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invisible illness week Sept 14-20 - when you don't know what to do...
do the next thing
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: , ,
i feel: okay okay

10 trips or shoot the rapids
hascouf From: hascouf Date: September 17th, 2009 10:18 pm (UTC) (base camp)
So true, so very true.

We need to get together and talk about camping with the CPAP if I am actually going to get to any events next year.

tashabear From: tashabear Date: September 18th, 2009 02:36 am (UTC) (base camp)
We need to get together, period. ;-)
esmerel From: esmerel Date: September 17th, 2009 10:37 pm (UTC) (base camp)
CPAPs are amazing, no doubt. They've improved my, and my husband's sleep hugely. He pretty much doesn't snore anymore, and he's got more energy. He doens't wake up 6 days out of 7 feeling groggy and irritable and tired (it's more like 1 or 2 days a week now, depending on how the little one has done). For me, YAY NO SNORING. We spent a lot of money on our bed. I like sleeping in it. I'm so glad he finally got officially diagnosed.
sgt_majorette From: sgt_majorette Date: September 17th, 2009 10:46 pm (UTC) (base camp)

As regards #29:

I was diagnosed with narcolepsy, which involves sleep apnea, depression, ADD, minimal brainwave dysfunction and all kinds of other stuff. I've had these problems all my life, but it was a personality disorder until researchers figured out what parts of the brain weren't working right. What they haven't yet figured out is which of these symptoms is the chicken and which is the egg and how they interrelate.

Never thought much about it until I got older and the symptoms got worse: sudden and complete loss of muscle control with no loss of any sense that does not involve muscles. It looks and feels like a stroke, and I was glad to find out it wasn't.

It may be hereditary. My mother is kind of a gloomy, neurotic individual whom I very much resemble psychologically, and she's on a CPAP.
helwen From: helwen Date: September 18th, 2009 12:59 am (UTC) (base camp)
The addiction thing is just weird....

I think the hobby question has to do with how people handle whatever their illness may be. Some folks may have to give up some other activities, and picking up something else is kind of a moving forward thing. I have so many things I do, that I really don't need to go replacing things I give up :D

It makes a lot of sense that sleep apnea could factor into weight gain, since bad sleep means the body isn't producing all sorts of things it needs to produce and it doesn't get rid of waste chemicals as well either. Fitzw has wondered about it in my case, although since my snoring has gotten better (less often) since starting kung fu, I think I'll wait on a sleep study for a while longer. One of my b-i-l's and a number of my other friends use CPAPs though, and I'm so glad there's something available to help them!
albreda From: albreda Date: September 18th, 2009 01:26 am (UTC) (base camp)
Thanks for the look inside what that's like. I'm glad you got the help you needed!
timestep From: timestep Date: September 19th, 2009 01:22 pm (UTC) (base camp)
*waves hi* I added you to my f-list. I am also watching the knitting group you post on. Until I read the comments this morning, I never knew that knitting even meant without increasing or decreasing.

I'm so glad you are sleeping with air now.

LOL about tap water smelling lot a swamp. Thank goodness for distilled water then.
3fgburner From: 3fgburner Date: November 16th, 2009 08:22 pm (UTC) (base camp)

I have it, too, according to a sleep study I did.

Flip side, the damn wires and machines kept me on my back the whole damn night. At home, wife elbows me when I start to snore, whereupon I roll onto my side. I went in for CPAP calibration, and the damn thing was so annoying, I decided it wasn't worth getting it. Spent the entire night dreaming, over and over, of getting up, getting the wires off, and driving home in the dawn.
tashabear From: tashabear Date: November 16th, 2009 08:36 pm (UTC) (base camp)

Re: I have it, too, according to a sleep study I did.

You really need to work with the techs to find a mask that works for you. Treating sleep apnea is not just about alleviating snoring. It's about keeping your O2 saturation in a healthy range so you don't have some serious adverse effects of hypoxia. You're putting yourself at risk for hypertension, stroke, diabetes, mood disorders, and cardiovascular disease. Not treating sleep apnea increases your risk of heart attack or premature death by 30%.

There are so many mask and machine options available these days. Please, don't put yourself at risk like this when you have the chance to get treatment.
3fgburner From: 3fgburner Date: November 16th, 2009 08:39 pm (UTC) (base camp)

Re: I have it, too, according to a sleep study I did.

Given that I usually sleep like a rock, and wake refreshed, I suspect that some of the issue may have been the wires in the first place. Coupled with a possible diagnosis of "Damn, this guy has good insurance!".
10 trips or shoot the rapids