Invisible Illness Week: Thirty Things You May Not Know About My Illness(es)

30 things you may not know about my invisible illness mod

This week, my fellow sick bloggers and I were asked to answer 30 questions.  And by sick, I don’t mean “Dude, your blog is sick, yo.”   The questions are for “Invisible Illness Week.”

Hopefully the answers will help spread awareness of problems caused by chronic illnesses that are unheard of.  And unseen.  An invisible illness is one that may wreak havoc on the patient but to the rest of the world will elicit a response of “but you don’t look sick!”

1. The illness I live with is: I have two – Chronic lyme and lupus.  I won’t give them the power of using capital Ls in their names.

2. I was diagnosed with it in the year: “Lucky” ’07.

3. But I had symptoms since: Possibly since I was in middle school. My doctor thinks when I couldn’t straighten my knee for months in 6th grade (and was diagnosed with juvenile rheumatoid arthritis after they couldn’t figure out why) that it could actually have been when I contracted lyme.  I teeter between believing that theory and thinking that it’s crazy.

4. The biggest adjustment I’ve had to make is:  I’ve had to accept that I may need to cancel plans at the last minute.  My symptoms are more unpredictable than the weather and they can come and go like a storm system.  I always have to be prepared to take cover (under my covers) when hurricane lyme throws me for a loop (or lup?).   I hate inconveniencing others so backing out on something at the last minute makes me cringe.

5. Most people assume: I’m fine.  Because that’s what I tell them when they ask.

6. The hardest part about mornings are: Feeling hungover.  At least with a real hangover, you get to enjoy yourself the night before.

7. My favorite medical TV show is: Scrubs.  I watch TV to zone out and forget about my medical problems, so I don’t want serious medical shows that remind me of them.

8. A gadget I couldn’t live without is: My computer.  I can plop it on my lap and stay connected via social media even when I’m in bed all day.

9. The hardest part about nights: Both lyme and lupus are the ones that “party” at night.  Staying asleep is always a challenge.  It’s a big complaint of many patients, but I don’t know the cause. Terrible night sweats is one symptom that interrupts a good night sleep for me but even when that goes away temporarily, deep sleep is difficult. I can’t remember the last time I slept for 8 hours straight.   As I’m typing this, it is 2am.

10. Each day I take __ pills & vitamins: This varies.  It has probably been as high as 30-40 because the dose of many supplements is more than one at a time and more than once a day.  But then I get tired of taking them, rebel and take none.  Right now I’m taking none and I can tell it’s taking a toll.

11. Regarding alternative treatments I: Used to be the biggest skeptic.  I still fight with my skepticism when my doctor mentions some new and wacky sounding treatment, but I’ve learned that the alternative treatments are necessary and beneficial. And expensive.

12. If I had to choose between an invisible illness or visible I would choose: Invisible.  I like being able to seem “fine” when I’m out in public.  I don’t want to be known as the pitiful sick lady.

13. Regarding working and career: There’s no way I would have the energy or cognitive function for a full time job.

14. People would be surprised to know: How much time I have to spend in bed.  When I’m out, I look fine – and for the most part, I AM fine at that moment.  I’ve learned what I need to do to “plan” for outings – how much rest is required before so I can make it through without showing any symptoms.  Unfortunately that means many hours of resting before and after, plus staying home a LOT when I’m not up for putting on a façade.  Some people comment on how busy I am, but would be shocked to find out how little I am actually able to do on a daily basis.

15. The hardest thing to accept about my new reality has been: The type of Mom it has turned me into. I always wanted to be June Cleaver, not Peggy Bundy.

16. Something I never thought I could do with my illness that I did was: Hmmmm.  That’s a tricky one.  It’s easier to list what it prevents me from doing, not what it’s enabled me to do.  But I guess it has allowed me to be able to say I’m one tough cookie.  Multiple doctors have commented on my high tolerance for pain.

17. The commercials about my illness:  I don’t think there are any.

18. Something I really miss doing since I was diagnosed is: Being spontaneous. I feel like I have to plan out every minute task or activity based on how much energy it will require.

