BEA'S BOOK NOOK "I can't imagine a man really enjoying a book and reading it only once." C. S. Lewis “If one cannot enjoy reading a book over and over again, there is no use in reading it at all.” ― Oscar Wilde

Tuesday, September 14, 2010

30 Things About my Invisible Illnesses

So, there are several different events and occasions happening this week. One, as mentioned in yesterday's post, is Book Blogger Appreciation Week. The subject for today's BBAW post was to swap places with another blogger and also interview each other. Since I wasn't on the ball and joined BBAW very late, this post is instead related to the weeks other commemoration: Invisible Chronic Illness Week. 

I am using the format that another blogger chose for her post on the subject.

30 THINGS ABOUT MY INVISIBLE ILLNESS(ES) YOU MAY NOT KNOW


1. The illnesses I live with are: 

Allergies, environmental - diagnosed 1984, reconfirmed 2006

Allergies, food - diagnosed 2002

Allergic eczema - diagnosed 2008

Ankylosing Spondylitis - diagnosed 1993

Asthma - initial diagnosis 1992, initial occurrences began in mid 80's

Depression - diagnosed 1985
 
Hypothyroidism -  diagnosed 1995


2. I was diagnosed with it in the year: (refer to 1.)
3. But I had symptoms since: (refer to 1.)
4. The biggest adjustment I’ve had to make is: accepting my limitations and asking for help. I still struggle with both of those; I've never been good at admitting weakness and will often go out of my way to deny it. As you can imagine, that's not a helpful technique. 


5. Most people assume: Oh, where to start? ** eye roll**  1) I don't look or sound ill or "off" so I must be healthy, 2) since I look healthy, I must be lazy, or a slacker, or (insert noun or adjective of choice) or I would ....more often. Again, insert activity of choice -  take out the trash, exercise more, etc.

6. The hardest part about mornings are: getting motivated. I'm not a morning person anyway so if I'm stiff, in pain, congested, coughing, short of breath, what have you, motivation is even harder to come by. 

7. My favorite medical TV show is: a tie between M*A*S*H and House.

8. A gadget I couldn’t live without is: another tie, this time between my nebulizer and my computer. The neb cuz I need it to breathe; the computer because I can still "talk" with friends and acquaintances, pursue certain hobbies, and even do mundane tasks such as paying bills. Those are all very important when I am not well; there have been days and weeks when the computer was all that kept me sane.

9. The hardest part about nights are: sometimes falling asleep, sometimes staying asleep. Pain and breathing problems interfere with sleep as do the drugs I take to deal with them.

10. Each day I take __ pills & vitamins: On a healthy day,  20-30  plus 2 inhalers, a nasal spray, and 2 prescription skin creams. When I have a flare of any variety, add 6-10 more pills per day, and/or an extra inhaler and/or the nebulizer.

11. Regarding alternative treatments I: haven't really tried any.

12. If I had to choose between an invisible illness or visible I would choose: probably something more visible though if I had a choice, I'd prefer none at all.

13. Regarding working and career: Oy. The allergies and asthma have had the biggest, and worst, impact on my work. I look normal so often coworkers forget or just don't believe that the limitations exist and are real. I have to fight for my rights to safe working conditions and to be out absent when necessary. 

14. People would be surprised to know: Hmmm, not sure. Maybe that I just want to be normal, that I don't like being ill so often and needing special accommodations. I just want to live a normal life.



15. The hardest thing to accept about my new reality has been: The limitations, especially socially. My food allergies and my severe asthma really limit where I can go, what I can do, even what items friends and family have in their own homes when I come over. It's one thing to stay home by choice because I'm an introvert but being forced to stay home, to stay away from stores, restaurants, public gatherings, etc. is HUGELY depressing for me. Hmmm, maybe that's what would most surprise people about me.


16. Something I never thought I could do with my illness that I did was: Safely travel on airplane AND safely be in a public gathering with people I'd never met who were willing ot accommodate my health conditions.
17. The commercials about my illness: Well, the ones for depression can be pretty depressing; the allergy and asthma ones tend to exclude people like myself who have the extreme forms.


18. Something I really miss doing since I was diagnosed is: I miss eating a whole lot of foods, I miss being able to go where I want and when, and I miss participating in walk-a-thons.
19. It was really hard to have to give up: See above

20. A new hobby I have taken up since my diagnosis is: online discussion boards and book reviews.
 
21. If I could have one day of feeling normal again I would: do a walk-a-thon then go out for Indian food and have apple pie for dessert. 

22. My illness has taught  is teaching me: to ask for help, to accept help, and to be creative about what I can do.

23. One thing people say that gets under my skin is: "Oh, I thought just a little bit of spice would be ok for you!" AAARRRRRRRRRRRGGGGGGGGGGGHHHHHHHHH!!!!!!!!!

24. But I love it when people: 1) offer to help without expecting anything in return and,  2) ask me how I am because they really want to know and they care about me.

25. My favorite motto, quote that gets me through tough times is: I don't have one.

26. When someone is diagnosed I’d like to tell them: Don't just sit back and accept it; see doctors, talk to them but also do your own research and ask questions. Look for help, accept help, be creative with solutions to your problems. Don't give up.

27. Something that has surprised me about living with an illness is: people's reactions, especially my own family. I've been amazed at who has stood by me and who has failed me. 

28. The nicest thing someone did for me when I wasn’t feeling well was: surprise me with assistance and recently, I received a most unexpected gift by an unexpected person.


29. I’m involved with Invisible Illness Week because: Invisible is not good enough; all invisible illnesses, common and rare, need to become visible. 

 30. The fact that you read this list makes me feel: encouraged that you took the time to read and to think about the topic.

5 comments:

  1. Hugs, Bea. It's got to be very frustrating for you! I promise to only send you non-spiced foods. :P

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  2. I don't think I realized how your allergies keep you home. I know several people with severe food allergies, but they are all young, so having them be home more is normal.
    Thanks for posting this. Knowing someone personally who deals with an invisible illness goes a long way toward making these issues real and making me, at least, look at simple steps that can help.

    ReplyDelete
  3. Thanks Kate and Jax. :)

    Jax, it was your tweet of someone els's post on this that got me thinking about it. Most of it is stuff I have thought before but didn't have a good way to express. So thanks! :)

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  4. Hi Bea! It's blue moon from Kelley's forum. I spotted your twitter handle in an RT from Net
    Galley and thought, "that couldn't possibly be...." The internet is a very small world.

    I didn't know there was an Invisible Illness week. I have Crohn's and Fibro, so in my own way I'm right there with you. I hope you're feeling OK. I've heard a lot of people talking about problems with fall allergies already.

    I moved in with my parents in Bradford about two weeks ago, and I'll be here until the end of October when the whole traveling circus picks up and moves to Indiana. I'd love to get together for coffee or something if we can work it out. (Well, I can't do coffee with my Crohn's, but it just sounds weird to say "let's meet in public for a glass of water!")

    ReplyDelete
  5. Becky, I think I read your blog! Did you follow me on Twitter? Cuz 2 different Becky's just started following me and I looked at both profile's. hee hee, it really is a small world after all.

    I'll PM you at KA and maybe we can get together. :)

    ReplyDelete

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