So, this week in Invisible Illness Awareness week, and there is a 30 things meme that has been going on for a couple years. I find these interesting and like to read them when it comes around each year. So, this year, I have decided to throw my hat in the ring and do one. It is probably a bit different that many others, for reasons that will probably become obvious once you read on. But I hope it helps me as well as helps others, since many people seem to get a real sense of peace and purpose from sharing their story. Not sure if I will continue blogging after this, I guess I will just have to call it as I go. Anyway, here we go
30 Things You May Not Know About My Invisible Illness
- The illness I live with is: Autonomic Dysfunction, also called Dysautonomia. Specifically Neuro Cardiogenic Syncope (NCS), Inappropriate Sinus Tachycardia (IST), and suspected POTS (Postural Orthostatic Tachycardia Syndrome). Basically, my heart rate and blood pressure are all over the place. I can feel dizzy and lightheaded one second, like I am having a panic attack the next. Many other symptoms too numerous to list, so you will just have to google it. Also, Endometriosis—which causes mostly pain and crazy hormones. More are potentially on the way-Docs still trying to figure it all out.
2. I was diagnosed in the year: Endometriosis was 2003, first accurate diagnosis for AD came in 2012, more coming in since then.
3. But I had symptoms since: Endometriosis since 1995, Autonomic Dysfunction since 2011
4. The biggest adjustment I’ve had to make is: Letting others do things for me, stuff I used to be able to do myself. I have to have my husband carry anything heavy. I have to let other people drive me. I have to ask some else to go get things out of the basement because stairs and I are now mortal enemies. So many things I used to do myself, but now have to ask for help with.
5. Most people assume: that there is nothing wrong with me and that I am just anti-social. I have told very few people about my problems, and I instead I will just miss an event, or suddenly slip out early, etc. I will probably be rather quiet and sitting in the back, where I can make a quick escape if necessary. Almost no one realizes that the reason I am not chatting is that doing so can make me light-headed, or maybe I am trying to use controlled breathing and focus to bring down my heart-rate. Or my endometriosis is flaring, and it feels like every muscle from my chest down is cramping. Or if I have gone Hyper, that the smell of your food, or the bright lights, or the level of noise is high enough to send me into sensory overload. And while not classically painfully, sensory overload is still very, very unpleasant. Generally speaking, very few people know how to spot the signs this is going on–a particular chest arching when I get a run of tachycardia, a slowed movement from pain or muscle weakness/fatigue. Generally, I just get lumped into either I’m mad or antisocial.
6. The Hardest thing about mornings: I hate mornings, with a passion. Mornings are on my hit list, along with stairs and bending over. It takes a couple hours of meds and hydrating to get me physically up to doing anything–and that is on a good day. I would prefer that I never do anything until at least noon. Trying to get ready and out the door against an early deadline (early church, school drop off, etc.) is one of the fastest ways I know to trigger an episode. Go too hard too early, and you will at minimum ruin the rest of the day, and at worst spend next several weeks trying to get it back under control. My problems with mornings are one of the reasons being able to work a job is such a problem.
7. My Favorite Medical Show: I use to really like House, but I don’t watch it or any other medical show anymore. House becomes a fair bit less fun to watch once you start recognizing the diseases they are testing for, because you have been tested for them too.
8. A gadget I could not live without: My laptop/ipad. My laptop is on its last leg, poor thing, but we somehow keep putting it back together. On bad days, my laptop/ipad is pretty much my only connection to the world, and my only thing to do for entertainment (we are cord-cutters). And when bad episodes can mean you don’t leave the house for over 2 months, that connection to the world becomes pretty important. Plus, it has allowed me to connect with other AD and endometriosis patients, which has been invaluable. I have only once had a chance to meet others in person that have AD, and it was incredible. But there are so few of us out here in the Midwest, using the internet to find each other is about all we have.
9. The hardest part about nights are: Probably the insomnia. The insomnia SUCKS. It can be a true insomnia (once did not sleep for 5 days) or it can be an inability to get into a deep, restful sleep so you end up feeling like you did not really get any sleep. And when you are up, unable to sleep, you have lots of time to think about and contemplate how your life has changed and an uncertain future. Sometimes the silence can be overwhelming. But, at the same time, if I have gone hyper and the noise, smells, and lights are uncomfortable, night is usually the only respite. So it can be a double edged sword.
