Friday, September 16, 2011

30 Things About Me - Blogging for Invisible Illness Week

Courtesy Google Images
In honor of invisible illness week (geez, I almost missed it!), here are the 30 things I would like to share with you about what I live with every day:

1. The illness I live with is: Fibromyalgia, Arthritis, Sciatica, Bipolar Disorder, Panic Disorder, Generalized Anxiety Disorder, Agoraphobia. And gastroesophageal reflux disease, but even though it's fairly severe, it's not on my top ten list of things that bother me every day.

2. I was diagnosed with it in the year: I was diagnosed with fibromyalgia sometime before 2001. It was confirmed by a rheumatologist, along with the arthritis in 2006. The sciatica was diagnosed this year. The bipolar disorder, panic disorder, generalized anxiety disorder, and agoraphobia were diagnosed in 2000. The reflux was diagnosed in 2007 or 2008, after I felt such bad chest pain that I thought I was having a heart attack.

3. But I had symptoms since: I've had physical symptoms of fibromyalgia since I was 19. I've had arthritis and sciatic symptoms since at least 2006 and maybe before that. I suffered from severe depression, anxiety, and suicidal ideation from the time I was 13 years old. The mania part of the bipolar disorder started in my mid to late 20's.

4. The biggest adjustment I’ve had to make is: Pacing myself. I used to be a Type A personality and it really stresses me out when I have to make sure I don't schedule more than one or two things per day that involve going out, or that I sometimes might have to come home before I really want to. I also have to force myself to be a listener, because when you are manic, no one can get a word in edgewise. With the agoraphobia, I've had to severely adjust just going out, because the fear of having a panic attack can make me cancel and reschedule until I can't possibly reschedule anymore. While it used to be easy to just jump in the car and go, now I have to plan it as far ahead as possible, make sure I have all of my medications with me in case I am out longer than I expected to be, and sometimes I simply can't go out the door, no matter how much I want to. I think the hardest adjustment is living with the fear of going out.

5. Most people assume: That I'm lazy. Okay, I may be projecting on this one, but I feel like since I do a lot of lying around because the fibro is exhausting and causes me chronic pain, I must look like the laziest person on the planet. More realistically, people probably assume there is nothing wrong with me or that I am a hypochondriac because I look healthy.

6. The hardest part about mornings are: That they exist. I suffer from insomnia, either from the fibro, the bipolar, or both. I have always had a very difficult time going to sleep at night and mornings are when my pain is at its highest level. I have had to adjust my schedule to go with my body's needs and that does not always coincide with my family's needs. I still have two children in the public school system and getting up at 6:30 to help my youngest out the door is hard. I always go back to bed once Justin takes him to the bus stop. Justin also has to walk the dog in the morning because I just can't. Also, sometimes people get irritated with me that I will no longer schedule anything in the mornings, but I am beginning to insist on it because mornings are so hard for me.

7. My favorite medical TV show is: House. I love that he is always diagnosing something really strange and rare and then coming up with a cure, all within an hour. I wish I had a real life House who could fix me, but I'm pretty lucky in the doctor department.

8. A gadget I couldn’t live without is: My computer. It's almost my entire social life. Because of my illnesses, I don't have a lot of "real life" friends, so the connections I've made through Facebook and blogging are very important to me. I'm also very attached to my kindle and probably couldn't live without it.

9. The hardest part about nights are: Going to sleep. But I have finally gotten into a routine and figured out the best time to take my medications so that I can maximize my sleep time. This said, there are still a lot of nights when I have to get up and try again later.

10. Each day I take __ pills & vitamins. (No comments, please) 26. If it's a bad pain day, more. These are not all pain pills, as I have multiple illnesses and conditions.

11. Regarding alternative treatments I: I have tried acupuncture (which went just horribly), chiropractic care, massage, and warm water therapy. The most helpful alternative treatments are massage and the hot tub my parents were generous enough to give us when they decided to sell their house. I would probably live in the hot tub if they came up with a water proof computer.

12. If I had to choose between an invisible illness or visible I would choose: Visible. I get tired of knowing that no one can see the illnesses and thinking that I'm fine and if I would just "suck it up," I could do anything I wanted to. At least with a visible illness, you are treated as if your illness is legitimate.

