dahlia in my garden: Rio Fuego in Coleus leaves

Tuesday, September 3, 2013

30 Things About My Invisible Illness You May Not Know

(Note: Because of the Labor Day holiday, Tuesday-Newsday will be on hiatus this week.)


As part of Invisible Illness Awareness Week, I've decided to do the "30 Things Meme" which lists 30 questions meant to help people better understand me and my life with chronic illness. Even people who know me very well may not know these things about me. 

I beileved answering these questions would be easy and I would be finished very quickly. However, I was surprised at how deeply I pondered each one, and how thought-provoking the exercise became for me. It really made me marvel at how far I’ve come since this whole roller coaster ride with invisible illness started. I hope that you'll not only learn more about me and EDS-III, but maybe you'll find a connection with your own situation.

I recommend you do the meme, too! All you have to do is go to the 30 Things Meme page, copy the questions, and join in.

Here are my answers:

 ~ 30 Things About My Invisible Illness You May Not Know ~

1. The illness I live with is: believed to be Ehlers-Danlos Syndrome Hypermobility Type III.

2. I was diagnosed with it in the year: My first diagnosis was in 1997.

3. But I had symptoms since: As my illness is genetic, there were symptoms scattered all through my growing up, but no one put the pieces of the genetic puzzle together until I started having severe symptoms in 1996.

4. The biggest adjustment I’ve had to make is: slowing down and not being able to be spontaneous. To do any activity, I have to know all the details and plan everything out in advance.

5. Most people assume: that if I’m not limping, if I’m doing my physical therapy workout in the swimming pool, or if I'm doing something outside my normal routine, that my pain and disability aren’t bothering me at all. I’ve even been asked if I’ve been cured just because I went on a trip. My pain and mobility issues are *always* bothering me, the level simply varies. And there are times that I can hide it better.

6. The hardest part about mornings are: getting out of bed and starting to move around; lately my morning back pain has been really nasty. I can't sleep very many consecutive hours without getting up to relieve the severe build up of pain, so my "mornings" happen about three times in a night. 

7. My favorite medical TV show is: I love *real* medical shows, like the ones on Discovery Fit & Health Channel such as “Trauma in the E.R.” and “Mystery Diagnosis."

8. A gadget I couldn’t live without is: Television. I love watching TV both for the content and as a pain management technique, because it can distract me almost completely. My computer would be a close second.

9. The hardest part about nights are: Once again, pain. Just getting comfortable when I first lie down makes me feel like I’m going to dislocate my shoulder or pop my back when I’m trying to get the covers pulled up and my body situated. 

10. Each day I take: 28 1/2 pills & vitamins. (No comments, please)

11. Regarding alternative treatments: I remember one Thanksgiving where the people seated at the table spent the entire meal discussing what alternative therapies they felt I should do for treatment, and all of them were convinced that they had the real solution. It was THE most uncomfortable and awkward meal I have ever endured. A few weeks later, one relative sent me an alternative remedy she ordered for me - a big jar full of some gloppy smelly stuff which was guaranteed to “fix me up”.  I never used it. I find that regular acupuncture is a great help to me, and I use progressive relaxation and visualization often. Although it’s not something I’d call alternative, my cats bring me a lot of comfort and relaxation. I’ve even written about the scientifically proven benefits that owning a pet can bring to those with chronic illness/pain; you can read it here

My Jaspurr, as a kitten, keeping me 
company while I was working on my blog.

12. If I had to choose between an invisible illness or a visible one I would choose: well, my illness is both, because sometimes I have to use a wheelchair. Having my illness be totally invisible would make it easier to avoid talking about it when I don’t want to. Having a visible illness usually gets two reactions: 1) people either don’t notice me at all or purposely look away, or 2) they feel they have the right to ask questions about it while  sending me looks of pity - which then change to shock when I have to get out of the wheelchair to move because sitting is so painful. Invisible can be tough, but I’d prefer it.

13. Regarding working and career: I see my blog as a vocation, though I have to pace myself very carefully and take frequent breaks so as to not sit too long at the computer. I wish I had more tech knowledge, though, so I could fix up my blog site's appearance and get more up-to-speed with the internet stuff I don't understand.

14. People would be surprised to know: how easily I can get down on myself and feel guilty when my pain or disability prevents me doing something on a rough day. I know when people see me smiling and pushing on through life the best I can, they think I’m strong, but I sometimes feel so insecure and unworthy.

15. The hardest thing to accept about my new reality has been: not being able to be spontaneous. I used to love to travel and go-go-go all day, sight-seeing and exploring a location. Now everything has to be carefully planned out so I can get the most out of my body with the least amount of effort and pain. I would so much like to return to Europe, where we went on our honeymoon, but I just don’t know how we could manage all the details to keep my body at its best so I could enjoy myself more than a few days. I’d especially like to go now, while my wheelchair is a tool and I don't need to use it all the time. 

