Nickie Coby (puppybraille) wrote,
Nickie Coby

30 Things About My Invisible Illness You May Not Know

In my travels in Twitter land, I foundout about this meme for Invisible Illness Awareness Week. I thought it might be a nice way for me to catch new readers up on what's been going on and also help the long faithful readers to remember some of the stuff that isn't easy to remember. If you have an invisible illness, you can do this too. Look at the instructions further down.

  1. The illness I live with is: Complex Regional Pain Syndrome's the current real name, but a lot of us still call it Reflex Sympathetic Dystrophy or RSD, RSDS or CRPS. Any combination will do, especially when you decide to confuse the professors and relatives (smile).

  2. I was diagnosed with it in the year: of late 2003 tentatively and definitely in 2005 and it was confirmed again in 2009.

  3. But I had symptoms since: February of 2003 when I incurred some unknown small injury. Maybe it was dancing or maybe I tripped off a curb somewhere, we'll never know for sure.

  4. The biggest adjustment I’ve had to make is: Accepting that I can't live like my college peers do. Using a walker is hard because they're not designed for blind people to use easily and I know Julio is confused. I guess when it comes down to it, the biggest adjustment for me has been that I am considered severely impaired right now and that is hard to cope with. I still want to cry just thinking about that comment on my medical reports and charts.

  5. Most people assume: that my RSD has to be easier than living with blindness. When a guest comes to our church, full of the joy of our faith, there are times when they decide that they need to pray for my vision "right now,, right here". They don't ask about my walker, the tension I carry. To them, blindness is horrible and they wouldn't want to live with it. That's how I feel about my pain, but not my blindness.

  6. The hardest part about mornings are: Waking up in so much pain and stiffness. Sometimes I have a little hope that things won't be that bad, but that feeling of hope's crushed like a bug as I move my left foot ever so gently toward the flore.

  7. My favorite medical TV show is: Don't have one yet.

  8. A gadget I couldn’t live without is: My Victor Reader Stream: When I'm in pain or fatigued and need to rest in bed or do my relaxation, biofeedback, meditation or guided imagery, I have reading material, music, guided imagery and other recordings to help me along. It's a really small device so it's easy to have in bed with me. My runner up is my MSI Wind because it's small and light and works in bed and is light enough when I'm sitting that I can hold it mostly on my right leg.

  9. The hardest part about nights are: the pain and anxiety which seem to get magnified in the night. Even worse, there is little I can do about it and I'm not comfortable reaching out late at night.
  10. >
  11. Each day I take __ pills & vitamins. (No comments, please) Let's just say it's a lot and leave it at that.

  12. Regarding alternative treatments I: use the relaxation/biofeedback/meditation/hypnosis stuff I mentioned above. I also use aromatherapy to help calm my nervous system and make bathing less painful. I sometimes use other herbs and supplements for a variety of things. I've recently been learning about the Emotional Freedom Technique from a good friend and am also trying to learn about EMDR's resource tapping and other methods of healing which won't interact with my current allopathic medicines. Oh, and of course, I did Tai Chi Chuan last semester and hope to do that again as I heal. And last, pool therapy is also helpful.

  13. If I had to choose between an invisible illness or visible I would choose: I think I addressed thiis earlier, but my visible blindness is much easier for me than my pain, anxiety, depression and other issues.

  14. Regarding working and career: I'm still a student. I have to admit that I'm very nervous about find a career in social work where I can give my all without making myself sicker.

  15. People would be surprised to know: The things I say to myself and how alone I feel even when I know that others care about and love me. I don't say this much because it doesn't even make sense to me.

  16. The hardest thing to accept about my new reality has been: The pain and the limitations. I once had an amazing adaptive phy-ed teacher who gave me a shirt that said "no boundaries". That shirt meant a lot to me. This boundary is one I can't get over by my self. From a spiritual side, I struggle with this level of illness, pain and struggles because I often feel that a loving God should not allow these things.

  17. Something I never thought I could do with my illness that I did was:
    Write a Book

  18. The commercials about my illness: Don't exist in my area.

  19. Something I really miss doing since I was diagnosed is: Dancing, going to dance class and being able to move freely to the music.

  20. It was really hard to have to give up: My dream of proving that a blind person can be a nurse (people always said it would be impossible but I decided that my health wouldn't allow me to be the kind of nurse I wanted to be). In that same vein, I really struggle to put away my self-criticism and (at times), self-hatred which I learned growing up blind even though I had so many loving people who taught me not to think that way, it often shows up in my chronic illness.

  21. A new hobby I have taken up since my diagnosis is: Other than increasing my writing efforts, I can't really think of a new hobby.

  22. If I could have one day of feeling normal again I would: Get a pedicure, go shopping, give Julio some fun and challenging places to work, go see a movie and either go swimming or out dancing. And, I'd drink coffee without worrying about whether my stomach or heart rate could handle it.

  23. My illness has taught me: A lot of things I wish I could unlearn. But it has also taught me that there are times when I can turn my horrible times into something good for others.

  24. Want to know a secret? One thing people say that gets under my skin is: It doesn't look so bad. What I look like, even what visual signs of RSD I have, doesn't have much if any correlation to the level of pain I'm experiencing.

  25. But I love it when people: are willing to be with me even in the bad times. Some of my closest friends have played on Facebook while sitting with me in a flare, held my hand, hugged me or touched me in appropriate, gentle ways or offered a soft word. When it's not the pain keeping me in my bed but the depression, it always means so much when friends invite me out, even if just to the cafeteria or coffee. Other friends are there when I have an appointment about which I'm worried. Still others call to make me laugh.

  26. My favorite motto, scripture, quote that gets me through tough times is: Any Ronnie Milsap song.

  27. When someone is diagnosed I’d like to tell them: Get good treatment that addresses more than just your medications or nerve blocks. Build a strong network and create a toolbox full of coping skills. The best time to get tackle CRPS is as soon as you can. Make sure to learn all you can, without scaring yourself. Finally, get biofeedback if at all possible, you can learn techniques which can really help with the temperature of your limbs which are affected, and have tools to manage the stress to prevent or decrease flare ups. And last but not least, if you can't handle therapy on land, ask about therapy in a warm therapy pool, it might help you make progress you wouldn't be able to make on land.

  28. Something that has surprised me about living with an illness is: How quickly people look for ways the CRPS is my fault. I think blame is one of those things anyone might use to find some way of handling the fear that they will go through what we do. In most cases, I don't think it's intentional but it can still hurt.

  29. The nicest thing someone did for me when I wasn’t feeling well was: It's honestly hard to rank those types of things. Some friends will help me get food from the cafeteria, others sit with me when the pain's bad, my parents do a lot to help me when they can, my doctors obviously do care about me. There are way way too many to list. Some days, it's just the person who finds me when I've gotten lost using my walker and carefully guides me where I need to go. I'll also never forget a friend who came in the middle of the night and got me out of a stressful situation which was making me ill if she reads this, I think she'll know who she is. Finally, my room mates are often there when I need them and they provide the support which can be so critical at night. One room mate got me to try popcicles which are great for when I'm nauseated from the pain.

  30. I’m involved with Invisible Illness Week because: I always learn so much from the week and I'm enjoying the activities which have already started.

  31. The fact that you read this list makes me feel: Grateful that you took the time and hopeful that it helps you to know me a bit better.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day
free virtual conference with 20 speakers Sept 14-18, 2009 at

And if you want to participate in the meme, visit this URL:

If you fill it out, link back to me or trackback and I'll come read your list!
Tags: biofeedback, blindness, blogs, chronic illness, chronic pain, healing anxiety, health, hope, relaxation, rsd sucks

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