Prominent bloggers were asked to do this last week for Invisible Awareness Week (September 11-18th). I was not among them. LOL But it looked interesting to me, cathartic even, and I wanna do it too!
1. The illness I live with is: Chronic Fatigue Syndrome. I also have Insulin Resistance.
2. I was diagnosed with it in the year: I was diagnosed with CFS in 2004. My God has it really been so long ago?
3. But I had symptoms since: 2003. Possibly longer.
4. The biggest adjustment I’ve had to make is: Learning to limit my activity. My mind wants to still do all those things I used to be able to do. I look at something and think, “it’s not that much.” But all those little things add up throughout the day. And it is no fun to not be busy doing things.
5. Most people assume: That I am just lazy. That I am just fat. That I just sit around doing nothing and that is why I got fat and that is why I am “tired.”
6. The hardest part about mornings are: Getting the willpower up to make my body move. Sometimes it is hard to even just push the covers off and sit up. Oh the days that my hands don’t work suck so bad. the stiffness, the limited movement until they get worked out. And some days I just lack the strength to stand up.
7. My favorite medical TV show is: Royal Pains
8. A gadget I couldn’t live without is: He isn’t a gadget per se, but he is durable medical equipment. I couldn’t live without my service dog.
9. The hardest part about nights are: Getting to sleep. For whatever reason I have huge problems sleeping on a regular schedule. My whatchamacallit rhythm thingy is off kilter. Melatonin is a God send.
10. Each day I take: 14 – 15 pills and use one to two inhalers.
11. Regarding alternative treatments I: Think that there are beneficial ones and bogus ones that at best have the placebo effect and at worst can be dangerous. The choice to use any treatment should be weighed carefully.
12. If I had to choose between an invisible illness or visible I would choose: I would like any kind of chronic illness, visible or invisible, that doesn’t bring my life to this infuriating halt. I mean just thinking exhausts me and can land me laid up with PEM.
13. Regarding working and career: I miss being able to work like I used to without it having such awful consequences.
14. People would be surprised to know: How much pain I have and how hard it is to do the little I do.
15. The hardest thing to accept about my new reality has been: Accepting that this is my life now.
16. Something I never thought I could do with my illness that I did was: My big problem is there isn’t anything I think I can’t do! It still isn’t fully sunk in that I can’t do things. Thus there isn’t anything I thought I couldn’t do and then did do. It is always the other way around. 
17. The commercials about my illness: There are none.
18. Something I really miss doing since I was diagnosed is: Being active.
19. It was really hard to have to give up: My independence.
20. A new hobby I have taken up since my diagnosis is: I haven’t. I have had to give up nearly every hobby I had and struggle to choose just a couple to focus what little energy I have on.
21. If I could have one day of feeling normal again I would: Turn it down. I’m miserable enough being able to remember life before I was disabled. To have that back for one day just to have it ripped away again, that’s just plain torture.
22. My illness has taught me: That most all people really just don’t understand. Also that people are not keen on keeping friends that can’t get out and do stuff and be fun.
23. Want to know a secret? One thing people say that gets under my skin is: “I’m tired too.” Just freaking GRRRRRRRRRRRRRRRR! If your tired were a mouse, my fatigue is a whale okay? They don’t compare. They aren’t the same. They aren’t in the same zip code. If you are tired, GO FREAKING GET SOME SLEEP. I wish that’s all it took for me!
24. But I love it when people: Accept my limitations.
25. My favorite motto, scripture, quote that gets me through tough times is: Don’t quit.
26. When someone is diagnosed I’d like to tell them: Learn to pace yourself and limit yourself as fast as you can wrap your head around it. The faster you figure out how to do that, the faster you will be able to avoid the PEM crashes as much as possible. You cannot just power your way back to your old life.
27. Something that has surprised me about living with an illness is: How many doctors suck. How many just blow off a patient as having it “all in their heads” when they have an illness that isn’t as undeniable as something like cancer. How many doctors think you are just lazy. Or trying to scam the system (when you aren’t even trying to get on disability and you work!) And I am surprised by doctors that tell you not to worry about fasting sugar that is 125 and after meal sugar that is over 200. I am surprised by doctors that actually tell you that they are worried because you are treating your own high blood sugar yourself and oh my gosh getting improvement! And they think that something is now wrong with you because controlling your blood sugar has led to you losing weight and no longer being obese! Yeah. True story that. >.<
28. The nicest thing someone did for me when I wasn’t feeling well was: Nothing. One person said she was going to come over and help me clean up the house because it is a pig sty. She didn’t. Beyond that, nobody has even offered to help me out with the things I can no longer do. Jim continues to live like I am capable of cleaning up after him and he tried to sabotage my service dog’s training and he purposely treated me bad because he didn’t want to accept that I am disabled now. My family doesn’t offer any help. My friends basically abandoned me overall. One told me I just needed to get off my ass. My step mother called me a hypochondriac. So yeah. Nothing. I might think of something later. There’s been a lot of years and a lot of not feeling well.
29. I’m involved with Invisible Illness Week because: I’m not! I just felt like answering the questions!
30. The fact that you read this list makes me feel: Surprised.
