Monday, September 10, 2012

In Honor of Invisible Illness Week, Sept 10-16

This week is a week of awareness, for people that have invisible illness.  To me, that means that there are people around you, EVERYWHERE, that have something going on in their lives that prevents them from living fully, engaging in the things that give them joy.  Oh, and the meds.  They take a shit-ton of pills.  For people that put up with this kind of shit-like me-some of our hope comes from knowing we are not alone.  Also, we can find connections with people around us, struggling with similar issues.  I have encountered many inspirational things over my past years dealing with my health problems, and I hope this helps people to understand what it's like, to be ME.

***If you know someone that is struggling with an invisible illness, send this blog to them.  Or find a resource for them in the are.  Or call them from the store and ask what they need.   Or, all 3!

1. The illness I live with is:
Chronic Lyme Disease, Fibromyalgia, Chronic Fatigue, Reynaud's Phenomenon, Major Depression
2. I was diagnosed with it in the year:
FM in mid-2011, everything else sporadically til Jan 2012, when I got the Chronic Lyme Disease dx. Apparently, everything wrong with me is supposed to go away when the Lyme Disease subsides. 
3. But I had symptoms since:
Wow.  Seriously?  My Lyme doc and I traced it back to when I was 13ish (1985?).  I have struggled with various things potentially because of Lyme off and on since then, including debilitating Sciatica since I was 23.
4. The biggest adjustment I’ve had to make is:
Another wow.  Letting go to what I thought my life was?  The things I valued?  Being the person I thought I was? 
5. Most people assume: 
I don't know.  Maybe they assume that I will be well soon?  That I have some bug that will be cleared up? they must think I am a slow learner, by now. 
The hardest part about mornings are:
Walking, getting some range of motion into my lower limbs, and checking energy to see if my anticipated plans for the day are still possible.
7. My favorite medical TV show is:
I used to dream of meeting a real Dr. House, but I'm not much of a "drama show" person, because medical shows and the news just stress me out!
8. A gadget I couldn't live without is:
  My smartphone.  I have to be connected to the people I met through my illness---email, Facebook, blogging.  Plus, I can work from anywhere, when my brain works well enough for work.
9. The hardest part about nights are:
Hoping I can sleep.  Sleep has been very difficult, and I don't want to go back on sleeping pills ever again.
10. Each day I take __ pills & vitamins.
32.  4 times per day, spread out.  Plus some homeopathic tinctures.
11. Regarding alternative treatments I:
I am open to anything that will help me take back my body.  I used to hate pharmaceuticals, and I don't think now that I would be as far as I am without them.  But, I work heavily with my acupuncturist to coordinate with my other docs.
12. If I had to choose between an invisible illness or visible I would choose:
Invisible.  When I am having a good day, I sometimes forget things have been really bad for me.
13. Regarding working and career:
I have had to grow a lot, letting go of the thought that people couldn't function without me, that they could carry on with the way I wanted things.  I actually have grown quite a bit, professionally through this, and would not change learning to trust others at work.
14. People would be surprised to know:
How many problems I have with my brain.  When I mention forgetting words or names, they usually say something like, "Oh, you're just getting old", but really?  Neurologically, those are the symptoms that scare me the most, and told me the Lyme Disease was in my brain tissue.  I'm only 39, I should not have the neuro symptoms I have.
15. The hardest thing to accept about my new reality has been:
Watching my children and husband see me struggle.  I don't want my children to grow up thinking women (or ME!) are weak, can't take care of themselves.  And I have often worried about other people think that maybe don't know my illnesses, that they think I'm lazy, or taking advantage of others.
16. Something I never thought I could do with my illness that I did was:
Be open with people about what is really going on, and being able to reach out to others.  I never thought I would want to be an advocate
17. The commercials about my illness:
Don't exist.  One day they will, and doctors will have more education about Chronic Lyme Disease.
18. Something I really miss doing since I was diagnosed is:
Be physically active
19. It was really hard to have to give up:
Gluten, and sugar.  In fact, I'm working on this a week before posting, and I seriously doubt I have made much progress in the "sugar" area. 
20. A new hobby I have taken up since my diagnosis is:
Blogging!  What an amazing outlet.
21. If I could have one day of feeling normal again I would:
Spend the day at Disneyland, walking forever, eating garbage, and having a great time with my family!
22. My illness has taught me:
To be more compassionate, and respectful of others. So many people struggle, and being a judgmental bitch, while hilarious, is taxing.
23. Want to know a secret? One thing people say that gets under my skin is:
"Oh, that happens to everyone, you're just getting old."  The last time 39 was old, we didn't have plumbing.  Or the wheel.
24. But I love it when people:
Try to include me in everything, even things they may think, or know, I can't do.  I like having a choice to try or not.
25. My favorite motto, scripture, quote that gets me through tough times is:
When my husband says, "I got this".  Or "It is what it is".  or a bunch of other sayings that are full of bad words.
26. When someone is diagnosed I’d like to tell them:
Take it one step at a time.  Do your research, pick what you want to start and take it easy.  But most of all, don't give up.  Reach out to people that can help you.  Find others struggling with similar things.  Take control over what you can, and remember that you can tolerate much more than you think you can.
27. Something that has surprised me about living with an illness is:
I'm happier with many of the life changes I had to make, even the ones that were the toughest.

28. The nicest thing someone did for me when I wasn’t feeling well was:
Believed me.
29. I’m involved with Invisible Illness Week because:
I have had the opportunity to reach out to others going through similar things.  I would like to think that I have helped them, given them some ideas or inspiration.
30. The fact that you read this list makes me feel:

Here are some people that have inspired me over the past year +:

The Bloggess---she struggles with depression, among other things
Christine Miserandino----the author of The Spoon Theory,a MUST-READ for people with invisible illness, and those that want to understand them.

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