- 5 years ago
- Wedding: June 2013
Hello bees. I posted looking for fellow Chronic Bee’s a while back and was surprised how many of us there were. May is Invisible Awareness Month and in preperation this has been going around to help make them a little more visible. If you’re interested in learning more or finding someone else going through this feel free to read mine. Please do one yourself and send it to friends to help make our pain and life a little more visible. If you’re interested in learning more about me or my illnesses I blog at http://callierivera.weebly.com/
1. The illness I live with is: Fibromyalgia and Ehlers Danlos (EDS)
2. I was diagnosed with it in the year: Fibro- April 2009, EDS- January 2013
3. But I had symptoms since: Fibro- 2008, EDS- 2012, but some symptoms I’ve had my whole life.
4. The biggest adjustment I’ve had to make is: redefining success. I’ve lost several of my abilities and I’m still working on how to remain confident and see my self worth. It’s a work in progress.
5. Most people assume: I’m healthy. I’m still considered very young to have a chronic illness and they don’t seem to understand that short of a miracle, this is never going away. Sure there is an ebb and flow to my daily pain and energy, but it will always be a constant battle.
6. The hardest part about mornings are: and will probably always be getting up. I can sleep 6 hours or 20 hours and never feel rested in the mornings. It’s a huge struggle to wake up and get out of bed with pain soaring and energy levels never properly restored.
7. My favorite medical TV show is: Scrubs
8. A gadget I couldn’t live without is: My phone and my ipad. They contain my life with calendars, lists, internet, reminders, and blogs.
9. The hardest part about nights are: going to sleep. If it’s not my mind racing or anxiety flooding my head it’s pain from my joints that can not be tamed by medicine, stretching, or hot showers.
10. Each day I take: Nothing specifically. I’ve tried many different medications in the past. I’m one of those unlucky few that antidepressants for my Fibro actually made me depressed. If you know me, you know that is not my personality. I love to try to see the positive and it just made me lethargic. I didn’t care about anything and I hated it. I take headache medicine often, and a muscle relaxer when I really need it to help dull the pain so I can fall asleep. Other than that I’m crossing my fingers until August when Alex and I are married and he has a job and insurance.
11. Regarding alternative (Holistic) treatments I: Try to eat healthier, medicinal messages from my wonderful fiance, and talking with others such as a support group.
12. If I had to choose between an invisible illness or visible I would choose: I wouldn’t say either, they both suck for very different reasons.
13. Regarding working and career: I doubt I will ever be able to work a normal 9-5 job. I hope to work at least part time at a job with flexible hours. My dream job is working as a Children’s Minister. I worked as an intern in the Children’s department of my church for two summers. It was amazing and I ended up working full time because I loved it so much. I missed maybe two things the entire summer due to illness because I loved what I was doing so much I didn’t even focus on the pain.
14. People would be surprised to know: How sick I really am. It’s hard to grasp the severity from an outsiders perspective. I try to help by blogging. Which hopefully after the wedding will be more consistent.
15. The hardest thing to accept about my new reality has been: If it really came down to it, I still couldn’t push through it. My body has limits and despite at times wanting to push through the pain or fatigue even for something that I love my body simply can’t and won’t. It’s a very unique emotion to feel like your body is betraying you and that you don’t have control even over your own body. It’s iconically the one thing in this world we are suppose to have control over.
16. Something I never thought I could do with my illness that I did was: I ran a 5K and although I will probably never do another one and it wiped me out for over a month it was the most amazing thing. It was something I never believed I could do even healthy and I am still amazed that I was able to finish it.
17. The commercials about my illness: Fibro commercials are sparse and feature mainly the elderly. EDS commercials are non existent in the US.
18. Something I really miss doing since I was diagnosed is: having friendships that include seeing each other often, late nights, and not having to cancel plans.
19. It was really hard to have to give up: my music education major. I have such a passion for music and kids. Although I know I will find a way to still teach music, I wish I could have gotten the opportunity to do it daily for the rest of my life.
20. A new hobby I have taken up since my diagnosis is: religious studies. I love learning about what people believe and why.
21. If I could have one day of feeling normal again I would: As silly and mundane as it sounds… have a normal day. I would want to get up at 6 am, make it to class without a struggle, be able to learn without struggling to listen, laugh with friends in the hall, sing through a choir rehearsal, and maybe have a late night with friends getting ice cream. I miss the “normal” days, and I would give anything to be able to do those normal things again with energy and without pain.
22. My illness has taught me: To appreciate the little things. The rare occasion I can walk without thinking about pain. The energy to cook a full dinner. The ability to attend class. The privilege of feeling successful. The energy to get ready and dress up.
23. Want to know a secret? One thing people say that gets under my skin is: “Oh, I know what you mean, I (Insert story that sounds nothing like what I’m going through)” As humans we tend to think people want to know they’re not alone so we try to relate it to something in our lives. We share how we understand what they are going through by trying to relate and sharing a “similar” story. I’m guilty of this as well. But on the receiving end when we’re talking about chronic pain, it’s hard to feel that you’re not belittling it. No, it’s not like when you got the flu 6 years ago. Because after a week or so you were better. We have to live life with the “flu” from now on. And that is a different type of pain. It’s a pain that isn’t felt as a sharp stab, or a physical ache. It’s an emotional never ending battle. We have to rationalize that this will forever be our life. Sure we may find relief here and there but this will always be something we have to battle. This realization sometimes can be much more painful than a knee dislocation or “hit by a truck” exhaustion, it’s a life changing and life long new reality.
24. But I love it when people: Ask questions and try to learn more. It’s a difficult question to ask. I know you don’t want to offend me, and frankly I might act offended and I’m sorry, but in the end it makes the world more aware and betters all our lives. All we want is people to try to learn, to listen, and to give support. We want understanding not sympathy.
25. My favorite quote that gets me through tough times is: “Have I not commanded you? Be strong and courageous. Do not be frightened or dismayed, for the Lord your God is with you wherever you go.” Joshua 1:9
26. When someone is diagnosed I’d like to tell them: You’re not alone, there are others with this disease and we all are here to help, listen, and support.
27. Something that has surprised me about living with an illness is: How cookie cutter this world is. We’re taught growing up we’re all special and we all can contribute to this world in our own unique ways. But despite all the loving encouragement, it’s difficult to accommodate or interact with those who don’t fit the mold. We tend to shy away and live in our comfortable bubble of predictability until something happens in our lives that toss us into the pile of “misfit toys”. It’s amazing the number of people who couldn’t be bothered with trying to understand or work with you to help you reach a goal despite something. We all like a good underdog story, but we don’t really go out of our way to help the underdog. It’s some how more meaningful if they do it on their own and rise above it despite the odds. This is a sad misfortune that only leads to a few great stories and a large number of lost souls who simply didn’t have the resources, ability, or energy on their own and were left to drown by those who couldn’t be bothered to help out a fellow human being.
28. The nicest thing someone did for me when I wasn’t feeling well was: Leave me comments of encouragement, especially on my blog. It’s nice to know people are listening and learning. It’s nice to know I’m making some sort of difference. That despite this illness I’m bettering the world in some way.
29. I’m involved with Invisible Illness Awareness because: Awareness will not only better my quality of life, it will better yours. You can learn from our pains. You can learn to enjoy life, health, and ability. You can learn that we all have something that affects us and we all have hardships. Every encounter in your life is facing a huge battle be it visible or invisible, emotional or physical. We all are going through something and we all deserve a break.
30. The fact that you read this list makes me feel: heard.