30 things you may not know about my invisible illness

This week is invisible illness awareness week. In honor of that, here is  30 Things About My Invisible Illness You May Not Know. You can read more of them at invisibleillnessweek.com.

1. The illness I live with is: Lyme Disease and Fibromyalgia

2. I was diagnosed with it in the year: 2011

3. But I had symptoms since: April 2010

4. The biggest adjustment I’ve had to make is: Adjusting to my limitations. I can no longer do many of the activities that I used to, and it has been frustrating to give those things up.  I want to be busy, I want to be active, but my body won’t let me. I’ve had to accept that I can no longer play sports, I can no longer have a career, I can’t be the kind of Mom to my kids I wanted to be. So I had to completely revamp my life and how I live it.

5. Most people assume: That I am either just fine or completely helpless. The truth lies somewhere in the middle. There are lots of things I can do just like a healthy person, but they usually involve more planning. I have to make sure to not over schedule myself, otherwise I will physically fall apart. On the surface I live a normal life, but very few people are able to see all the things going on behind the scene that lead to that illusion.

6. The hardest part about mornings are: Waking up in pain. My pain level is at its highest in the mornings, which makes getting out of bed a challenge. Once I get up and get going it’s easier for me to ignore how much I hurt, but it takes a while. Sometimes it looks like I’m just lazy because I can’t get up early, but taking it easy in the morning is the only way I can set myself up for a productive day.

7. My favorite medical TV show is: I hate them all. Medical TV shows usually feature doctors who actually care about their patients. I have not met one doctor who feels that way, not one. Medical TV shows also usually end with a solution to someones illness.  The truth is there are many chronic illnesses that have no solution. On TV you don’t see the suffering that goes on and on and on.

8. A gadget I couldn’t live without is: I’m not really a gadget person, but I guess I would say my kindle. I read a lot of books while lying in bed with my heating pad.

9. The hardest part about nights are: Trying to get to sleep. Painsomnia makes it very difficult, even when I take enough sleep medication to put down a horse.

10. Each day I take __ pills & vitamins. (No comments, please): Not as many as I have in the past, generally only 3 or 4.

11. Regarding alternative treatments I: Think most of them are complete bunk. People like to prey on the sick by taking advantage of their desperation. Of course, this isn’t just alternative medicine, it’s regular medicine as well.  However, there are some actual proven  alternative treatments that I am fine with.

12. If I had to choose between an invisible illness or visible I would choose: Invisible. I like that my illness is not on display because there are times when I can pretend to be healthy. Having an invisible illness does mean you get less help and sympathy than if your disability is obvious, but I’ve never liked being the center of attention.

13. Regarding working and career: Haha, I wish. Every time I get my health to a point where I think I could go back to work, my health tanks and it turns out to all be a pipe dream.

14. People would be surprised to know: How much it hurts when people treat me like crap because of my illness. I can put on a good front, but it really wears me down.

15. The hardest thing to accept about my new reality has been: Lowering my expectations for myself. I am my own biggest critic, and I have a hard time giving myself a break. I want to do so many things, and I get mad at myself when I fail to do them.

16. Something I never thought I could do with my illness that I did was: Live a joyful life. Things may not be how I imagined they would be, but I have a good life.

17. The commercials about my illness: Fibromyalgia commercials are a complete joke. They show someone taking a pill and then  *poof* their life goes back to normal. The truth is that Fibro medication has horrible side effects. Massive weight gain, excessive sweating, a chemical dependence on the drug that keeps you from quitting taking it. It’s not a pretty picture.

Lyme Disease doesn’t get commercials. Because after all, because it’s “hard to get and easy to cure.” CDC bullshit.

18. Something I really miss doing since I was diagnosed is: Anything athletic. Athletics used to be my outlet for my emotions. Any time I was stressed, angry, sad, or depressed I would go rock climbing, or do some kickboxing, or go lift weights. I can’t do any of those things any more. I can do yoga and walking, but those aren’t as effective.

19. It was really hard to have to give up: My social life. I like being surrounded by people and chronic illness can be very lonely and isolating. I still do things with friends, but on a much more limited basis.

20. A new hobby I have taken up since my diagnosis is: Blogging. I don’t profess to be a writer, but it helps to get my frustrations out through words since I can’t physically work off my anger anymore.

21. If I could have one day of feeling normal again I would: Go hiking with my family. I love hiking and exploring new places.

22. My illness has taught me: Compassion. Very few people live a perfect life, and sometimes the people who seem the most put together are actually suffering the most.

23. Want to know a secret? One thing people say that gets under my skin is: You still aren’t feeling better? Why no, I’m never going to feel better, thanks for rubbing it in.

24. But I love it when people: Let me know that they care and that I am not forgotten, even though I am different from everyone else.

25. My favorite motto, scripture, quote that gets me through tough times is: I can do hard things!

26. When someone is diagnosed I’d like to tell them: It gets better. It’s not easy, but your life isn’t over. You will find ways to adjust and it will be okay.

27. Something that has surprised me about living with an illness is: How many other people there are out there struggling with illness.

28. The nicest thing someone did for me when I wasn’t feeling well was: There are so many things people have done for me, I can’t even count. Just last week I actually had the flu, and being sick on top of being “sick” took it’s toll. A friend asked what I needed, and I told her all I needed was some Sprite because I was too sick to drink water. She brought it to me, and it made a huge difference even though it was just a little thing.

29. I’m involved with Invisible Illness Week because: I want to raise awareness about invisible illness. So many of us get judged because we look just fine. So many people get harassed for parking in handicap spaces because they don’t sick enough. So many people don’t believe me when I tell them my limitations because I look great. I want people to understand that most illnesses are invisible.

30. The fact that you read this list makes me feel: Grateful, this is a long list! Thanks for hanging in there.

Facebook Comments
(Visited 114 times, 8 visits today)

2 thoughts on “30 things you may not know about my invisible illness

  1. It is surprising for me to personally know quite a few people who have Lymes. I never paid attention to statistics from the CDC until I read one of your posts, then I went and checked it out myself. I do believe Lymes is much more prevalent than what the CDC claims, and I also believe that it can be much more serious than what they lead to the general public to believe. I have a friend who has been struggling with Lymes for, what seems like, years- and it doesn't seem to be getting better.

    Thanks for another great post. Hope you have a wonderful, low pain kinda day.

  2. Thanks for sharing your story! I also have Fibromyalgia, among other things. I like your answer to number 26, what to say to someone newly diagnosed, "Your life isn't over. You will find ways to adjust and it will be ok." So many people need to hear that! The newly diagnosed, and those just having a bad day!

Leave a Reply

Your email address will not be published. Required fields are marked *