30 Things About My Invisible Illness You May Not Know

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30 THINGS ABOUT MY INVISIBLE ILLNESS YOU MAY NOT KNOW

1. The illness I live with is: Rheumatoid Disease/Arthritis and Celiac Disease.

2. I was diagnosed with it in the year: December 2012 for Celiac, and June 2013 for Rheumatoid Disease

3. But I had symptoms since: Severe symptoms since Aug 2011

4. The biggest adjustment I’ve had to make is: Allowing my OCD to not drive me nuts. Getting used to, and being ok with a messy house/life.

5. Most people assume: I am a hypochondriac and over reacting. That I am fine and it is all in my head.

6. The hardest part about mornings are: Getting out of bed to get me, my children, and my work things together, out the door and to work/school on time, all the while looking decent.

7. My favorite medical TV show is: House and/or Grey’s Anatomy. You can never get enough of Scrubs, however.

8. A gadget I couldn’t live without is: My smartphone or my laptop. I need these things!

9. The hardest part about nights are: Getting and staying asleep. Waking up multiple times during the night in both pain and a panic. The nightmares my medications cause.

10. Each day I take _18_ pills & vitamins. (No comments, please)

11. Regarding alternative treatments I: Tried changing my diet, exercise, and avoiding certain medications.

12. If I had to choose between an invisible illness or visible I would choose: Invisible. Though it is hard to deal with, as people tend to think I am faking, I at least can still feel pretty most days, despite feelings completely and utterly disgusting inside.

13. Regarding working and career: It becomes increasingly difficult to get up and go to work when I am having a flare. I force myself to go to work every day, but sometimes I am so tired I almost fall asleep at work and must leave early. I support three children on my own, so I Have no choice.

14. People would be surprised to know: That I am more miserable than I let on. That I have a lot less faith in my journey than I show. That at the end of the day, I am generally on the verge of crying. I am insanely lonely.

15. The hardest thing to accept about my new reality has been: That this is never going to go away, and I will always be suffering in some way or another. That I am never going to be able to work a hard labor job, go home and STILL have energy to keep up with my children.

17. The commercials about my illness: Are misleading and frustrating.

18. Something I really miss doing since I was diagnosed is: Dancing, and playing with my kids. Running, and working out.

19. It was really hard to have to give up: My active life. Going out with friends, working 14 hour days and still having energy for everything else.

20. A new hobby I have taken up since my diagnosis is: Blogging. This is really the best outlet I have right now, and as much as I would love to take on other hobbies, this is the one I do the most. I did dive more into my photography, but it goes back and forth on how well or poopy I am feeling.

21. If I could have one day of feeling normal again I would: Go dancing! Take my kids to the park and run around with them. Jump on a trampoline, and hike as high as I can go. Photograph every moment of it!

22. My illness has taught me: That I don’t have to do everything on my own. It is ok to ask for help, and I should probably ask for more than I already do.

23. Want to know a secret? One thing people say that gets under my skin is: “You’re strong, you can get through this.” – I appreciate the encouraging words, however it feels more like an excuse to not help me, and it makes me feel like I can’t ask for help. That I am expected to do it all on my own.

24. But I love it when people: Understand where I am coming from, and treat my situation as it is. I do not want sympathy, I want understanding. Offering to get me a drink, or offering to clean up after dinner is MORE amazing than anyone can ever guess.

25. My favorite motto, scripture, quote that gets me through tough times is: It is not those who revile or strike you who insult you, but your opinion that these things are insulting. In that same respect, it is not the illness that causes my misery, but how I handle my illness. My happiness is a state of mind, whether I am feverish on the couch, or having a perfect day.

26. When someone is diagnosed I’d like to tell them: You are not alone. Don’t let this illness isolate you from those you love, and those who love you. Let people help you! They love you, and that is why they try!

27. Something that has surprised me about living with an illness is: How much people treat me differently. How they don’t even seem to want to spend time with me anymore. It is so strange to me how many people I felt were there for me, but when I fell ill disappeared.

28. The nicest thing someone did for me when I wasn’t feeling well was: Rub my sore muscles, clean my house, and help with my kids. My neighbor is a great person, and he comes over from time to time to help me. He has diabetes, so it means even more to me on days I very much need it.

29. I’m involved with Invisible Illness Week because: Because I have one. My sister has one. My brother has one. We all suffer, and we don’t need to be alone.

30. The fact that you read this list makes me feel: Vulnerable. I hate being sick, and I hate knowing the pain I feel needs to be expressed in order for me to handle it. But it also makes me happy that you are willing to jump into my world and allow me to share. It is comforting to know I am not alone.

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

  1. I just read several of your blog posts, and I thought they were really well written. Even though we do not suffer with the exact same illnesses, your emotions and your thoughts that you expressed mirrored many of mine. Just want to let you know that I am with you, and will keep reading. Thanks also for reading my blog, I really appreciate it. I’m new at blogging but it does seem to really be a great outlet. I’m sorry for what you are going through. I fell ill in my 20’s and it really sucks when you are young and you get hit with something like this. I know how devastating it can be. I don’t know what to say, except I understand. Keep writing… xoxo ~ Julie (The Nocturnal Laundress)

    • Thank you! That means a lot to me. I think those with chronic pain and/or illness understand each other on a level that they couldn’t before the pain. It’s a harsh, and unpleasant thing to connect over, but if you’re going to be ill, connecting with other people who understand you can help in ways that you wouldn’t otherwise know.

  2. I think your posts are very well written and I can definitely relate to being in so much pain that you cannot get a decent night’s sleep. You do become irritable when you are pain. People cannot relate unless they are going through that. Being in pain is not easy to see when most people look at you unless they really know you. I have two book suggestions for you The New Arithritis Cure Eliminate Arthritis and Fibromyalgia Pain Permanently by Dr. Bruce Fife and The Personal Paleo Code by Chris Kresser. It sounds like your celiac disease is probably the root cause of your rheumatoid arthritis. I do not know what diet changes you have tried but I have found a lot of relief from most of my fibromyalgia symptoms from following the Whole 30 version of the Paleo Diet. The Whole 30 is discussed in It Starts With Food by Dallas and Melissa Hartwig. I hope all or one of these books will be helpful for you.

  3. I think your posts are very well written. I can definitely relate to being in pain and not being able to get a decent’s night sleep. Being irritable from being in pain and from lack of sleep. I have three book suggestions for you: The Personal Paleo Code by Chris Kresser, The New Arithritis Cure by Dr. Bruce Fife and It Starts With Food by Melissa and Dallas Hartwig. It sounds like the root cause of your rheumatoid arthritis might be your celiac disease. I have found a lot of relief from most of my fibromyalgia symptoms by following the Whole 30 version of the Paleo Diet. I hope these resources will be helpful for you.

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