30 Things About My Invisible Illness You May Not Know

30-Things

This is a survey of sorts that went around several years back, obviously before I ever made this site. It’s still going around, so I’ve updated some of my old answers in response to more recent developments, and decided to put it here. :) Feel free to fill out this survey for your own blog! (The blank form is at the link.)

  1. The illness I live with is: primarily Myalgic encephalomyelitis (M.E.) and Borrelia burgdorferi (Lyme disease), complicated by additional infections for which I have tested positive: Bartonella quintanaBartonella henselae, andMycoplasma pneumoniae. There is no cure for M.E., and because of immunodeficiencies and extremely delayed diagnosis, I have late stage neuroborreliosis. I finished treatment for bartonellosis, but the disease is prone to relapse, and by mid-2013, it did.
  2. I was diagnosed with it in the year: 2002 for M.E.; 2009 for the rest.
  3. But I had symptoms since: 2000-2002 for M.E.; 2006 for Lyme disease; and 2008 for the rest.
  4. The biggest adjustment I’ve had to make is: putting forth a conscious effort to consider how every little thing I do (or don’t do) will affect me longterm. This is the crux of being a spoonie.
  5. Most people assume: that either none of these illnesses exist at all, or that they have no potential to go chronic or cause the level of disability I experience. Oh, don’t mind me, I’m just dying from something you don’t even believe in, that makes perfect sense…!?
  6. The hardest part about mornings are: dealing with the surge of pain I feel from lack of medication overnight; making sure I don’t pass out; stabilizing my autonomic nervous system.
  7. My favorite medical TV show is: Monsters Inside Me.
  8. A gadget I couldn’t live without is: my smartphone!
  9. The hardest part about nights are: sometimes my headaches are worse by then.
  10. Each day I take ___24___ pills & vitamins.
  11. Regarding alternative treatments I: have been helped more by herbs and specific supplements than any pharmaceutical drug, as far as the M.E. is concerned; but without the drugs for Lyme disease and the infections I picked up, I doubt I’d be typing this right now.
  12. If I had to choose between an invisible illness or visible I would choose: invisible, because I’m not a fan of attention and I like the option of blending in. Using mobility aids like canes, wheelchairs, and mobility scooters has brought me to the visible spectrum, and I still prefer invisible, with that in mind. But I really don’t have to choose, I guess–I’ve been both!
  13. Regarding working and career: I think this blog is the closest I get to working. We’re all here on earth to grow our souls, and it just so happens my soul decided I could best learn through the experience of sickness. As a wise woman once said, there was never a version of this life for me where I wouldn’t have been sick. I.e., this is what I have to work with! Every day I do the best I can for my body so that my soul can continue its journey here.
  14. People would be surprised to know: just how sick I get AFTER they see/visit with me, because my worsening can be delayed by 24 hours or more; that phone conversations give me a fever; that continuous typing or texting can lead me to muscle paralysis.
  15. The hardest thing to accept about my new reality has been: that the odds are, statistically, against me.
  16. Something I never thought I could do with my illness that I did was: travel across the country during nine days of feeling miraculously better (though it still ended with me in the ER) to accomplish my bucket list dream of visiting San Francisco, watching the sun set into the Pacific ocean, and seeing the majestic Redwoods in the Avenue of the Giants. Also, helping so many people with the words I share. At the time of my first editing this post, my site had exactly 26,000 page views. Now on my third edit (2014), it has had over 72,000… How is that even possible? I’m in awe. Thank you for letting me into your life.
  17. The commercials about my illness: are non-existent, which is almost good, because most common information about them is completely false and I’d rather people have no knowledge and come to me with questions, than to have a falsely constructed preconceived idea and think they already know everything because “the television said so.”
  18. Some things I really miss doing since I was diagnosed are: driving; getting lost in a drawing; walking normally/significant distances; laughing without consequences; visiting loved ones without having to plan for it a week or more in advance; being spontaneous…
  19. It was really hard to have to give up: my independence.
  20. A new hobby I have taken up since my diagnosis is: watching concerts on DVD; reading shorter things like articles and magazines; audiobooks; public blogging; painting; zentangles.
  21. If I could have one day of feeling normal again I would: RUN. FREAKING. EVERYWHERE.
  22. My illness has taught me: patience; acceptance; mindfulness; the importance of perspective; compassion; that I am more than what I can do for others; that I am more than what I “do,” period.
  23. Want to know a secret? One thing people say that gets under my skin is: when people attempt to relate by comparing situations that in absolutely no way are similar to living with severe illness. You don’t see me claiming to know “just what it’s like” to lose a child, do you?
  24. But I love it when people: know how to fight for what they want; I respect that.
  25. My favorite motto, scripture, quote that gets me through tough times is:
    “It is the greatest mistake of all to do nothing because you can do only little; do what you can.” (Sydney Smith)
    “When nature moves swiftly, it destroys.” (David Bate)
    “Smile, breathe, and go slowly.” (Thich Nhat Hanh)
    But He said to me, ‘My grace is sufficient for you, for My power is made perfect in weakness.” (2 Cor 12:9)
    I can deal with anything as long as I remember that whatever I need on any given day, it will be available to me. I believe the Universe looks out for us, and that there will always be enough, until there isn’t. Like Thich Nhat Hanh says, when conditions are sufficient, things manifest; when conditions are not sufficient, these manifestations withdraw.
  26. When someone is diagnosed I’d like to tell them: that their life isn’t over. And to properly educate themselves about the illness. As far as M.E.: Do not listen to anyone that says you “just need more exercise” because that one mistake can change the course of the entire disease. As for Lyme: If someone even mentions the phrase “post lyme syndrome,” claims you can’t have it because the test was negative/you didn’t have the rash, or claims that your symptoms must be something else just because you’ve already had the standard one month of antibiotics, get as far away from them as possible, order an IGeneX kit, and find an educated Lyme-literate physician.
  27. Something that has surprised me about living with an illness is: (1) how many people there are who want to blame YOU for being sick, because the thought of anything happening outside of their control terrifies them; (2) how many people abandon you when you get worse, for much the same reason; but also (3) how much some people are truly willing to help, and (4) how your closest friends will find a way to keep in touch with you.
  28. The nicest thing someone did for me when I wasn’t feeling well was: not blame me for the disease worsening; cook dinner for me; bring me back food from a restaurant: clean my house; spend hours drawing things for me; mail me CDs and letters and tea without any expectations that I’d reply (because often I can’t); insert many more things here, because I’ve been truly, truly blessed with support.
  29. I’m involved with Invisible Illness Week because: I think filling out this survey will help others feel less alone.
  30. The fact that you read this list makes me feel: like someone cares.

Find out more about Invisible Illness Awareness Week at their website. In particular, you can sign up for their updates to receive a free chronic illness e-book on “263 ways to do more than ‘just get by'”! I’ve browsed through it and it has a little bit of something for everyone.

a rainbow at night

last updated 2014, December 19th
Advertisements

3 thoughts on “30 Things About My Invisible Illness You May Not Know

What are you thinking?

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s