19. It was really hard to have to give up:  Now here’s the easy question. I had to give up wanting to be the “do-it-all” Mom.  Deep down I’m the annoying Mom who wants to pack heart shaped sandwiches on Valentine’s day and  make personalized hand-stamped Christmas cards and thinks I have to bring made-from-scratch desserts to pot lucks.  I love being room Mom, team Mom, PTA Mom…Super Mom.  But really what I am is just Super Tired.  I forget to even pack lunches many days and I haven’t sent Christmas cards in 5 years. But I DO still bake from scratch on occasion and can’t help but say yes when a coach or teacher is asking for help…knowing my body will make me pay the price later. I’m my own worst enemy.

20. A new hobby I have taken up since my diagnosis is: Blogging!

21. If I could have one day of feeling normal again I would:  just do all the normal things that most people take for granted.  Take a long shower without the heat wiping me out.  Go grocery shopping AND unload the groceries without needing a nap in between.  Make dinner without a foggy brain causing me to forget ingredients or burn it.  Oh, and I’d also run and run and run some more.  I can remember the exhilarating feeling of running full speed.   Now some days just walking is a chore.

22. My illness has taught me: To prioritize what’s most important in my life.  I’m still not good at saying yes to the right priorities.  Too many days I spend all my energy on the wrong ones because I am terrible at saying NO (as shown in #19). But I do try not to sweat the small stuff as much.

23. One thing people say that gets under my skin is: That chronic lyme doesn’t exist.  I don’t understand how thousands of people can report the same ongoing symptoms, yet part of the medical community treats us like we are insane.  One big reason I hesitate to talk about my problems with lyme is that I know there are people out there that don’t believe it is a real thing.  And on top of that there are people in the lyme community that don’t believe I have lupus.  They attribute all the problems to lyme (you’d think after being doubted themselves, they wouldn’t doubt others).  While many of the symptoms of lyme and lupus are very similar, I have a few that are specific to lupus.

24. But I love it when people: Force me to occasionally accept help.  I will say I don’t need it when asked, will almost never ask for it and generally hate being the helpee instead of the helper… but every once in a while it seems to come when it is needed most.   During a particularly fatigued week, a friend texted me “I’m dropping off dinner on your porch in 20 minutes.  No argument!” I hadn’t told her I was having a rough week, but it was like she had some way of knowing that my fridge was empty and the menu choices that week had consisted of “who delivers.”

25. My favorite motto, scripture, quote that gets me through tough times is: “God won’t give you more than you can handle.”  God thinks I’m a badass.

26. When someone is diagnosed I’d like to tell them: Well, I will first answer with what I DONT like to tell them.  I don’t like to tell them too many details about my journey because they don’t need to hear a worst case scenario.  I do tell them to talk to their doctor about every single weird symptom they may be having.  Nothing is too small to mention because it may help connect the dots for a complete diagnosis and determine the best treatment.

27. Something that has surprised me about living with an illness is: How it has turned me into an academy award worthy actress.  I amaze myself at how well I can hide how miserable I’m feeling sometimes.

28. The nicest thing someone did for me when I wasn’t feeling well was: When I was first diagnosed, I got a PICC line for IV antibiotics put in my arm.  I got a blood clot (thanks to a Lupus related disorder) so the doctors had to put a new PICC line in my neck (my Frankenstein era). The doctor restricted my activity so a friend came by multiple times, picked up my DIRTY LAUNDRY, took it to her house and brought it back clean and folded. That’s true kindness to let me literally air my dirty laundry.

29. I’m involved with Invisible Illness Week because: Of #17.  These illnesses aren’t in the mainstream media.  But they need to be. Now that I have a voice through my blog that can reach many, I feel like it’s my responsibility and duty to talk about it.  Even if I have to figuratively air my dirty laundry to do it.

My 5 year old maturity level is making me chuckle at the fact that I just said doodie

30. The fact that you read this list makes me feel: Thankful.  Hopeful.  And vulnerable.

And while I intend to start discussing lyme and lupus more online, I still find it hard to talk about in person.  So if you see me in real life and ask how I’m doing, let me continue to answer “fine.”  My version of fine just happens to be different from yours.

