For the past couple of days I have been extremely, more than usual frustrated with my illness. For the first time really I have become very frustrated (to the point of hysterical breakdown) with the fact that I can't eat anything I want to. I think it is because I know live with my mom and sis so there is tons of gluten in the house. When I lived on my own it wasn't as big an issue because I just didn't buy glutenous foods...now it's everywhere, but that isn't there fault and it's not fair for me to expect them to not have it in the house...it's just bothering me this week for some reason. Also, I have been extremely irritable and taking it out on my family and that makes me sad inside. The pain is getting worse because of the extreme coldness here (night before last the real feel was negative 3 degrees here, in the days the high has been about 24 with a real feel of 17 or so). Right now I am up because my joints, all of them, are on fire, so much so that I am literally sweating because I hurt so bad. So I decided to google quotes about invisible illnesses to try to inspire and motivate me that it will all be ok and found this neato little survey, so I filled it out so that you guys can learn my innermost thoughts about my illness...and I have more thoughts but these are the most of them. I should also point out that I took 2 pain pills tonight because I hurt so bad and I usually don't even take tylenol so I apologize if there is anything offensive and/or non coherent in it. so here you go, enjoy. :)
29 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Celiac/Ulcerative Colitis/and possibly Dysautonomia or Fibromyalgia or some other nervous system disorder
2. I was diagnosed with it in the year: 2009 and will be 2012 for whatever the nervous system thing i have is
3. But I had symptoms since: I was a junior in high school
4. The biggest adjustment I’ve had to make is: learning that on days I have can't get out of bed that is ok, eating only gluten free food, not being able to be as independent, always planning my life around where the nearest bathroom is
5. Most people assume: I am healthy because, I “don’t look sick” and that I am exaggerating my symptoms there is no way I could be this sick all the time.
6. The hardest part about mornings are: getting out of bed, my joints are in so much pain all the time it is very hard to get moving, especially in the cold. I also can no longer take a shower standing up because it takes to much energy and I will pass out so I use a shower stool to sit on to take showers. Yes, I’m 26 and I have to use a shower stool.
7. My favorite medical TV show is: I love most of them, I especially like Grey’s Anatomy, I also love to watch Discovery Health Channel and watch all the mystery diagnosis shows hoping I will see myself on there one day and know what I have finally!
8. A gadget I couldn’t live without is: my back massager/heater for my chair, a heating pad, and my cell phone/laptop so I can stay connected on my bad days!
9. The hardest part about nights are: sleeping-either can’t sleep because I’m in too much pain or can’t stay awake. I also get really achey muscles starting around 8 at night and it makes me very irritable. I also get very bad night sweats and wake up in a pool of sweat several times a night and in the mornings I can usually literally wring my clothes out, especially in the summer. I also have to frequently go to the bathroom multiple times in the middle of the night (although that has diminished a lot:) )
10. Each day I take 14 pills & vitamins. Plus, I get IV infusions every 8 weeks of another medication. But I thank God, it is only 14 pills a day, because I used to take 24 pills a day.
11. Regarding alternative treatments I: love them, I could not live without chiropractic adjustments and massage. I also used to get acupuncture in Salisbury and that helped a lot too, but haven’t found that up here in Indiana yet. I am willing to try anything that is not a pill or something not natural because I am not a medication lover.
12. If I had to choose between an invisible illness or visible I would choose: visible-people would judge me less I think…but if it was visible then people would judge based on looks, I don’t think there is a good answer to this question.
13. Regarding working and career: I loved my job as a severe and profound teacher. It did not love me. I am no longer allowed to work and am in the process of applying for disability. The people who abuse the system though have made it very hard for people who actually need it to get it, so we’ll see. I am going to try to become a dietitian and see if I can do that eventually.
14. People would be surprised to know: I, no matter how much I complain on facebook, or to my mom, or friends, and no matter how much I hurt and how many times I go to the hospital and take pills and whatever else am very happy that I have my diseases and know what they are. The way I see it, God knows what He’s doing and He is trusting me with these diseases. He is trusting me to have these diseases and take care of the body He entrusted me with to try and take care of it as long as I can. I know that I have these illnesses for a reason and I hope that I am fulfilling my ‘purpose’ of having them every day.
15. The hardest thing to accept about my new reality has been: I will not ever be all the way better, I will never be able to do as much as people my age (or even way older can do). I have to slow down and take it easy, which sometimes means not even doing anything that day at all.
16. Something I never thought I could do with my illness that I did was: go back to school (well I haven’t done it yet, but I start next week)
17. The commercials about my illness: make me laugh…and make me feel sad that there are enough people that have my illnesses that there have to be commercials because I wouldn’t wish this crap on my worst enemy.
18. Something I really miss doing since I was diagnosed is: eating out with friends anywhere I want to, being able to be spontaneous and have energy to have fun.
19. It was really hard to have to give up: my job, running
20. A new hobby I have taken up since my diagnosis is: couponing, cooking, reading, arts and crafts
21. If I could have one day of feeling normal again I would: run a marathon, take a hike, eat anything I wanted, and just be spontaneous
22. My illness has taught me: that everyone has stuff, and that some people have harder stuff, but without stuff we don’t know what we are capable of despite bad circumstances
23. Want to know a secret? One thing people say that gets under my skin is: You look so good today—of course I look good, you can’t see my disease, the days I “look good” are usually the days I feel the worst. If I take the time to put on make up and get dressed and try to look cute it’s to cover up the fact that I can barely move and feel horrible because I sometimes think that if I look good then that helps me feel better…or something like that.
24. But I love it when people: talk to me about something other than my illness. I am not my illness. I have real life interests and hobbies and passion about real life things besides my illness. If I want to vent about it please listen and don’t tell me I complain too much, but unless I bring it up please don’t talk to me about it. I am Megan not that girl who is sick.
25. My favorite motto, scripture, quote that gets me through tough times is: I have a couple: “Take pride in how far you have come and have faith in how far you can go” “always remember you are braver than you believe, stronger than you seem and smarter than you think”, “I will never leave you or forsake you”, “You make beautiful things out of us”, “it is well with my soul”, galatians 2:20 and there are tons more scriptures but that is good enough for you to get an idea.
26. When someone is diagnosed I’d like to tell them: be positive, if you aren’t positive, you won’t be able to get out of bed that day. Your physical body has a lot to do with your mental body, you have to be positive.
27. Something that has surprised me about living with an illness is: how judgemental people are and how judgemental I was before being ill. How much people take for granted in their extremely blessed lives.
28. The nicest thing someone did for me when I wasn’t feeling well was: all the people that have visited me in the hospital, cooked for me. One story that sticks out though is an older gentleman that lived across the hall from me in my apartment building that would carry my groceries upstairs for me almost every time he saw me unloading them and after the I almost died hospital visit before my mom could come down brought me a half gallon of milk every day because he knew I couldn’t drive and loved and was craving milk and wanted to check on me and make sure I was ok.
29. The fact that you read this list makes me feel: like you probably know way to much about me right now, but I hope you can understand better what I’m going through and what many others are going through worse than me so that you can educate people about invisible illnesses. I know none of my friends would be judgmental, but there are tons of people that are so maybe YOU can help advocate for us. And maybe you have an invisible illness too (tons of my friends do)…maybe you should fill this in even if just for your eyes. It was kind of cathartic! :)