1. The illness I live with is:LYME DISEASE AND BABESIOSIS
2. I was diagnosed with it in the year: 2015
3. But I had symptoms since: 2013
4. The biggest adjustment I’ve had to make is: ACCEPTING I CANNOT DO ALL THE THINGS I WANT TO DO AND SPENDING MOST OF MY DAYS TRYING TO TAKE CARE OF MYSELF SO I CAN HEAL. I DON'T ALWAYS FEEL NOT VERY PRODUCTIVE, AND THAT'S FRUSTRATING FOR SOMEONE WHO USED TO GET A LOT DONE.
5. Most people assume: LYME DISEASE IS NO BIG DEAL. EASILY CURED.
6. The hardest part about mornings are: GETTING OUT OF BED. MY ENTIRE BODY IS STIFF AND HURTS AND IT TAKES A LOT OF ENERGY TO GET GOING.
7. My favorite medical TV show is: ER
8. A gadget I couldn’t live without is: MY LAPTOP
9. The hardest part about nights are: INSOMNIA. NOT BEING ABLE TO GET COMFORTABLE BECAUSE OF PAIN. AND KNOWING THAT EVEN IF I DO GET A GOOD NIGHT'S SLEEP, I'M STILL GOING TO FEEL EXHAUSTED IN THE MORNING.
10. Each day I take __ pills & vitamins. (No comments, please) BETWEEN TEN AND TWENTY. SOMETIMES MORE DEPENDING ON LEVELS OF PAIN AND WHERE I AM IN MY TREATMENT.
11. Regarding alternative treatments I: MY FIRST LINE OF DEFENSE IS USUALLY SOMETHING ALTERNATIVE AND NATURAL. A HOT SHOWER. AN ICE PACK. MELT CLASS. CHIROPRACTIC ADJUSTMENTS, MASSAGE THERAPY. HOMEOPATHIC TREATMENTS. SOMETIMES THESE ARE NOT ENOUGH. I'M VERY SENSITIVE SO I DON'T LIKE USING PRESCRIPTION MEDS IF I DON'T HAVE TO. SOME DAYS I DON'T HAVE TO. MOST WEEKS I DO. I ONLY HAD TWO DAYS THIS MONTH WHERE I FELT 'GOOD'.
12. If I had to choose between an invisible illness or visible I would choose: WHILE I WISH MY DOCTORS WERE MORE EDUCATED WHEN IT COMES TO INVISIBLE ILLNESSES AND I WISH PEOPLE WERE MORE UNDERSTANDING AND COMPASSIONATE, I'D STILL CHOOSE AN INVISIBLE ILLNESS OVER A VISIBLE ILLNESS BECAUSE I'D RATHER NOT BE DEFINED BY MY ILLNESS. SINCE I DON'T 'LOOK SICK' PEOPLE ASSUME I'M NOT SICK. SOMETIMES I CAN FAKE IT PRETTY WELL. I THINK OUR ILLNESSES CAN BECOME THEIR OWN PRISON OR TRAP. IF ALL OTHERS SEE WHEN THEY LOOK AT US IS OUR ILLNESS, THEN THEY STOP SEEING OUR TRUE POTENTIAL OR WHO WE TRULY ARE. WHEN OTHERS REACT TO US IN THIS WAY, THEN IT'S EASIER FOR US TO ACCEPT OUR LIMITATIONS, RATHER THAN FOCUSING ON WHAT WE CAN DO OR WHAT WE CAN ENJOY IN LIFE.
13. Regarding working and career: I USED TO WORK ON MANY CREATIVE PROJECTS. NOW I SPEND MOST DAYS THINKING ABOUT PROJECTS I'D LIKE TO GET BACK TO ONCE I FEEL UP TO IT. I HAVE SOME GOOD DAYS. BUT MY WORK IS OFTEN PUT ON HOLD FOR THE PAIN. I AM STILL ABLE TO GET WORK DONE, BUT IT REQUIRES QUITE A BIT OF DETERMINATION AND GRIT. LUCKILY, I DON'T GIVE UP EASILY.
14. People would be surprised to know: CHRONIC ILLNESS AND PAIN DRAINS YOU NOT JUST PHYSICALLY, BUT EMOTIONALLY AND MENTALLY AS WELL. I ALWAYS THOUGHT I'D BE FINE AS LONG AS I STILL HAD USE OF MY BRAIN BECAUSE I ALWAYS CONSIDERED MYSELF A CEREBRAL PERSON. TURNS OUT, A SICK BODY TAKES A TOLL ON YOUR ENTIRE BEING. I TRY TO STAY AS POSITIVE AS I CAN, BUT THAT ISN'T EASY WHEN EACH DAY MY BODY IS WRACKED WITH PAIN. IT IS EASY TO GET DISCOURAGED, ESPECIALLY IF YOU DON'T HAVE A STRONG SUPPORT SYSTEM OR PERSONAL TOOLS TO HELP YOU WORK THROUGH THESE FRUSTRATIONS.
15. The hardest thing to accept about my new reality has been: LOSING THE THINGS THAT ONCE DEFINED ME, AND THE THINGS THAT USED TO BRING ME JOY. AND FEELING TRAPPED INSIDE A BODY THAT WON'T DO WHAT I WANT IT TO DO.