20 thoughts on “Invisible Illness Week: Thirty Things You May Not Know About My Illness(es)”

  1. You know what I like the most about your post?! It makes me stop and think about the people I encounter every day. I try (I don’t always or even often succeed) to give people the benefit of the doubt and assume their crankiness is just because of a bad day. At the same time, I’m one of those people who always wonders what the people I encounter daily have as their story – I know that many of them are struggling (maybe with an invisible illness).

  2. Great post. Thanks for sharing this. I just subscribed to your blog or at least I think I did (I am having one of those brain fog days that I am sure you can relate to.) I can relate to all 30 points as I have been diagnosed with CFS/FM/chronic Lyme and it all falls under that umbrella of mysterious, invisible illnesses.

  3. This post nailed it! I also have an autoimmune disease Felty’s syndrome which is a rare form of RA. People see you as healthy even when we are fighting to stand erect. It’s very hard to go day to day planning things and not know exactly how we will be feeling on those days. I hate backing out of plans and obligations also, it makes me feel like such a loser. I have been lucky I was on an infusion drug called Rituxan and was in remission for about 3 great months, but for the last two weeks I can feel it coming to an end and it seems twice as bad after having that freedom for so long. It’s a constant give and take. We have to give in to our symptoms while the disease takes the best parts of us!.

  4. Thank you for opening up about your invisible illness. I found myself nodding along to so many of your replies even though narcolepsy is very different from lyme and lupus (although doctors originally thought I had lupus prior to my diagnosis). Cheers to you and anyone else that trucks through everyday with their own invisible struggles.

  5. Randomly looked at Twitter. There you were. Had Twitter less than a week. No clue what I’m doing quite yet. Reemerging in social media is a trip. I don’t know why I clicked on your blog/article. But I’m super thankful and feel so blessed because I did. Because of your transparency. Your courage and boldness. Your honesty. Your laughter. Your quirks. May the Lord Jesus Christ richly bless you and your family. I pray that He brings healing and restoration to your body, mind, soul, and heart. And above all, I pray you know how much He loves you… like seriously loves you. Never doubt His love for you. And know that none of your pain… none of the agony you’ve suffered has been in vain. There is a glorious purpose, though it may be impossible to see. Others have been blessed already because of what you’ve suffered. And they will continue to be blessed because of what you have suffered. I know. I sound like a lunatic. But I don’t care. I know the Lord led me to your site for a reason. Best Blessings to you! Psalm 27 & Psalm 46

  6. Man oh man, I could sit here and say something on every single point you made. People see me walking with my cane, being fairly young for it(43) and think I exaggerate my injury. (Ruptured disc, failed surgery, nerve damage into leg) I get looks when I use a handicapped parking space(I have a tag). Only my wife comes close to understand as she has sat by my bed and held me as I cried in pain for hours at a time. (The kids get it to varying degrees.) I know my injury is not totally invisible but the image of using a cane and having a limp to varying degrees when I dont use it pales in comparison to the reality of 24/7 pain with no respite, and the very serious possibility of falling randomly no matter the situation. (several concussions and a multitude of holes in walls are a result)

    I learned long ago(my parents actually taught me as a kid) not to judge someone by how they seem to be at first glance.

    People: “It must be nice to be in bed all day.”
    Me: “F*** YOU A$$HOLE, I want to be on the golf course all day!”

  7. This is an amazing, and we are applauding your honesty. This post is an excellent reminder to everyone that things are not always as they appear. You should save this for your children someday…no doubt they will appreciate your candor.-The Dose Girls

  8. I think it’s so important to blog about these things. It helps the rest of the world understand better and hopefully be more compassionate. My mother in law had a blood clotting disorder as well with her lupus. So hard.

  9. Yes, I know, I’m late getting here…
    You wrote so well. Good for you, opening up and telling people the truth about your reality. It does help us all remember to cut people some slack. We have no idea what others are going through.

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