30 Things About My Invisible Illness You May Not Know – Reposted by Cara Potapshyn Meyers

It has been a while since I gave our readers the “Lyme Update.” Here I am, six months after being diagnosed, still taking antibiotics, when the initial prognosis was to take antibiotics for a maximum of six months. As time and bloodwork testing went on, we found that I have a second, very rare, very serious Lyme infection. Due to this second infection, I think I will be closer to the one-year plan. But for now, I still take one day at a time.

I found this blog post through a concerned friend. I felt it necessary to try to explain to the world that having an “invisible illness” brings with it many more challenges than with an illness you can actually see. There is still so much even my closest friends and family do not know. That unfortunately is the “nature of the beast” with chronic invisible illness. Here is my version of the original post. The website for the original is at the bottom of this blog.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Many people think I only have Lyme Disease, but as I usually say “Lyme never come to the party alone.” I also live with Fibromyalgia, Adrenal Insufficiency, Hypothyroidism and a few other nuisance medical conditions.

2. I was diagnosed with it in the year: I was diagnosed in 2012, I was one of the truly lucky ones. Most people are diagnosed many years later, when their condition has entered the moderate to severe stage. I feel blessed.

3. I have had symptoms since: Late January, 2013. I was always tired, felt like I had the flu – everyday, unexplainable fevers, aches and pains etc. I was literally house-bound for several months. I couldn’t even drive.

4. The biggest adjustment I’ve had to make is: Learning to say “no.” Learning that I do have limits and I have to take care of myself. I had six errands/appointments to go to the other day. After the first three long ones, my body was wiped. I knew I couldn’t continue. I had to cancel my last three appointments literally at the last minute. I am grateful that these providers know I have this condition and try to understand. If you don’t have your health, nothing else matters.

5. Most people assume: That I am a happy, upbeat person because of the writings and advice on my blogs. I am that person but that is only one layer. I do hurt, I do cry and I do have hard times when dealing with my illness. I am human and have a full range of emotions. I think living with any chronic illness comes with highs and lows, days when you are strong, and days when you need strength. The day I could only do three errands, I got home around 3 pm, laid down on my bed around 4 pm, and slept like a log until 8 pm. Then I went back to sleep at 11pm. I must listen to my body.

6. The hardest part about mornings are: Just getting moving at first. I feel like “the tin man” from The Wizard of Oz. I am achy and very tired. It would be easy to just go back to bed, but I have a beautiful almost 10-year-old that makes it impossible. I love sharing mornings with him and he is my motivation. I also have to remind myself that once I get moving, even a little bit, the pain and stiffness will get better.

7. My favorite guilty pleasure is: Starbucks! Even though I am trying to eat well, take massive herbs and supplements and do everything possible to optimize my body’s condition, nothing beats a cold Frappacino in the middle of the day! Whipped cream and all!

8. A gadget I couldn’t live without is: I could never live without my microwave heating pads. The moist heat is perfect for my sore muscles and it is quick and easy. I love gadgets of all kinds but I guess I am answering as far as health is concerned. But my favorite overall gadget is my iPhone. It keeps me connected to the community and my family and friends even if I am stuck inside, on the couch, actually running errands, or in bed! Yay to unlimited minutes and texting!!

9. The hardest part about nights are: Getting my body to wind down and relax. It is hard to not want to try and stay up late and get “more accomplished”. It is so easy to always feel so behind when you have a chronic illness and can’t do it all. I have learned though that if I use up all my “spoons” today (see original author’s website for definition of ‘spoons’), trying to get everything done with every last drop of energy that I have, then I will be paying for it tomorrow. So learning when enough is enough and when it is time to just go to bed has been the hardest part of my nights.

10. Each day I take: 42 pills & vitamins/herbs (No comments, please). And, yes, I counted them.

11. Regarding alternative treatments I: I believe that anything that helps you feel good and doesn’t hurt yourself or others is ok. I believe you need to make smart educated decisions, but in the end the decisions are yours to make. I also believe that in the end there are so many factors that go into our healthcare management why would we shut out any possibilities?

12. If I had to choose between an invisible illness or visible I would choose: I would choose to have an invisible illness. I am used to my illness being invisible, I have become good at advocating for myself and I have learned to cherish the days were my illness isn’t as obvious. If I am feeling well my health does not need to be everyone’s business, the down side is of course that when I am in pain, or fatigue etc I do need to ask for help which can be the hardest thing in the world.

13. Regarding working and career: When your passion becomes your purpose there is nothing you can’t do. We might think we choose our work, or career but I do believe that God knows what is best for us and finds a way to put us in that path. What I wanted to be, would have never been right and what I have become is more than perfect.

14. People would be surprised to know: That I actually can be very shy. I know it is hard to believe since I put my life out on the internet every week! I am also not as “strong” as people unanimously seem to believe.

15. The hardest thing to accept about my new reality has been: The unknown. Not knowing when my next flare might be, or not knowing if the next cold can become a nightmare illness. Not knowing how long this recuperation will last. Will I feel good at some point in time? Not being being able to make plans. Not having enough energy to achieve all the dreams my crazy heart has dreamt up.

