardest thing to accept about my new reality has been: I cannot live the life I imagined I would. Being an engineer (or engineering student) was a huge part of my identity. I’m still trying to figure out who I am now that that possibility is basically gone. (Yes, there are million in one chances I could go back somehow to an inferior set up. Yes, I could find something in a less-appealing field. That is not what I want. I had what I want, and CFS kept me from keeping it.)
16. Something I never thought I could do with my illness that I did was: Nothing yet…since I’ve been diagnosed I have been surviving and recovering from that survival.
17. The commercials about my illness: There are none. Very few people have heard of CFS, and of them many don’t believe CFS exists.
18. Something I really miss doing since I was diagnosed is: not having to think about sleep. It is my biggest consideration in life. Every idea, every invitation, I consider with regards to if I will be able to balance my sleep around it. Related to that is my energy balance. I only have so much energy, and it is not enough to have a full day of activity, even on a good day. So any commitment has to be considered with respect to if I will still be able to get done what I need to.
19. It was really hard to have to give up: the freedom to just live without planning every action.
20. A new hobby I have taken up since my diagnosis is: blogging. Online support rocks.
21. If I could have one day of feeling normal again I would: Silly question. I do have individual days of feeling normal (2 in the last 2 years). It’s not individual days that kill. It’s the never-ending-ness of it.
22. My illness has taught me: how wonderful my hubby is. No matter how many people tell me it’s just weakness making me tired, or to get over it, he is always there to tell me it’s not my fault and support me in what I need.
23. Want to know a secret? One thing people say that gets under my skin is: “I used to need a lot of sleep, too. Then I learned how to function without it.” This is not what everyone goes through. Saying this just means that you don’t think there’s something actually wrong, and that I’m just weak.
24. But I love it when people: believe me. Just believe me. Don’t give me a doubtful look. Don’t pepper me with incredulous questions. Just believe me, and I will be so grateful. (Honestly curious questions are fine and appreciated)
25. My favorite motto, scripture, quote that gets me through tough times is: “You are not weak!” from my hubby.
26. When someone is diagnosed I’d like to tell them: It is real. It does suck. You may have to reshape how you’ve thought about your life. But you can live with this!
27. Something that has surprised me about living with an illness is: how many people have no idea I’m sick, and seem to equate how much I do to how little I must be sick.
28. The nicest thing someone did for me when I wasn’t feeling well was: letting me sleep and doing what needed to be done for me.
29. I’m involved with Invisible Illness Week because: if these invisible illnesses are in the public mind, maybe we won’t find them so shameful anymore or view them as just weaknesses. We can’t accept something until we understand it!
30. The fact that you read this list makes me feel: Hopeful. That understanding will spread.