30 Things About My Invisible Illness You May Not Know

722629f4aa847cc715c213f8207bd724fight for my health

 

30 Things About My Invisible Illness (AKA: Ehlers Danlos) You May Not Know

1. The illness(s) I live with is: Ehlers Danlos – Classic and Hypermoblility types, Sjogren’s Syndrome, Fibromyalgia, and Lupus
2. I was diagnosed with it in the year: EDS in April 2015, SS in May 2015, Fibro 1994, and Lupus 2002
3. But I had symptoms since: varying symptoms since I can remember.  Usually blown off to being klutzy or clumsy or just awkward.
4. The biggest adjustment I’ve had to make is: having the people I care the most not understand what is going on.
5. Most people assume: I’m making excuses or that I am trying to get out of something when really I can’t do whatever it is that is being asked of me.
6. The hardest part about mornings are: Making sure my daughter is up on time and ready and fed and all that and I haven’t lost my mind in the process.
7. My favorite medical TV show is:  Chicago Fire
8. A gadget I couldn’t live without is:  Those handy squishy things to put over jar lids to help me open them.
9. The hardest part about nights are: SLEEP
10. Each day I take _11_ pills & vitamins. (No comments, please) RIGHT NOW IT’S 11 (TOMORROW I SEE THE DOC)
11. Regarding alternative treatments I:  I absolutely LOVE hot stone therapy.  I can’t afford it but once in a blue moon.  I think most alternative therapies do work for me.  You have to be rich to continue with them though.
12. If I had to choose between an invisible illness or visible I would choose: at this point, I don’t know which I would want…neither!
13. Regarding working and career: I miss working.  I have never really had a career since this hit me so early on in college.  I never got to experience a career.  That makes me terribly sad.
14. People would be surprised to know: There are still a lot of things I would love to do if given the chance.  If able to get pain under control and legs/hips = ability to stand or walk better
15. The hardest thing to accept about my new reality has been:  not knowing from one day to the next how my body will be responding to the weather, or the temperature or the light or sound, etc.
16. Something I never thought I could do with my illness that I did was: learn so much about it.
17. The commercials about my illness: I haven’t seen many here in Minnesota
18. Something I really miss doing since I was diagnosed is: running around, playing hard with my daughter, riding bike
19. It was really hard to have to give up: bike riding
20. A new hobby I have taken up since my diagnosis is: lots of walking
21. If I could have one day of feeling normal again I would: go camping and hiking, canoeing, boating, spend the day with my daughter out in the woods just having adventure after adventure
22. My illness has taught me: slowing down is ok
23. Want to know a secret? One thing people say that gets under my skin is:  at least you are still alive with your daughter.
24. But I love it when people: take time to laugh and joke and treat me like myself, like nothing is wrong.
25. My favorite motto, scripture, quote that gets me through tough times is: …I PRESS ON…..
26. When someone is diagnosed I’d like to tell them:  It takes a little while to adjust, but once you get your bearings, friends gather, new and old, and we stick together like glue and we gotta lotta living to do.
27. Something that has surprised me about living with an illness is:  there are so many supportive people that live far away that are just as supportive as the ones close by.  I love them just the same.
28. The nicest thing someone did for me when I wasn’t feeling well was:  She read to me.  She read me stories, all sorts of stories.
29. I’m involved with Invisible Illness Week because:  Invisible Illnesses need to be made aware of.  There are so many different kinds and so many different ones that don’t get the feedback that others do.  Take time to read about invisible illnesses.
30. The fact that you read this list makes me feel: blessed and honored.  Thank you. ❤

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I always say……

Here it is….SEPTEMBER!!! I always say that I am going to write more. I am going to keep blogging more. I am going to post more and write my thoughts and blah blah blah…….
whelp…..as you can see from how long ago my last post was……I didn’t. I haven’t. And here I am again. But I’m not saying any of that this time. I am just saying…I am going to write whenever I can.
But…..September is Invisible Illness Awareness Month. At the end of the month will be Invisible Illness Awareness Week. So, I know that I will write a bit about what is happening in that arena.

pain cushion

just thinking

Just something that popped in my head…feel free to ignore

How does one measure “quality of life”?
Do they measure it by the minutes you’re alive?
The days you “walk”?
The days you can eat?
What?

Because as it stands….I don’t feel like this is quality of life at all, but more like QUANTITY of life. Struggling to get things done only to become exhausted by simple things or being constantly in pain is NOT what I would consider QUALITY.

To me, “quality” emphasizes one’s ability to enjoy life–even it’s ups and downs. It means you aren’t wondering if tonight will be the night you stop breathing and your heart stops beating longer than a few seconds and don’t wake up the next morning. It means you can get things done without being half way done because exhaustion or pain hits and floors you. It means you are able to be productive at something for longer than a couple hours (IF you’re lucky). It means not having to beg the Universe or God to PLEASE help. It means not being judged by others that you’re overreacting because your stupid body wasn’t made right. Or even judging because your body just doesn’t work like it used to (which everyone expects you to do or be).

My whole life I struggled to be “normal”; convincing myself that all “this” was in my head. Well, it turns out I *do* have something wrong with my head and because all the evaluations and the doctor appointments, these invisible illnesses are real. I have always been clumsy, always falling down or tripping.  That is how I earned the nickname Grace from my family.

It’s all so frustrating to learn you have lived a lie your whole life and doctors made you think you were “crazy” or a hypochondriac….when in reality—you weren’t/aren’t. And because of that lie, your body suffers the consequences. Everything I ever hoped for or dreamed of was killed in an instant when the multiple diagnoses came out of the woodwork as I have gotten older.  Diagnoses that began when I was 17…and still continue today.   It’s hard not to get depressed when you don’t know where to turn or what comes next. The only thing I do now is go to doctors or stay at home.  I try very hard to keep up with daily living with my 10 year old.  I want her to experience music, nature, art, well, anything  that will enhance her life and help her to learn about the world.  I want her to always know she is loved.  I am pretty sure she knows this.  But reminding her is becoming habit.  There is huge part of me that wants to giver her all the things that I didn’t have growing up.

Limited or fixed income is hard.  It puts a crimp in many activities.  That makes the QUALITY of life more difficult.  I pray and hope that this pain doesn’t slow me down so much that  I can’t enjoy K’s growing up and becoming a young lady.

happiness is