Friday, January 22, 2010

30 Things About My Invisible Illness You May Not Know

I think I've posted this on facebook before but no on my blog. I found it today while browsing other blogs and decided I'd post it here as well. 

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Dysautonomia. Basically means my Autonomic Nervous System (ANS) which controls your auto-pilot bodily functions (those you don't have to conciously do, like heart rate, breathing, blinking, reproductive system, etc) is basically broken, if you will.  I have no specific Dys. diagnosis as I was told that I was just a different case. I have sleep problems, tachycardia, I "think" Mitral Valve Prolapse but not certain, it is on some of my medical information but not all, IBS, Black-outs, migraine syndrome (including the ones with headaches and the "silent" ones without the headache which typically cause stroke like symptoms and numbness), and a variety of other annoying little problems.

2. I was diagnosed with it in the year: 2009, almost a year ago now. Although the other things that I didn't know were a part of it, like the migraines, the problems with caffiene, other intestinal and stomach problems, etc began being diagnosed about 16 years ago when I was in 7th or 8th grade and they just kept coming.

3. But I had symptoms since: almost my entire life I've had problems that I am now informed were most likely due to my Dysautonomia.

4. The biggest adjustment I’ve had to make is: I think the hardest thing for me has been losing my independence and having to rely on others for help. Not being able to get outside and do all the mom/daughter things I have always wanted to do with my kids... and no, not shopping :) But taking my oldest to the lake fishing and things like that are not possible without someone to go with me and ensure that nothing happens to me while I'm out on the lake. I can't drive due to the migraines appearing at any moment affecting my vision and also there is the brain fog from the dys. which has noticeably shortened my reaction time and clarity of thought at times.  I think about the 3rd child I wanted to have, and the likely-hood of that happening is slim because I got worse with both of my pregnancies.  Getting used to the stares from people when I use a wheel chair at Wal-Mart because I have a lot of shopping to do, but I try and ignore it because the fact that I'm at Wal-Mart and not stuck at home is great for me!  Learning to slow down on my good days so that I have more of them, instead of waking up to say "I feel great today!" and then blowing all my energy within an hour or two and end up crashed for days or weeks afterwards! Learning to choose what's important like taking my kids outside and spending time with them,  and ignoring the things that to others are no brainers, like doing laundry or dishes, etc.  And the possibility that I might wake up tomorrow and need help getting dressed, or even using the shower chair to shower exhausts and sickens me to the point that I need assistance finishing up and getting out, dressed and to a chair or bed to rest.

5. Most people assume: that just because I'm up and walking today, that I'm feeling great! Or that I'm doing much better now! When most of the time it's taken a week of rest and being very careful not to over exhaust and to hydrate and stay hydrated, and to avoid any and all stress JUST to make it to a single event, like church and practice, or to a family dinner, or to the grocery store. I never just wake up and say "Lets run to the store!" or "Let's go to the park!" I have to make plans now, and ensure that I rest enough to have the energy and strength to do the planned activity.  And even then, I may wake up the morning of those plans, and they are thwarted by a bad day of Dys.

6. The hardest part about mornings are: a couple of things. Right now it's watching the sun rise because I'm still awake from the day before because of my insomnia. And if I have to get up and get dressed to be somewhere, I know it will take several hours of me paceing myself to not tire myself out in one go. I hate the morning nausea and headaches and stiffness. I hate the morning cloudiness I feel in my thinking. And I hate that after making it to the bathroom and then to my recliner I'm already tired and I just woke up!

7. My favorite medical TV show is: Grey's Anatomy and Private Practice, but mostly because I think they deal with weird medicine stuff very little... lol It's mostly their lives that are discussed. I used to watch House, but when you live with a weird, rare, incurable disorder that is hard to treat... it gets hard watching someone else have their mystery disease solved in an hour!

8. A gadget I couldn’t live without is: 1. my laptop and wireless connection. On days I'm stuck inside it's my window to the outside world. People to chat with, blogs to read, facebook connections, and games. Helps those horrible days to pass a lot faster. 2. my shower chair. Thanks to my mother in law, I'm able to shower without constant supervision and someone asking the whole time "are you ok?" lol  Although there are still days that even using my chair I have to ask someone to assist me. 3. my ipod and 4. my camera 5. the remote control 6. a cordless phone 7. a microwave... lol

9. The hardest part about nights are: ugghh... the insomnia. Not being able to fall asleep or actually falling asleep and waking every 15 minutes or so.

10. Each day I take: my meds, lots of gatorade and water

11. Regarding alternative treatments I: have not tried any other than exercise (got sicker due to my heart rate). I've come to the conclusion and reality that there are things that might help, but unless God heals me, I'll continue to fight this for the remainder of my life. I will try anything my doctor suggests though because I feel God opened the door and led me to her.

12. If I had to choose between an invisible illness or visible I would choose: I personally wouldn't "choose" either, but God created me. He alone knows the reason for this disease and my having it. If it brings glory to God in anyway, then so be it. I know this life is only temporary and I'm living my best to make Heaven my home. Whenever God sees fit to have me there, I know my body there will be perfect health! This life is fleeting but Heaven will be an eternity!!! That knowledge in itself is enough to give me a little more strength to make it another step closer!

13. Regarding working and career: Well I chose to be a stay at home mom and to school our children at home. So not being in a career doesn't bother me. But the fact that I have no "choice" in it anymore and that this disease has altered my plans as a stay at home mom, isn't so fun. When I chose to stay home with my kids and homeschool, I pictured us getting up early, on a schedule every day, and getting school work done and spending the remainder of the day doing something fun outdoors. Reality: Schedules are hard because my sleep is out of whack and I have to rest when I can. Outside activities when it's warm enough to enjoy make me sick especially if it's an active activity,  because I'm heat intolerant and it worsens my heart rate and makes me sick. So yeah, having to sacrifice the things I imagined for us, is hard, but I've learned that my children are happy and healthy and very smart children and they love me for who I am, not what I do or where we go!