13. Regarding working and career: I worked as a legal assistant for ten years before I became too disabled to work. I miss being vitally important to someone else's work and knowing that I am accomplishing something and doing a good job. I was out of the work force for 12 years, went back for a year, and that year was hell on earth for multiple reasons. I miss working, but I am happy with what I am doing now. It would be nice to get paid for it though.

14. People would be surprised to know: I'm really happy to be the age that I am and that my kids are no longer cuddly babies. I feel that I am a much more mature person than I was even ten years ago and that I have learned a lot from my illnesses. I also have figured out that you can't tell what is going on with someone else just by looking at them, so always give the benefit of the doubt.

15. The hardest thing to accept about my new reality has been: That I might have to give up a hobby that I have been doing for over 30 years. I recently realized that my cross stitching was flaring my fibro pain and I had some agonizing mental moments because I cannot imagine not having sewing in my life. I have still not accepted that I am going to have to give it up and I am trying to figure out a way I can keep doing it, even if I have to scale back.

16. Something I never thought I could do with my illness that I did was: Go back to work for a year. I wouldn't want to do it again.

17. The commercials about my illness: I am happy to see that fibromyalgia is getting some commercials from the company that produces lyrica, because most people don't know what the illness is. The commercial gives a pretty good explanation, but it could take it further. Fibromyalgia is an actual change to the central nervous system and once those neural pathways have been altered, there is no going back. I hate the commercials for the mental illness drugs. They seem to be pushing extremely dangerous drugs for things like depression. Anti-psychotics are not the same as anti-depressants and it disturbs me that the drug companies think it's okay for patients to go in and tell their doctors that they need them.

18. Something I really miss doing since I was diagnosed is: Being a morning person. I used to be the first one in to the office and usually had a head start on my day. Now, I have to sleep so much that I usually don't get really rolling on my day until lunchtime.

19. It was really hard to have to give up: Being able to travel. I never traveled much, but I now have to limit any trips I take to two hours away maximum. It scares me that my parents are planning to move to South Carolina, because I know that trip is going to be stretching my physical limits, even if I fly down.

20. A new hobby I have taken up since my diagnosis is: Blogging and writing for a couple of websites. I've always loved to write and it's a perfect job for me, since I can work when I feel up to it and not work when I don't. It would be nice if the hobby turned into a paying job someday.

21. If I could have one day of feeling normal again I would: I'm not sure what "normal" feels like, so I don't really know the answer to this question. I might want to spend the day with my husband doing something I normally am not physically able to do that he would enjoy. But not golfing.

22. My illness has taught me: More patience, to be kind to myself, not to rush to judgments about what other people say because I don't know what they might be going through that isn't showing.

23. Want to know a secret? One thing people say that gets under my skin is: Are you taking your medication? Conversely, what did you take?

24. But I love it when people: Read my blog and comment. Or offer to do something for me that is hard to do myself.

25. My favorite motto, scripture, quote that gets me through tough times is: This too shall pass.

26. When someone is diagnosed I’d like to tell them: I've been there and you can talk to me if you need someone to talk to.

27. Something that has surprised me about living with an illness is: That so many people are also living with an illness. Or multiple illnesses.

28. The nicest thing someone did for me when I wasn’t feeling well was: After my hysterectomy in 2009, the neighbors all got together and made dinners for us for a week after the surgery. This really took the burden off of Justin. Also, I can't leave out that Justin does a lot of things so that I don't have to. I really couldn't handle these illnesses without him.

29. I’m involved with Invisible Illness Week because: I want people to know that just because a person looks fine, it doesn't mean that they are. And if you know someone has an illness, please don't pretend it doesn't exist and that they can do what you want them to do if they just will force themselves to do it. Just because I don't look sick does not mean I'm okay or feeling good or can do what you are asking me to do.

30. The fact that you read this list makes me feel: Validated. Thank you so much for reading.



No comments:

Post a Comment

I'd love to hear from you. Feel free to tag back to your blog in the body of your message. Comments are my favorite!