I am so beyond excited!! I’ve been blogging for like, um, 10 minutes, and I’ve already been nominated for a few awards. How freaking cool is that?? I must thank my new friend Kim at I Tripped Over a Stone for so thoughtfully nominating me for The Disability Award! She has truly been amazing with all of the help she has offered to this very grateful, but also, very newbie blogger. Kim accepted her award last month and you can read about that and her responses here.
Being a newbie, I didn’t really know what blog awards were about so I did a little digging. The Disability Blogger Award (or Kim’s terrific spin, The disAbility Award – I like!) was developed by Georgina who blogs at Chronillicles. Georgina is just 18 years old and living life one day at a time with undiagnosed chronic illness. She wanted to start a blog award for those blogging in the particular niche of Disability, Chronic Illness, Mental Illness and Special Needs so that we can celebrate each other specifically. It’s really a terrific idea and I am honored to a be a part of this continuing celebration of my fellow Spoonies, Zebras, and Chronics! You can read more about Georgina’s development of the award here.
The Official Disability Blogger Award Rules Outlined by Award Creator Georgina:
- Thank your nominator
- Recognise Georgina from Chronillicles as the creator of this award and link her URL: https://www.chronillicles.com
- Use the logo (found below) somewhere in the post
- Answer your nominator’s questions
- Write 5-15 of your own questions – they don’t have to be illness related!
- Nominate 5-15 other disability, chronic illness, mental illness or special needs bloggers
- Comment on each of your nominees’ latest posts to tell them they have been nominated
The Official Disability Blogger Award Logo by Creator Georgina:
Nominator Kim’s Questions:
Kim came up with some terrific questions and I must admit that one of the reasons I hadn’t immediately accepted this award was that I really had to think about my responses. These weren’t easy questions for me.
1. What were the first symptoms you experienced?
I injured my spine with a simple banana-peel type fall causing severe damage to L4/L5 /S1/C3/C4/C5 and the coccyx. The resulting symptoms were agonizing back and neck pain, ice pick headaches, the inability to sit or stand for more than 10-20 minutes without excruciating pain, incontinence, insomnia, hours-long inexplicable body twitches and maddening nerve sensations in my limbs, and my emotions were all over the place. The entire package was debilitating and completely misdiagnosed for the first three years. The headaches weren’t correctly diagnosed for ten years.
2. Name one good thing that has come out of your chronic illness?
I honestly don’t know how to answer this. I could say that I am more compassionate and understanding. Less judgmental. But I’d like to think that would have been a part of my natural evolution as a woman. This one really stumps me. BUT. I will say this. There are times, albeit brief and oh so fleeting, that I can intuit that life may be lived differently than I had otherwise believed. That perhaps, even though my world has shrunk to such minute parameters, peace, contentment, personal growth and awareness, and solid steps toward enlightenment remain a definite possibility.
3. What is one thing that is believed to be accurate about your condition that isn’t?
That I still live a somewhat normal life. I do not. Nothing about this new life resembles my former life. I no longer drive. I no longer work. I don’t run errands. I rarely leave the house and certainly not two days in a row. Getting out of the house is an enormous feat. If My Guy merely mentions the possibility of more than one stop on the rare occasions that we are out and about, I’m immediately in panic mode that it will be too much. I don’t see many people. Most days, I am struggling to just get through. When people do see me, I am generally well groomed and upbeat. I look perfectly normal. Nothing could be farther from the truth. But that’s because I only allow myself to be seen when I’m okay. When I’m not, the only person who sees me is my husband.
4. What is the worst symptom you deal with?
The ice pick headaches caused by occipital neuralgia are beyond hell. There is simply no word to describe them. I had them for ten years before they were properly diagnosed. Weeks and weeks without reprieve, the feeling of an ice pick through the eyeball. Then they’d vanish for a few days and start up all over again. movement of any kind was agony. Now they are mostly managed with injections. How I did not go mad, living for a decade in that state astonishes me. But, thank God, they are now managed. The worst symptom I NOW deal with is that the body pain never ends. One good day out of 30 is not acceptable.
5. What advice would you give to someone who is newly diagnosed?
Number 1. Keep a journal. Nothing is too insignificant to note. Not if you are searching for the proper treatment or there is a possibility of a misdiagnosis. Number 2. Doctors are not infallible nor is every doctor the right fit for you. If something doesn’t feel right, keep asking questions. If you don’t get answers, you’re in the wrong place. Number 3. You MUST be your best advocate. Research your condition. Research treatment plans. Research doctors. And DO NOT BE A VICTIM. YOU ARE IN CHARGE OF YOUR HEALING! This is not the time to be passive. Stand your ground.
6. What is one thing you miss doing before you were diagnosed?
One thing?! EVERYthing! Using my skills, having a career, being a worthwhile partner, socializing, throwing fabulous dinner parties, traveling, going to the theatre, trying new restaurants, spontaneous sex, managing my household, shopping, driving, HAVING FUN, being excited about the future, making plans, KEEPING plans, earning an income, being a participant instead of an observer.
7. What is the one thing that you do that helps the most with your symptoms?
Without medication, life would be unbearable. Without My Guy, it would be impossible.
8. Do you find the word, “disability,” offensive?
Not at all.
9. Since your illness, what is the most important lesson you have learned about yourself?
I have more strength than I ever thought possible. Few people in my life understand the challenges I face; many others do not. Those who do not would be absolutely shocked if they were able to step into my body and live a week with the pain I experience. Hell, I’m shocked! For years after the accident, I thought I was weak, and that weakness prevented me from healing. That belief and disbelief in myself really brought me to my knees. I no longer believe that. I am a very strong woman and I am proud of that strength.
10. Do you celebrate the 4th of July?
If I can. I love to see fireworks and cookouts were always a big deal on the Fourth in my family. My uncle’s birthday was July 2, my dad’s was on the 3rd and my grandfather’s on the 4th. I have SO many happy memories of those celebrations from my youth. For so many years after the accident, I would stand out on our roof-deck after dark on Independence Day, straining my neck to get a glimpse of fireworks in the distance. As silly as it sounds, I can’t tell you how sad I would feel, every bloody July, missing out once again. It was, for me, a very poignant reminder of the passing of time.
My Questions:
- Do you ever struggle getting out of bed in the morning and having to face a new day? If so, how do you manage that?
- Does your diet play a significant role in how you feel or manage your condition? If so, what foods are significant? What foods have you had to erase from your diet?
- What have you learned about yourself that you hope others with chronic illness will learn?
- How do you spend a typical day? What denotes a good day? Will you describe a bad day?
- How do you maintain your voice in the world?
My Nominees:
I realize that awards, while exciting and celebratory and as well-intentioned as they may be, may not always be convenient. No matter. I celebrate you. I find joy in your blog. I admire your fortitude. If you are unable to receive, I completely understand. There is no acceptance limitation. The award is yours at any time. Should you, however, accept this mission, I kindly ask that you honor Georgina’s rules listed above. Cheers!
My nominees are a great group of bloggers who regularly post in this niche and if you haven’t stopped by for a visit recently, now is the perfect time to like a post, say a quick hello, or settle in for a longer reading and commenting session.
And the Disability Blogger Awards go to…drum roll please…
Casey at This Bipolar Brat; Craig at Living in a World of Your Own; Michelle Marie at Fibrochic*; Morgan at Brains & Bodies; and Wendy at Picnic with Ants . You rock!
*For some reason I had trouble with the link to Fibrochic. https://fibrochic.com/