14. People would be surprised to know: how isolated I feel. I spend every day of my week sitting at home with my kids, computer, and tv. Not much adult conversation. The only "friends" I have to chat with daily are my mom and mother in law. Other than them no one really calls. I get out of the house about once a week, on sunday for church. And occasionally someone will offer me a ride *husband works evenings* on Wednesday nights and that's 2 days I get out of the house per week. That is almost every single week, unless there is a dr. visit.

15. The hardest thing to accept about my new reality has been: knowing that I'm an outdoors girl, living with a disease that keeps me indoors most of the time. And giving up part of the future I imagined myself having.

16. Something I never thought I could do with my illness that I did was:  outreach and ministry because I am no longer able to get out and about. The funny thing is, I've made contact with more people through this blog and other websites and been able to email and chat with people about my faith in God, than I probably did before I got really sick. My weakness is making me spiritually stronger, and also giving me an opening to share God's love with people I would never have met otherwise! God is using my physical weaknesses to show me how to find spiritual strength!

17. The commercials about my illness: Commercials? About Dysautonomia? Is there even such a thing? The only thing I've found about my illness and this disease is a few websites on the internet, and I mean a small number of them. The majority of what I read about it is from other sufferers of it. Not the media, medical community, or our health systems.

18. Something I really miss doing since I was diagnosed is: spending long days out in the summer time fishing, going to the park and walking, cooking (I really miss cooking big meals), going to thrift stores and just leisurely plundering through the odds and ends looking for neat old stuff, and most of all probably would be traveling the distance home to visit with my parents, sister, and nieces and nephews. And of course missing days with my kids, because I'm stuck in bed.

19. It was really hard to have to give up: my independence and choice to do things.  My body dictates what I do now, or don't do I suppose.

20. A new hobby I have taken up since my diagnosis is: blogging and online gaming. Recently gotten back into learning HTML and CSS some. Well attempting to learn :)  I may rework this blog soon with what I'm learning!

21. If I could have one day of feeling normal again I would: go fishing with my daughters, Go camping for the first time (real camping, not cabin camping), Go to Disney World or somewhere my kids would love that requires a lot of walking and just enjoy it!  I don't know how I would fit all this into one day :)

22. My illness has taught me: that I am loved, cherished, and important. I have the best family, friends, and church family that anyone could ever have. And most of all, I've learned that God truly cares for each and every aspect of my life because he has provided and been there with me through all of this!

23. Want to know a secret? One thing people say that really bothers me is: "You should stop focusing on this disease, move on, and get better." I really and honestly wish I could remove the word "Dysautonomia" from my thoughts and I'd be all better!!! But last I checked, Dys. is a disease of the ANS, and not the thought system!!!

24. But I love it when people: say You're life and testimony is a blessing to me.

25. My favorite motto, scripture, quote that gets me through tough times is: 'But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.' Isaiah 40:31  Because I long for the day that I can walk and run and not be sick.

26. When someone is diagnosed I’d like to tell them: that when they feel they have no strength left to fight. When they feel that their last ounce of energy has been spent... look to Jesus. For only through Christ will we find the necessary strength to win this battle and the next one too.  "...I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do everything through Him who gives me strength." Philippians 4: 11b - 13, NIV.

27. Something that has surprised me about living with an illness is: how quickly I can go from feeling fine to needing help just to stand or dress myself.

28. The nicest thing someone did for me when I wasn’t feeling well was: wow, there are so many things... I guess the cards, prayer cloths, phone calls to check on me, help cleaning my house, help getting into church, the list goes on and on...  And I suppose that something that people tend to forget is nice, is realizing that I have problems with things, but you let me get through them with some dignity left by just silently supporting me. This is a true friend!

29. I’m involved with Invisible Illness Week because: there is so many people that have never heard of the disease even in the medical community! If you don't believe me, have an ambulance pick you up and they ask your history and this is part of it. And they ask you what it is!  Or go to an ER with a problem associated with Dys. that presents like a possible other problem (like my silent migraine that appeared as a stroke but wasn't) and have a Dr. who just can't find the answer and doesn't know anything about these problems look at you and tell you it's all in your mind and you should see a Shrink! (HONESTLY!! THIS HAPPENED TO ME!!!) Thank God for Dr.'s and medical staff who will listen and look for the answers instead of declaring a mental disorder wrongly!

30. The fact that you read this list makes me feel: that I truly have friends and family who love and care for me.


Rachel said...

Thanks for sharing this. It has been good to read a lot of these lists by my bloggy friends. We face a lot of the same stuff.

It's funny that you mentioned House. I tried watching that show last year after some of my friends kept going on and on about how good it is. I watched it a few times, and I really tried to like it, but I just couldn't. It wasn't relaxing or entertaining. It was just too stressful watching a show with a doctor with a horrible bedside manner. I deal with medical stuff too much anyway. When I watch tv I want it to be a break from reality!

hillary said...

Hey miranda!! I also have Dysautonomia and the same symptoms and some of the same meds as you and also my own blog about it too lol. I enjoyed reading your blog. Would love to know how you're doing and feeling, what helps and what doesn't. i was recently diagnosed last year, too, so it's definitely been a journey. also, I am a strong Christian too and love seeing that youre being bold about your faith and how important it is in our healing. You WILL be healed sister! Believe it! Praying for you.