10. Each Day I take 7-9 pills and vitamins. I have prescriptions for many more, but I try not to use them unless it my condition has really hit the fan.
11. Regarding alternative treatments: I use compression hose, eat lots of salty stuff and have to drink 2-3 liters of day of PowerAde/salted water. I need to find the special exercise program for AD that I have been hearing about. I have not really tried any other alternative treatments, but would not necessarily be opposed.
12. If I had to choose between an invisible illness and visible illness: Yeah, this is a hard one. They both have their pros and cons. When you have a visible illness, at least people believe you, and I imagine you get faster treatment, because they can figure out what is wrong with you. But, because it is visible, everybody knows you have it, and I imagine a lot of people define you as an illness before a person. With Invisible illness, it can be very hard to get people to believe you (including doctors) and, if it is a rare disease, you can spend forever just trying to find some relief from it. But, sometimes you can also “appear” normal, and for a little while pretend that your live a “normal” life. I am not sure I can answer this one. Being on the invisible side, of course the visible side is greener. But if I went over there, I don’t have a lot of faith I would not think the invisible side is greener.
13. Regarding working and career: Yeah, I used to have one of those. Currently do not, and not sure I ever am going to again. And I have doubts that if I got back to working, it would ever be more than part time. On good days, yes, I could probably hold a job. But you just never know when a bad day is coming or how many bad days you are going to have in between good ones. Combine that with my affinity for mornings, and your result is unemployment. How do you hold a job when uncertainty is your reality, especially in this competitive job market? I need to learn some sort of trade—sewing, wood working, etc.—that I can do at home on my good day and try to sell it esty or something.
14. People would be surprised to know: I carry a lot of guilt. I did not cause my illnesses, but I feel guilty never the less. I don’t feel heroic and brave for facing this. I feel broken and defective and like I am a burden to those I care about most. I feel guilty that I make my family miss good times. I feel guilty I make them take off work to drive me to the doctor. I feel guilty money we need for a new car or a house down payments goes to my doctor visits, medical procedures, and prescription drugs. I feel guilty that on bad days I cannot even clean my own house or take care of my own kid. And I know I should not feel guilty—I would not feel resentment if the situation was reversed and I was helping them—but I still feel guilty. Then I feel guilty for feeling guilty. It is a vicious cycle that does quite a number on one’s confidence.
15. The hardest thing to accept about my new reality has been: Letting go of the picture in my head of what my life is/was supposed to be and accepting the uncertainty. I knew how many kids I wanted, the house I wanted, the career I wanted. I had a plan for when I would have it and what I needed to do to get it. My path was in front of me, and I knew what I had to do. Yeah, pretty much all of that has gone out the window. I don’t know what my future is; I don’t know if I can have more kids, or even if I can, if I should. I don’t even know if I am going to be around long enough to see the kid I already have grow up. I don’t know if they will ever figure out everything that is wrong with me, or if I am destined to watch life pass me by. I JUST DON”T KNOW. And uncertainty can be a real bitch. When the rug has been pulled out from under you, you look to family but also to the things you had hoped and planned for in the future. A light at the end of the tunnel, so to speak. When you are not even sure what light is waiting for you at the other end, it is real easy to lose your sense of direction.
16. Something I never thought I could do with my illness that I did: I don’t really have one for AD yet. But for the endo, I was able to have a child, which I was told might not be possible. It was a horrible pregnancy, but still worth it.
17. The commercials about my illness: Bwwhahahahahahaha, that is a good one. I am lucky to find a DOCTOR that has heard about autonomic dysfunction, let alone a commercial about it. And endometriosis is a women’s disease, so of course it is pretty much ignored.
18. Something I really miss doing since my diagnosis: Um, everything? Working, exercising, taking my kid to the park, vacations, shopping, caffeine, alcohol, being able to go out by myself, doing what you want when you want it, housework (yes, even housework), and many more. Some are permanently off limits, some I can do on good days, but cannot on bad days. But it forever looms over you; is this going to be a day I can do it, or a day I watch from the sidelines.
19. It was really hard to give up: Control. I admit I can be a bit of a control freak. I have always been a take charge, do it yourself type person. I am not sure I would consider it healthy, but I always kind of had this belief that failure was the result of not trying hard enough. This is a belief that is very incompatible with having a medical condition like Autonomic Dysfunction. With Dysautonomia, your body is in control, not you. It does not matter what you have planned, or how bad you want to participate—If your body says no, the answer is no. Trying harder, in general, is probably just going to make it worse. You can’t get around it; it’s just the way it is. You just have to let it go—and this has been very hard for me to accept. I am still working on mastering this.
