Monday, September 19, 2011

30 Things About My Invisible Illness You May Not Know

The following post is something the Invisible Illness Websites asks people to do if they want to.  I didn't do it last year but decided this year was a good time. I think my answers are better this year than they would have been last year.

1. The illness I live with is:  Atrial fibrillation, arthritis, mild depression, PTSD, panic disorder, obesity
2. I was diagnosed with it in the year:  The atrial fibrillation was diagnosed in May 1994.  The arthritis  was diagnosed in 2001.  The mental health issues were diagnosed in 2007.  I became officially disabled in 2007.
3. But I had symptoms since:  I've had symptoms of the atrial fibrillation since 1990, the arthritis for years before it was diagnosed, the mental issues I've had most of my life.
4. The biggest adjustment I’ve had to make is:  Loss of my independence.  I gave up my car when I was at my sickest and now that I feel better, I still have no car.  I need assistance with household chores at times such as a full house cleaning once a month.  My mobility has drastically changed and even though I can walk, I use a cane and can only walk or stand for a very short time period.  I need to use the motorized carts if I go shopping.  And I own my own wheelchair which I am thankful for but I have not fully accepted.
5. Most people assume:  That I am not as sick as I claim to be and that I am faking most of the time.  At least the ones I know from before I got sick and at the time I got sick.  The ones I have met since my diagnoses have been much more accepting.
6. The hardest part about mornings are:  Mornings are actually my best time IF I have had enough sleep the night before and IF it isn't one of those days when every inch of my body aches.  I had both knees replaced so the stiffness problem for me grows worse over the course of the day.  Nights are worse for stiffness for me.
7. My favorite medical TV show is:  HOUSE
8. A gadget I couldn’t live without is:  My computer
9. The hardest part about nights are:  That I can't sleep without taking sleep aids and sometimes they don't even work.  I am a natural night owl so I have always stayed up late anyway, but without the sleep aids I would not sleep til 5 or 6 am and then have to sleep most of the day.  I want to participate in life so I have to get some good sleep.
10. Each day I take:  9 pills regularly plus either extra strength Tylenol or Vicodin for pain as needed.
11. Regarding alternative treatments I: am not interested in alternative treatments at this time.  I don't trust them.
12. If I had to choose between an invisible illness or visible I would choose: I think I would choose the invisible because I have the visible ones as well and I don't like the stares I get or the snide comments you can hear as you pass by some ignorant people.
13. Regarding working and career:  I enjoyed some of my jobs I've had but I've always had difficulty on jobs until the last two jobs I had.  I always wanted my career to be full time wife and mom, but that didn't always work.  After I was divorced I had to support myself so working became a hugely stressful part of my life, adding to the stress that contributed to the atrial fibrillation.  I worked from home for 15 months after being disabled but the stress was still too much.  Not having to work leaves me a lot less income for sure, but it also reduced the stress levels immensely.  I've learned how to be content with what I have and just not want so much I don't need.
14. People would be surprised to know:  Those people who see me as faking would be surprised to know how limited my activities have really become.  Those who do know I am sick would be surprised to know that there are more things that I can do than even I thought possible and with assistance from friends and family I could do even more.
15. The hardest thing to accept about my new reality has been: That I lost friends that I thought were real friends.  When I was at my sickest and needed those friends, they had turned their backs on me.  It's been over 4 years and I still never hear from any of them.
16. Something I never thought I could do with my illness that I did was: Go on vacation this past August!  It was difficult and not having done this in my condition before, or even healthy, I was thoroughly unprepared for a lot of things.  But I learned from that and if I get to go somewhere again, I will know more about what to do ahead of time to make the trip go more smoothly.
17. The commercials about my illness:I don't watch TV and don't see many commercials.  But the one that gets me is the "Hoveround" and the person sitting on the edge of the Grand Canyon.  I've never been to the Grand Canyon, but after the trip I just went on with just a regular wheelchair, I can only imagine the difficulties of getting that scooter up there.
18. Something I really miss doing since I was diagnosed is:Being active in my church and going out with my friends from church, along with just having my friends there to talk to or play games with like we used to.  It is like I suddenly became some kind of freak that they don't want to look at.
19. It was really hard to have to give up:  My car.  I want another car but cannot afford to buy myself one.  I also am not sure I could afford the insurance.
20. A new hobby I have taken up since my diagnosis is: It's not a hobby actually, but I have become involved in an online support group for people who have become victims of romance scammers.  It is a very rewarding thing that I am actually able to do at any time of any day.
21. If I could have one day of feeling normal again I would:That would require also having a car, but if I could feel normal for one day I would get in my car, take my fishing equipment with me, my camera, and set out on a road trip for just one day on back roads so I can see the landscape and nature.  Now this is something I can do on any day if I had assistance but getting that is not easy.
22. My illness has taught me: I've learned who my real friends are and they are wonderful people!  I've learned that I am still a capable person and that I can do just about anything I ever could do before but I just need some help doing it.  I've learned that getting help is not easy.
23. Want to know a secret? One thing people say that gets under my skin is: One of two--"You can do better than that." or "Get over it!" (depression issues).  Another one would have to be when they say they will get together soon and take me somewhere fun but then never do.  Sorry that's 3 instead of 1.
24. But I love it when people: Follow through on their promises, offer assistance, ask me what they can do for me or if I need anything.  I would love to have a friend who enjoyed the outdoor activities I enjoy and had free time to take me so we could have some fun together.
25. My favorite motto, scripture, quote that gets me through tough times is: It can be different ones at different times. I don't think there is any specific one.
26. When someone is diagnosed I’d like to tell them: If you don't like or trust your doctor, keep looking until you find one that is good for you.  They all have different styles.  Don't just settle for the first one, unless he/she is great!
27. Something that has surprised me about living with an illness is: How people you have known for years and been close to and done things with regulary can just walk away when you need them.  The same thing for a church and its pastors and staff.  They are the ones who are supposed to be there for you especially when you are part of their membership.  They should not abandon you when you are sick.
28. The nicest thing someone did for me when I wasn’t feeling well was: Brought me a meal, cleaned my house, ran errands for me...take your pick.
29. I’m involved with Invisible Illness Week because: I've seen it on Facebook for the past couple years and I like the message presented.
30. The fact that you read this list makes me feel: Either you are curious about what I wrote or you really care.  Either one, I am glad you are reading it because maybe it will help you understand the next person who comes along in your life and has an invisible illness. 

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