16. Something I never thought I could do with my illness that I did was: I never thought I could help my own life with Lyme let alone many others. I am honored, humbled and rejuvenated whenever someone likes something I wrote, claps for something I say, passes on a suggestion, or even “likes” a comment I make on one of the Lyme support groups on Facebook. I truly spend much of my time trying to figure out what to do next, what to do after my diagnosis. What do you do when your career, your identity is ripped away from you? I knew I could talk, I knew I loved to write and I knew I was passionate about making life just a little bit better. Then I was diagnosed. There was no big plan, there was no vision, just the desire for no one else to walk the path of living with an invisible illness alone. 

17. The commercials about my illness: There are no commercials for Lyme (my primary illness). It is still a very unknown and misunderstood illness. The journey of awareness has just begun.

18. Something I really miss doing since I was diagnosed is: Being active and enjoying time spent with my son. I climbed a rock wall just two weeks before being diagnosed. Now the thought of packing up the car to sit in a lounge chair at our local pool is a tremendous effort.

19. It was really hard to have to give up: My independence. I am a very independent spirit. I am strong willed, maybe sometimes too strong. It has been very hard to learn to reach out and ask for help. There have been times when the help needed was obvious but other times the help was not so obvious and I had to swallow my pride. I actually asked once of the nurses to sit through an IV treatment with me just because I didn’t know how I would react or what to expect. Everyone assumes I am so strong that I can handle anything, but I know now that best choice is the hardest one. For me, the best choice has been learning to let my ego go, live honestly and to ask for help.

20. A new hobby I have taken up since my diagnosis is: I actually haven’t taken up any exciting new hobbies that I can think of right now. I would LOVE to learn more about photography since I love taking photos. I have also learned to knit and crochet. I also took up making bracelets since I became tired of spending $25 on ones I could make for myself for $5.

21. If I could have one day of feeling normal again I would: I would love to be fit enough to really rock climb! Like a real rock made from the real earth! One of my secret little dreams. Maybe I should start with a walk around the block?

22. My illness has taught me: Who my real friends and family are. The people who support you every day, for better or for worse…. in sickness and in health. Those are the people who truly love you. If you want to know who your real friends and family are, get sick and see who stays.

23. Want to know a secret? One thing people say that gets under my skin is: I hate when people say “Oh, I know what you are going through”, or “I know how you feel”. The sentence usually starts with those words and ends with a tale of a broken leg, or a bad back, or a particular horrible flu. Try having them all at once, every day, then tell me you know how I feel.

24. But I love it when people: I love when people offer to help without asking. I love when friends and family offer real help, flowers are sweet but they die quick. Some of the best gifts, or help have been: when my cleaning lady has done my laundry without asking, when friends have driven me to doctors appointments or to the train station, or when friends have bought food for me while they were out. I have also had friends give me restaurant take out flyers. Anything that helps save a bit of energy and gives me more time and energy to focus on my health and my son is the best gift anyone can give.

25. My favorite motto, scripture, quote that gets me through tough times is: “God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.”

26. When someone is diagnosed I’d like to tell them: It will be hard, but it will be ok. I tell them that they know their bodies best, they need to be their own advocates, and they need to be strong in spirit even if their bodies are weak.

27. Something that has surprised me about living with an illness is: I have actually watched medical advances happen in my short time with Lyme. The life of a lyme patient has drastically changed over time. There is still so much work to be done, but it has been surprising to actually see and live these medical advancements and breakthroughs. I am currently on an “off-label” antibiotic that wasn’t available six months ago! I can actually feel it working like crazy!

28. The nicest thing someone did for me when I wasn’t feeling well was: Having a friend come over, make dinner for my son and me, and fix my computer along with my printer! I am forever grateful to her!

29. I want to be involved with Invisible Illness Week this year because: If all of us do our part, write a blog post, re tweet this post, share on facebook, pass on info.. whatever. Each step is a step closer to awareness, understanding and acceptance. It is the easiest thing we can do, but collectively we will make a difference.

30. The fact that you read this list makes me feel: Loved. Grateful. Hopeful.

Original Author: Christine Miserandino

Christine Miserandino has Lupus and is the founder of butyoudontlooksick.com. She has won numerous awards for her writing. She has been featured in newspapers, magazines and television. She is a guest expert and community TV host for WebMD.com. She prides herself on being a patient advocate, but her favorite role is that of a mommy. You can find her at @bydls on twitter or on facebook.

• See more at: http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/30_things/#sthash.iiYjajHR.dpuf

Addendum: New books, to be titled, “Not Your Mother’s Book…On Moms” and “Not Your Mother’s Book…On Families” are due out in September and March 2014, respectively. The authors are still accepting story submissions for both books. If any of our readers would like to submit stories for consideration, here is the link to the submission guidelines: http://www.publishingsyndicate.com/publishing_syndicate/submissions/nymb_submit_guidelines.html.  The deadline to submit is August 1, 2013, but we urge you to send in stories ASAP, which will better your chances of being published. 

Tags: butyoudontlooksick.com, Cara Potapshyn Meyers, Christine Miserandino, invisible illness, Lupus, Lyme Disease