20. A new hobby I have taken up since my diagnosis is: umm, pinterest? I have tried to make a few things I found on there, but not sure that really counts as a hobby. Still need to find a hobby I can do.
21. If I could have one day of feeling normal again I would: My first inclination was to go hiking in the mountains, as there is a place I really want to visit in Colorado, but likely can’t due to the elevation. But, in reality, it would be to spend all day playing and being active with my son. Play soccer with him, ride bikes, run around the playground. He is so energetic and I wish I could keep up.
22. My illness has taught me: You have to be your own advocate. If is far too easy to get lost in the system. It may not make you the ideal patient, but it is better than suffering more than you have too.
23. Want to know a secret? One thing people say that gets under my skin: There is the typical “you don’t look sick?” Or the “you just need to get out/exercise/eat better etc.” That is always fun. Or the accusation that you are faking/exaggerating/have psychological problems. But, generally, I think it comes down to the awkward way many people treat you they know you have a serious chronic illness. It tends to fall into certain categories: treat you like your made of glass, pity, fake concern (usually followed by above advice or their own illness story), or the polite inquiry where a response other than “I’m fine” was not wanted. This is why, in general, I don’t talk much about my problems. It changes the way people talk and relate to you.
24. But I love it when people: treat me like normal person who has a few quirks, but don’t make a big deal out of it. And people who can anticipate what I need without making me ask for help—they are my favorite people in the world.
25. My favorite motto, scripture, quote that gets me through the tough time is: I am open to suggestions on this one. I guess my current favorite would be It’s Okay to not be Okay as long as you are not giving up.
26. When someone is diagnosed I’d like to tell them: educate yourself and reach out to other people that have your illness, in person or online. Also, believe in your gut instincts and don’t let anyone else convince you otherwise.
27. Something that has surprised me about living with an illness is: It can bring out both the best and the worst in people. It is kind of amazing. Some people will be so great and so understanding. And other will be judgmental, inconsiderate, and downright mean. Having an invisible illness, you get a chance to see people’s true colors when they interact with you.
28. The nicest thing someone did for me when I wasn’t feeling well was: My family is very good about helping me when I am not well. My parents give up their day off to come clean my house, my in-laws letting me move in for a few days since there were no doctors for me to see in our home town, hubby taking over kiddo duties. However, I think the one that meant the most was when my mother took off work and drove down to our town so that she could take my son to the tumbling class we signed him up for but that he was going to have to miss because I was not well enough to take him. I suffer from profound feelings of guilt that my being sick punishes my son. The fun stuff he misses because I can’t take him, stuck inside with me because I can’t go outside in the heat, it goes on and on. It is one thing for an illness to screw up your life, but it is another thing when if messes with your kid’s life. It makes me incredibly upset when I cause him to miss out, and her coming down so that he did not have to miss out means more to me than I can even explain.
29. I’m involved with invisible illness week because: I would like more understanding for people that suffer from chronic illness, and more awareness that my particular diseases exist. But I also hope it is somewhat cathartic for me as well. Chronic illness can be very isolating, especially when you keep what it does to you from the world. I hope sharing some of it will help me overcome some of the issue I have dealing with and accepting my own limitations.
30. The fact that you read this list makes me feel: Honestly, pretty self-conscious. I have kept pretty much everything about my illness that I could a secret. I desperately want to pretend life is like what is was before. But it is not, and I have to accept that. And keeping it to myself is not helping anyone, most notably me. I spend a lot of time feeling like a burden, and a large part of me does not want to burden my loved ones more by letting them know the full extent of what I deal with. I want to be known as a person before I am known as an illness. I don’t want the first thing people know about me to be that I have limitations. I don’t want to accept that this is my new reality, and telling people makes it real. I guess you could say I am still working on the acceptance stage. I read so many blogs of people with the same illnesses I have, and they seem like they are much more accepting and at peace with it than I am. It gives me hope that I will eventually reach this level of enlightenment. But I am JUST NOT THERE. And I have not seen a whole lot of stuff out there from people who are angry, depressed, lonely and having a hard time accepting their fate. I think we keep a lot of this to ourselves. So I guess this is for all of the people out there who are in the same place I am—with their shit completely and totally not together.
Dysautonomia Dorothy 