I originally saw this meme here, and I wanted to participate. Unfortunately I just didn't have time then. Here it is, though:
1. The illness I live with is: The illnesses I have had diagnosed are endometriosis, Fibromyalgia (I didn't believe this for years. I am recently starting to believe the diagnosis was correct), hypothyroidism, and carpel tunnel syndrome. The issues that have gone undiagnosed are what the doctor is calling an "inflammatory disorder of unknown origin, possibly an autoimmune problem." I believe this is probably the Fibromyalgia rearing its ugly head.
2. I was diagnosed with it in the year: Diagnosis ranges from 1993 (carpel tunnel) to 2011. I'm sure I'll get another diagnosis in 2012 when I can finally get insurance and see a specialist.
3. But I had symptoms since: Most of my symptoms started after a bad car accident in 1993. The inflammatory disorder, however, really kicked in at this time last year (2010).
4. The biggest adjustment I’ve had to make is: Since being hospitalized for my symptoms in April I've had to learn that I just can't do everything I want to. All of my energy goes to work on the week days. In the evenings, I'm done. I've had to adjust to not exercising on a regular basis because of the pain and lack of energy.
5. Most people assume: That I am perfectly fine. I hide my pain well, sometimes even from my family. I don't like to complain, and I don't want life to be all about my illness.
6. The hardest part about mornings are: I am to the point where I wake up in pain in the morning and go to sleep with it at night. I hate getting out of bed knowing it's all down hill from there.
7. My favorite medical TV show is: I've given up on medical shows including Dr. Oz. They all contradict each other and themselves in various episodes, and nothing they advise seems to work for me anyway.
8. A gadget I couldn’t live without is: my laptop. This is the best thing my husband has ever encouraged me to get. Not only does it help me with my work, but it has become a lifeline for me. When I was in the hospital, it was the first thing I asked for. When I spent four months on the couch because I was too sick to do anything else I realized I could write to alleviate the mental pain.
9. The hardest part about nights is: being grouchy with my family because of the pain and going to bed right after our daughters do. It seems I have no private time with my husband.
10. Each day I take __ pills & vitamins: 1-3. I have given up on vitamins and supplements after reading new research on the potential dangers. I do take a Synthroid for my thyroid condition every morning. Sometimes I give in and take medication for the swelling in my body, but the neurologist has warned me about taking too much. She has limited me to 3 doses per week because too much can cause bounce back symptoms, and the medication will stop working. Most times I suffer through my pain and just go to bed when I need to.
11. Regarding alternative treatments I: enjoy chiropractic adjustments and massage. Unfortunately both have started to seem like a bit of a waste of money. The adjustments sort of feel miserable for a couple of days, and the massages seem like they work until I get out to the car. Fortunately my husband has gotten great at mini-massages, and I get those often.
12. If I had to choose between an invisible illness or visible I would choose: I have said a million times that I almost wish my recent illness put me in a wheelchair rather than leaving me where I am. I know this doesn't make sense to most people, but that would be visible to remind not only everyone around me but MYSELF that I do truly have a reason to be limited. I, myself, sometimes forget that this is a very real problem I'm facing. And, when I can't walk anymore I get frustrated. Being just that much "worse" would give me a reason to be angry. It doesn't make sense, but it's the way I feel.
13. Regarding working and career: I am lucky to be something that I have a passion for. Teaching really does help me to feel I am being productive and gives me something to wake up for in the mornings. I apologize that my children and family don't give me that same sense of accomplishment. I am grateful that my family understands what drives me and gives me joy.
14. People would be surprised to know: I don't think at this point that anything can surprise the people around me.
15. The hardest thing to accept about my new reality has been: I can choose to work or live, really. I don't get to do both in a day. If I exercise, I would not make it to work. On work days I basically melt into the couch as soon as I get home. We do a lot of TV watching and chatting on the week nights. Weekends I have to watch how much I do so I don't land myself in bed by 8 PM.
16. Something I never thought I could do with my illness that I did was: Working a full-time schedule is something I wasn't sure I was going to be able to do. Although I am employed part-time I am definitely not working part-time hours! We really weren't sure, in July, that I would get here.
17. The commercials about my illness: make me laugh. Since I am not positive what I have at this point, I watch all the commercials about different arthritis medication and drugs for similar illnesses and think about how I could easily have died while taking the Lyrica. It seems like there are all sorts of wonder drugs out there, but the truth is that there are millions who have tried everything with little to no relief.
18. Something I really miss doing since I was diagnosed is: running! Oh, I want to be out there, but it doesn't look like that will happen again. For now I'll just keep encouraging Daniel to sign up for a race so I can watch.
19. It was really hard to have to give up: the gym. Working out had become such a big part of my life that I never thought we would always have a gym membership. For now, we gave it up, though, because even Yoga at the end of the day is just not a possibility right now.
20. A new hobby I have taken up since my diagnosis is: blogging. I was casually blogging before, but I wasn't invested in it. I have come to realize this is not just an outlet for me but a place for others to discuss the issues I bring up and share their own lives as well.
21. If I could have one day of feeling normal again I would: go running. I would also take my girls out to do a fun activity I always thought I would introduce them to as they got older. Some of the outdoor sports I've been waiting for the girls to get old enough to do are now things I can't play. I would love to give tennis a try with my daughters, but I can't handle the quick movements and the running.
22. My illness has taught me: that my family is really good at pitching in. Up until I was hospitalized in April I put all the pressure on myself to get everything done in the house without asking for help. Daniel has been wonderful with getting the cooking and cleaning done. The girls are old enough to handle chores, and we have definitely started to assign more for the girls to do.
23. Want to know a secret? One thing people say that gets under my skin is: they know someone who has gone through the same thing and they did just one change in their life and are perfect now. While I would LOVE for that to be true, I find that hard to believe. If it is true, that is incredible, and I am VERY happy for that person, though!
24. But I love it when people: encourage me to follow my doctor's advice and see if I can get some relief. I love when ideas are thrown out that are practical and given without judgment.
25. My favorite motto, scripture, quote that gets me through tough times is: "Let the Wild Rumpus Start!" Max from "Where the Wild Things Are" is my inspiration. He was able to direct his anger into his imagination. When he came home, his dinner was still warm. In my mind I have a wild rumpus when I need to. What am I talking about? When I REALLY need to I close my bedroom door and have a wild rumpus tantrum listening to loud music and crying myself crazy. Whenever I'm ready, Daniel makes sure my dinner is still warm, too.
26. When someone is diagnosed I’d like to tell them: Do what you need to in order to get through. Everyone is different, and no one really knows what kind of help you need. ASK for what you need. You are important and you are NOT whining when you can't do something you feel you should be able to.
27. Something that has surprised me about living with an illness is: how connected the emotional and physical body is. I definitely feel worse when I am mentally exhausted or upset.
28. The nicest thing someone did for me when I wasn’t feeling well was: coming to visit me in the hospital. I never realized exactly how lonely and scary the hospital is. I think we all THINK we understand this until we are actually there. Many times I know I wasn't "with it" while I was there, but it was nice for people to stop by and let me know they were helping Daniel and the girls.
29. I’m involved with Invisible Illness Week because: Unfortunately I missed this week, but I'll be a part of it next year!
30. The fact that you read this list makes me feel: like you want to know what my life is like since becoming very sick with an invisible illness.