14 September 2010

30 things about my Invisible illness that you may not know...

This week is Invisible illness awareness week.  There are all kinds of invisible illnesses out there,  and they touch our lives in many interconnected ways.  My husband has Diabetes, I have endometriosis, we are infertile.  All of these things are invisible. When we walk down the street you can't look at us and say - oh yeah, they've got a problem.  You can't see if we're hurting, or tell if it's been a particularly rough day.  Looking from the outside, it's impossible to see all of the changes and adjustments made in a life to work around an illness.  But all of these adjustments, disappointments, and victories are still there, and they're just as hard won as visible scars.  SO I guess, I'm showing you all my invisible scars, just a little bit.  

I'm posing this meme twice, because for us anyway, my endometriosis and our infertility are two separate things.  They hurt in different ways, and have changed my life in different ways.  I'm starting with Endometriosis - because well, I've lived with it a lot longer.

My husband just held me, and stroked my head, and let me feel crappy.  He didn't try and fix it - just did his best to hold me and help me through. of Awareness, and hoping that I can help, just a little bit, to raise awareness of things that you can't see.

Question Endometriosis Answer Infertility Answer
 1. The illness I live with is:  Endometriosis Infertilty
 2. I was diagnosed with it in the year: 1999 2010
 3. But I had symptoms since:  Puberty for the most part - I thought it was normal until I was in pain every day.  I had several ruptured ovarian cysts in 1997, and I guess that was the big start of what I might call symptoms. Symptoms?We started trying to get pregnant in June of 2009 - and well, it didn't work.  Turns out it had very little chance of working.
 4. The biggest adjustment I’ve had to make is:   Sounds silly, but carrying narcotic pain pills pretty much all the time.  the last couple of years have been good to me - so my bad days are fewer and farther between, but they can be really really bad.  I spent a night in the ER last month, because I need morphine to make the pain go away. (that and we had to make sure that it wasn't appendicitis - again!) Learning how to wait, let go, and not *DO* something.  I'm still learning, and it's still hard.
 5. Most people assume:  I'm not sure what, if anything people assume.  I think for the most part, people just don't really know about or understand it anyway. That it's not as big of a deal as it is.  It';s been one of the biggest stressors of my marriage, and there's no easy solution or answer.
 6. The hardest part about mornings are:  Trying to figure out if I can make it to work without taking a pain pill on bad days.  It's a bit of a guessing game, and if I get it wrong, my day starts of really really bad, and it's hard to get ahead of it. I still take my temperature - and the hardest thing is when it's going up and up - it makes me hope, even when there's no real reason to.
 7. My favorite medical TV show is:  Grey's Anatomy, but House is a close second.  I guess it's all the interpersonal stuff in Grey's that really keeps me coming back.
 8. A gadget I couldn’t live without is:  My barley pillow.  It's a take anywhere heating pad, all you need is access to the microwave.  I can heat it up in the morning before I get into the car, and then use it the whole drive in. The internet, and this blog.  Without this outlet and the ability to talk about everything here, I think that I might have fallen apart.  everyone out here makes each day just a little bit easier to bear, and that's a great big help.
 9. The hardest part about nights are: Falling asleep.  The medicine can make me tired, but it also keeps me awake.  it's a major catch-22.  Can't sleep without it, can't sleep with it. The dreams.  Sometimes they're so real, that it's wrenching to wake up to reality.  
 10. Each day I take 9-25 pills & vitamins. (No comments, please):  On good days, I just take my basics, on bad days it's usually 5-6 pain pills every 6 hours, plus the ones I take already. I started on Metformin because we thought it might help.  I'm still taking it, but it's hard to say why sometimes.  
 11. Regarding alternative treatments I:  Stopped really believing that they work a long time ago.  I decided that I needed to stop looking for a miracle cure, and instead learn how to live with what I've got.  It's been working, for the most part. Since I struck out so bad with alternative treatments with the endo, I didn't venture too far down this path - although Jakobe might have something else to say about it - I make him take a lot more vitimins that he ever did before.  Just Hoping that they might make a difference.
 12. If I had to choose between an invisible illness or visible I would choose: Probably invisible, I've got experience at it, and I can pretend to others that it doesn't exist.  I don't have to think about it on a good day.
 13. Regarding working and career: I've had to call in sick because I hurt too much to get out of bed more days that I care to count.  Also - I end up driving to and from work while on pain meds, because I just can't be gone that much.  It's a fact of life. One of the things that irritates me is that my employer chose to have absolutely no infertility coverage in any of the 10 different insurance plans we're offered.  I wish that could have asked for that coverage in one plan - it would have been more expensive, but there would at least have been an option.