16. Something I never thought I could do with my illness that I did was: EVEN THOUGH I FEEL SICK AND TIRED ALMOST EVERY DAY, IT'S JUST NOT POSSIBLE TO STAY IN BED EVERY DAY OF YOUR LIFE. THAT'S NOT REALLY LIVING. SO I'M SURPRISED HOW MUCH I HAVE BEEN ABLE TO DO AND HOW MUCH I HAVE ACHIEVED, DESPITE BEING IN A FAIR AMOUNT OF PAIN FOR OVER TWO YEAR, I STILL COMPLETED MAJOR HOME RENOVATION PROJECTS, GOT IN SOME SUBSTANTIAL WRITING, TRAVELED A BIT, ADOPTED AND TRAINED A NEW PUPPY, TOOK UP A NEW HOBBY (KNITTING) AND ENJOYED DAILY LIFE WITH MY FAMILY.
17. The commercials about my illness: THERE ARE NO COMMERCIALS ABOUT LYME, BECAUSE THERE IS NO QUICK FIX AND THEREFORE, NO PILLS FOR PHARMACEUTICAL COMPANIES TO MARKET.
18. Something I really miss doing since I was diagnosed is: HAVING A FULL DAY OF ACTIVITIES. OR JUST HAVING A DAY WHERE ONE ACTIVITY/TASK DOESN'T EXHAUST ME.
19. It was really hard to have to give up: EXERCISE
20. A new hobby I have taken up since my diagnosis is: KNITTING
21. If I could have one day of feeling normal again I would: PROBABLY JUMP RIGHT BACK INTO MY LIFE WHERE I LEFT OFF AND MAKE THE MOST OF IT. I'D FINALLY FINISH THE REWRITE ON MY NOVEL.
22. My illness has taught me: I AM STRONGER THAN I THINK I AM. NO MATTER HOW MUCH THE DARKNESS HAS THREATENED TO OVERTAKE ME, I ALWAYS FIND THE LIGHT. I AM A SURVIVOR.
23. Want to know a secret? One thing people say that gets under my skin is: ACTUALLY NOTHING. I HATE IT MOST WHEN PEOPLE SAY ABSOLUTELY NOTHING OR WHEN I GET BLANK STARES AND NO RESPONSE WHEN I MENTION I HAVE LYME. IT ESPECIALLY ANNOYS ME WHEN I GET THIS LOOK FROM MY DOCTOR OR OTHERS CLOSE TO ME. IT MAKES ME FEEL AS IF THEY DON'T TAKE ME SERIOUSLY OR DON'T BELIEVE ME. I KNOW PEOPLE OFTEN DON'T KNOW WHAT TO SAY. BUT SOMETIMES WE ARE JUST LOOKING FOR A LITTLE ACKNOWLEDGEMENT. SIMPLY SAY, "I'M SORRY YOU HAVE TO GO THROUGH THIS."
24. But I love it when people: SHOW COMPASSION AND ASK ME HOW I AM FEELING, RATHER THAN HOW I AM DOING. TRUTH IS IN GENERAL I'M NOT DOING WELL, BUT I KNOW YOU DON'T WANT TO HEAR EVERY DETAIL OF MY PAIN. SOMETIMES I DO WANT TO TALK ABOUT HOW BEING SICK MAKES ME FEEL. TALKING ABOUT IT HELPS ME PROCESS WHAT I AM GOING THROUGH AND MAKE PEACE WITH WHERE I AM.
25. My favorite motto, scripture, quote that gets me through tough times is: I GUESS IT COMES DOWN TO A SIMPLE CHOICE. GET BUSY LIVING, OR GET BUSY DYING. (The Shawshank Redemption)
26. When someone is diagnosed I’d like to tell them: I'M HERE FOR YOU IF AND WHEN YOU NEED SOMEONE TO TALK. KNOW THAT THIS IS GOING TO BE A TOUGH ROAD AHEAD, BUT DO WHAT MAKES YOU FEEL GOOD AND TRY TO STAY PRESENT. DON'T GIVE INTO THE DARKNESS. YOU ARE MORE THAN JUST YOUR ILLNESS.
27. Something that has surprised me about living with an illness is:LEARNING IT WAS OKAY TO GIVE UP THE BUSYNESS OF MODERN LIVING AND JUST FOCUS ON GETTING WELL. IT'S NOT FUN AND CAN GET BORING, AND SOMETIMES THE DAYS ARE INTERMINABLY LONG. BUT I'M LEARNING ABOUT ME, AND FIGURING OUT WHAT'S TRULY ESSENTIAL TO MY HAPPINESS. SAVE YOUR ENERGY FOR THE IMPORTANT THINGS -- THE THINGS THAT TRULY MATTER, LIKE SPENDING TIME WITH YOUR FAMILY.
28. The nicest thing someone did for me when I wasn’t feeling well was: THEY LISTENED TO ME AND ACKNOWLEDGED THAT I HAD THE RIGHT TO FEEL ANGRY/SAD ABOUT MY ILLNESS.
29. I’m involved with Invisible Illness Week because: I AM NOT ALONE. MILLIONS OF PEOPLE SUFFER FROM PAIN AND CHRONIC ILLNESS. AND YET FOR THE MOST PART THEIR STRUGGLES AND THEIR FIGHTS GOES UNRECOGNIZED. AS LONG AS THESE ILLNESSES REMAIN INVISIBLE, SO WILL THE CURES.
30. The fact that you read this list makes me feel: GRATEFUL. THANK YOU FOR TAKING THE TIME TO LEARN ABOUT MY EXPERIENCE. HOPEFULLY, SOMETHING I'VE SHARED WILL HELP YOU BETTER UNDERSTAND SOMEONE IN YOUR LIFE WHO IS SUFFERING FROM CHRONIC ILLNESS.
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