tasha (tashabear) wrote,

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invisible illness week Sept 14-20

I didn't understand what this was about till I read helwen's entry, and then I had to think about whether or not I'd be doing any good by answering it. Then I thought, what the hell... and I'll leave it unlocked, in case the three of you reading this that don't know this about me want to go behind the cut to read it.

1. The illness I live with is: Obstructive Sleep Apnea -- my airway closes while I sleep. I actually suffer from hypopneas, which is partial occlusion of the airway, but it's still enough that my O2 levels dropped to 81% during my sleep study, and it took me three hours to achieve REM sleep. My levels should be above 90%, and I should have had one or two REM stages in that first four hour period.

2. I was diagnosed with it in the year: I had my sleep study on April 12, 2008, got my diagnosis on April 29th, and got my CPAP on May 13th. It was a real turning point for me.

3. But I had symptoms since: I'd been snoring and waking up with headaches for almost ten years.

4. The biggest adjustment I’ve had to make is: Sleeping with a CPAP machine, which is an air pump that forces air into my airway and keeps it open. I sleep with a relatively low pressure, and don't notice it after a minute or so, but the mask itself is sometimes hard to get adjusted properly. If my skin is too dry or too oily, it'll slip and leak. If my pillow is in the wrong position, it'll slip and leak. If my hair is loose as opposed to braided or in a pony tail, the headgear fits differently, and the mask may slip and leak. If the hose isn't in the right position, the mask will slip and leak. I've figured out all the little things that can affect the fit and comfort of my mask, but sometimes I have to go quite a ways down the checklist before I strike on what the problem is this time.

5. Most people assume: that I have sleep apnea because I'm fat. I wasn't this heavy when the symptoms began, and researchers are now seeing a link between sleep apnea and weight gain.

They also assume that I can become addicted to my machine, and dependent on it. Well, I am dependent on it, because I like breathing while I sleep. I can't do it properly on my own, so I need the machine. Addicted? Not really. I can sleep without it, but it is actually painful in the long run.

6. The hardest part about mornings are: I'm just glad they don't hurt any more.

7. My favorite medical TV show is: I used to like House, but it got boring.

8. A gadget I couldn’t live without is: my iPod touch, but I don't think that's what is meant here. My CPAP machine is an absolute necessity, to the point where I must be allowed to take it on aircraft as an extra carry-on. TSA can bite me on that count.

9. The hardest part about nights are: Getting the damn mask situated so I don't get leaks, which are almost always situated so the air blows into my eyes. Pleh.

10. Each day I take _ pills & vitamins: I don't. I should take some supplements that have nothing to do with my apnea, but I don't. I ought to get back to that...

11. Regarding alternative treatments I: Could care less. The only alternative to my machine, other than bite guards that reposition the jaw (no thank you) is painful surgery that may or may not work. I'm not going through all that on the off chance that I might still need CPAP therapy further down the road.

12. If I had to choose between an invisible illness or visible I would choose: Neither, thanks. I'd rather be healthy. But the inconveniences of sleeping with a CPAP outweigh the stigma of suffering a visible illness, so all things considered I'd rather have the CPAP.

13. Regarding working and career: Being on CPAP therapy improves my ability to function, so if I had a career, I'd probably be doing better at it.

14. People would be surprised to know: More of you have sleep apnea than you know, and are probably undiagnosed. Also, I think that the sleep apnea has affected my memory. I don't feel as though I'm as smart as I used to be. Or maybe I'm just really bored.

15. The hardest thing to accept about my new reality has been: I can't just stay over at my mom's on a whim. I have to know whether there is power where I'm going, and if there is power, is there a way to get distilled water for my humidifier, or do I need to bring it? I need to remember to charge my battery every day at an SCA event, which can mean taking a bit of a hike, and that I can't just laze around camp all day.

16. Something I never thought I could do with my illness that I did was: sleep through the night.

17. The commercials about my illness: There aren't any.

18. Something I really miss doing since I was diagnosed is: sleeping without my mask on.

19. It was really hard to have to give up: sleeping without my mask on. The longest I can nap without it is 30 minutes.

20. A new hobby I have taken up since my diagnosis is: um... is this relevant? Nalbinding, I guess.

21. If I could have one day of feeling normal again I would: I don't feel abnormal.

22. My illness has taught me: Appreciate the air that you breathe.

23. Want to know a secret? One thing people say that gets under my skin is: There's not a lot they can say about my being diagnosed and treated for sleep apnea, other than "thank god you're not snoring anymore!"

24. But I love it when people: listen to me yak on about it.

25. My favorite motto, scripture, quote that gets me through tough times is: Sod this for a game of soldiers.

26. When someone is diagnosed I’d like to tell them: Keep trying to find the right mask. It's out there, and once you get a good fit, your whole world will change.

27. Something that has surprised me about living with an illness is: It's doable. It's not all drama all the time. And tap water really sucks for a CPAP humidifier -- it tends to smell like swamp.

28. The nicest thing someone did for me when I wasn’t feeling well was: My beloved rubs my back so I can go to sleep. He's awesome.

29. I’m involved with Invisible Illness Week because: Sleep apnea can contribute to obesity, heart disease, hypertension, stroke, diabetes, mood disorders, and can be a cause of death. Life is pretty good; I think I'd like to keep living it.

30. The fact that you read this list makes me feel: Happy and hopeful.
Tags: cpap, invisible illness, sleep apnea
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