 14. People would be surprised to know: That I always worry that I'm being a wimp, and that I'm making a bigger deal out of my pain than it really is. That I've thought hard about just not trying to have a family, and pictured what our life would be like.  It's not bad - and we travel, and buy nice houses, and have great vacations.  I guess it's Plan C, or maybe D.
 15. The hardest thing to accept about my new reality has been: Accepting that it won't ever go away.  Most of the time I refuse to let it mess with my life or my plans anymore That I can't fix it.
 16. Something I never thought I could do with my illness that I did was: Go off of birth control.  When I finally found one that really worked to suppress the endo, it was like the world was a completely different color.  I dreaded stopping it, and didn't want life to go back to how it was before.  Right now, I'm hormone free, and I guess I've learned to live with it much better than I did before, because it hasn't been as terrible as I feared. I don't know yet - Right now, I'm not sure that we'll ever be able to have children, and That's something I want to be able to put behind us.
 17. The commercials about my illness: Don't exist. Well, they aren't about infertility per-se b ut that while Pregnancy test commercial thing - so very directed at women who are trying (and not being immediately successful) to get pregnant.  No one else really has all that much interest in which test can tell you one day sooner than the others...  and infertiles often buy lots and lots of pregnancy tests...
 18. Something I really miss doing since I was diagnosed is: I guess I have this one easier than other people, because I don't really think of anything I've actually given up anymore.  I miss having a completely pain-free day, but then again - I hardly notice on most days.  Spending money on frivolous things - every time I spend money now, I think about how it sets back our family building goals.
 19. It was really hard to have to give up: Right after I was diagnosed, I gave up going to school, it was too much for me to handle, and I couldn't figure out how to function well yet.  I've since gone back - but that was a very hard choice to make. The picture in my head of what our life was going to be like.  Right now I have a fuzzy indistinct tapestry of hope and fear, and there's no clear picture.
 20. A new hobby I have taken up since my diagnosis is: The SCA (Society fro Creative Anachronism)  Playing there involves a lot of different hobbies, wrapped up into one. It's great! No new hobbies - my time was pretty full before, and I'll admit to being a little bit obsessed.   Its' still pretty new, comparatively.
 21. If I could have one day of feeling normal again I would: Honestly? Revel in it.  Have lots of great sex and not worry about if I'll end up hurting later! Be happy, and remind myself about who I am without all these desires hanging over my head.
 22. My illness has taught me: That I can deal with a lot more than I ever thought I could. That I love my husband more than I ever thought possible.
 23. Want to know a secret? One thing people say that gets under my skin is: I don't have anything here.  I don't tell a lot of people, and If I do, they don't have much to say. "You can always adopt."
 24. But I love it when people: this pretty much follows along with number 23... Give me space, and don't try to give me advice or fix things.
 25. My favorite motto, scripture, quote that gets me through tough times is: I don't have a lot of quotes to carry me through tough times, but I'm always telling myself  "It is what it is.  You can't go back, and you can't change things.  The only thing to do is move forward, and try to figure out what to do from here."
 26. When someone is diagnosed I’d like to tell them: That it sucks, but that it isn't the end of the world.  That I thought that it was a death sentence for the life I had planned - and that it would make me miserable forever.  I was wrong.  Tame passes, you adjust, and you learn that you can deal with whatever you have to.  it stops being such a big deal, and you learn to cope.  You can have whatever life you want. I'm so sorry.  There are options, but take you time and figure out what is right for both of you.  Hold on tight to each other, and don't let go, and you'll find a way though it to whatever then end of the journey is for you.

(yep - I'm still telling myself this.)
 27. Something that has surprised me about living with an illness is: That the living with part is never as hard as you think it's going to be.  It's hard, but never impossible.
 28. The nicest thing someone did for me when I wasn’t feeling well was:My husband just held me, and stroked my hair and let me feel crappy - but he was there for me.
 29. I’m involved with Invisible Illness Week because: I want to raise awareness and participating might do that - at least in a very small way.
 30. The fact that you read this list makes me feel: A little awed, and a little weird, and a little hopeful.

Go See what other people have to say about their invisible illness over here: http://invisibleillnessweek.com/2010/08/10/share-about-your-life-with-illness-with-our-30-things-meme/

and - Many thanks to Karen at Bitter-Sweet Diabetes Blog for making me aware of Invisible Illness Week.

1 comment:

  1. Thank you for sharing what you go through with your endo. We all talk about our pain from IF, but not always about underlying causes...you are incredibly strong.


Have an observation, comment, or advice? Please share, I need all the help I can get.

Related Posts Plugin for WordPress, Blogger...

Total Pageviews