16. Something I never thought I could do with my illness that I did was: Travel at all. We don’t go often, but as I said in #15 as long as we plan carefully it *is* possible for me to travel. Our last trip to Hawaii was difficult and my pain did flare badly, but I never thought I’d ever be able to get there again after I was diagnosed. It was well-worth all difficulties, and I hope to return again in future.

17. The commercials about my illness: There aren’t any about my specific illness. But medical commercials in general seem almost insulting to me, with the quickly-spoken side effects listed out while the actor seems so carefree and happy.

18. Something I really miss doing since I was diagnosed is: Do I have to pick just one? I used to do ballroom dancing in vintage costume and a lot of historical re-enactments. I would love to be able to dance a Victorian waltz in one of my replica ballgowns, slink into an old-fashioned tango, or do a little swing dancing. I miss it very badly.

19. It was really hard to have to give up: the idea that I couldn’t be the perfect wife complete with a full-time job, who comes home and cooks dinner, is a fully intimate partner, and is always be ready to go out or travel at a moment’s notice and never have to slow down.

20. A new hobby I have taken up since my diagnosis is: well, since moving I’m going to have to re-learn how to garden. I may have a fantastic green thumb in Northern California, but nearly all the plants I brought with me to Vegas have died! Moving to the desert has changed the rules, and it’s going to take a big learning curve for us to find out how to grow the vegetables and flowers we like best. I’m definitely going to miss my big beautiful dahlia blooms, but maybe someday I’ll figure out how to cheat nature and force them to grow out of season here.

21. If I could have one day of feeling normal again I would: I would tell my husband he can choose whether we go biking or kayaking, then we’d go ballroom dancing 'til midnight, then back home for time alone!

22. My illness has taught me: to be more empathetic. It’s impossible to know what someone is feeling, either emotionally or physically, by just looking at them. Just a kind word, a gentle touch, or a moment you give to listen to them can really impact a person who is yearning for empathy.

23. Want to know a secret? One thing people say that gets under my skin is: “You’re so brave.” I’m not brave. I’m just living day to day with my illness, doing the best I can. Bravery is reserved for people like firefighters. 

24. But I love it when people: accept me as I am. I love it when they are able to understand when I can’t attend or I need to leave early or whatever it is I need... and they don’t take it personally. 
(Continued on next page, click below to finish reading)


25. My favorite motto, scripture, quote that gets me through tough times is: I have to choose two quotes, both which I’ve written blog posts on (click to read each one): Be who you are and say what you feel, because those who mind don't matter and those who matter don't mind,” by Dr. Seuss. The other is an adaptation of a quote from author Hunter S. Thompson, Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well-preserved body, but rather to skid in sideways - a wine glass in one hand and chocolate in the other - body thoroughly used up and totally worn-out, screaming at the top of your lungs: ‘Woo Hoo, What a Ride!’

26. When someone is diagnosed I’d like to tell them: You will have limitations that keep you from living the life you had before, but you can still live a joyful life despite your illness. First you must grieve for the life you had, discover what you are capable of now, be willing to accept the challenge of forging a new identity, and then open yourself up and find creative ways to experience life. It will be hard but it is possible. Seek the joy!

27. Something that has surprised me about living with an illness is: how much we take simple tasks for granted. I never imagined how painful and difficult it could be just trying to sit and watch an entire movie without having to relieve my hip/tailbone pain by getting up and down like a jack-in-the-box over and over. Hell, I never knew how painful it could be to raise up my arm to blow dry my hair! When every single movement becomes a complex discussion in your head over what you are able to do and how much it will physically cost you, it’s exhausting. If you are familiar with the Spoon Theory, you'll understand. 

28. The nicest thing someone did for me when I wasn’t feeling well was: drive me to an appointment I desperately needed to keep. I wasn’t able to drive because I was having a severe pain flare, so he drove me the 30 minute trip to my acupuncturist’s office, waited 75 minutes for me to have my treatment, and then drove me back home. I also have to acknowledge all the help and support from my husband and parents.

29. I’m involved with Invisible Illness Week because: I think awareness is so important and validating. I used to be so ashamed of being ill, having chronic pain, and especially my past struggles with depression and anorexia. Hiding it didn’t help me. I found that being open about my issues, educating others, and bringing awareness out into the open helps to foster empathy and caring - on both sides.

30. The fact that you read this list makes me feel: Worthy. You taking the time to actually come to my blog site and read this makes me worthy and hopeful that all the time and effort I put into this chronic pain blog trying to help others is really reaching people. I hope you know that everything I do here is meant to make you feel worthy, too.

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