Tuesday, September 9, 2014

30 Things About My Invisible Illness

In honor of Invisible Illness Awareness Week (Sept 8-14) I thought I would share 30 things about my illness! One of the biggest parts of awareness is education...so the more we share, the more people will be aware of what different diseases are like and what someone's story is.

1. The illnesses I live with are: Dysautonomia, Migraines, and muscle/nerve damage that happened when my birthmother was pregnant with me. To keep things simple, I usually just say I have “dysautonomia,” an umbrella term for dysregulation of the autonomic nervous system. This is the main thing I have to deal with on a daily basis. While my muscle/nerve damage is significant, it won't progress like dysautonomia can and doesn't affect me too much these days. 

2. I was diagnosed with it in the year: I was not officially and completely diagnosed until last summer, June 2013.

3. But I had symptoms since: I have had symptoms for as long as I can remember, since at least 8-10.

4. The biggest adjustment I’ve had to make is: realizing I physically can't do what people around me can, and having to make the mental adjustment that this is okay and I can do things my own way

5. Most people assume: Because I don't look sick that I'm not. Or if I'm in my wheelchair that I'm faking it because I can move my legs. 

6. The hardest part about mornings is: not focusing on my pain level and figuring out how that will affect my day. And realizing that my night of sleep did nothing for my level of exhaustion.

7. My favorite medical TV show is: House, of course!

8. A gadget that I especially appreciate is: voice recognition software. Although my most communicated with friends know that I often have misunderstood words on there when I forget to proof-read, it allows me to text and type without wearing out my hands.

9. The hardest part about nights is: I am always completed exhausted and have the hardest time both falling and staying asleep.

10. Each day I take just a couple vitamins and supplements.

11. Regarding alternative treatments I: will use those that are helpful for me, but massages have been the only thing that makes a difference - and even that is short lived so I don't do it often.

12. If I had to choose between an invisible illness or a visible illness, I would choose: obviously if I had to choose I would choose neither even though I have both. But God has given me this life for a reason...so it's in His hands.

13. Regarding working and career: I struggle a lot with being up and walking around for my job, but thankfully I am surrounded by supportive co-workers and most of the time can sit when I need to.

14. People would be surprised to know: that I am much more tired and weak than I appear to be.

15. The hardest thing to accept about my reality has been: not ever having a break from the pain and fatigue.

16. Something I never thought I could do with my illness that I did was: graduate with my masters (almost!) and hold down a job at the same time.

17. The commercials about my illness: are nonexistent.

18. Something I really miss doing since I was diagnosed is: I've been sick almost my whole life, so I don't have a "turning point" where I suddenly got sick. But as time goes on my endurance has gotten less, so I definitely miss being able to be as active as I was when I was younger.

19. It was really hard to have to give up: being as independent as I want to be. My memory has also significantly decreased and it's hard to remember things or when I forget easy words. 

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: I'm not sure I really know what "normal" feels like. But if I could have one day to have no pain or exhaustion I would do everything to be super active.

22. My illness has taught me: God has a much bigger plan for me than I had for myself. And sometimes that requires humbling myself and accepting help against my hard-headedness, to take care of the level of health I do have.

23. Want to know a secret? One thing people say that gets under my skin is: “Your life must be so hard/suck/be terrible"

24. But I love it when people: don't treat me any differently, and don't make me feel bad about having to modify plans or if I forget words/conversations or repeat something. 

25. My favorite Scripture that gets me through tough times is: "In the same way the Spirit also helps our weakness; for we do not know how to pray as we should, but the Spirit Himself intercedes for us with groanings too deep for words; and He who searches the hearts knows what the mind of the Spirit is, because He intercedes for the saints according to the will of God. And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose." Romans 8:26-28

26. When someone is diagnosed I’d like to tell them: I really understand what it's like, and I'm here if you want to vent. 

27. Something that has surprised me about living with an illness is: that people from the outside looking in have a lot of judgement and opinions about things they have no idea about. 

28. The nicest thing someone did for me when I wasn’t feeling well was: just being there, whether its physically or emotionally. A lot of times my parents will bring me food so I don't have to cook something. 

29. I’m involved with Invisible Illness Week because: they are not understood by many, and don't get a lot of spotlight. So many diseases people need to be aware and educated about, and those who are sick need to know they aren't alone. 

30. The fact that you read this list makes me feel: grateful.

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