My daughter is also a blogger and a very good writer. I asked her to provide me with a post from her point of view since I blog about her and her illness all the time. I hope this will give you, my readers, a look into the mind of chronic illness via Carly. She really is an inspiration to me and to all of her friends and family. So I hope you enjoy the post.
When you suffer from chronic illness it’s very difficult to remain positive all the time. Now, I’m not saying you’re not allowed to have a “sad day” but as long as you keep those days to a minimum you can survive. The best defense is surrounding yourself with things that make you happy. As someone who has been suffering from chronic illness for the last two years and will continue to suffer in the future here are the five things I find most useful to maintaining my sanity.
- Gratitude List – Have you heard the expression “every day may not be a good day but every day has something good in it?” This is 100% true. When I’m struggling to find the good in a day I find it’s best to write down five things or more that I’m grateful for on that day. I try not to repeat the same things over and over on each list (i.e. Glad to be alive, thankful for my family, life-saving medicine, etc.). Instead, I try to focus on the little things that make that day bearable. The majority of the things on my list are insignificant to most but of major importance to me. And that’s OK. Remember this is for your sanity not for anyone else’s reading pleasure. It can be anything from finding a quarter in the couch cushions to receiving an online coupon for something I’ve been meaning to buy and had forgotten about. Some days I’m just grateful to get out of the house without being covered in dog fur. No event, task, found object or shining light is too small to make it on your list.***BONUS POINTS*** I started writing them down on paper, studying them and then folding them up and putting them in a mason jar on top of my mantle. That way, when I’m having a bad day, and I can’t think of anything to be grateful for, I can pick one out and read it and remember a good day from the near past. Remember, it really is the little things.
- Mix Tape / Movie Bundle – if your illness is anything like mine you’re going to spend a lot of time hanging out in places you’d rather not be. And most the time you’ll be all alone or at least partially left to your own devices. My many, many, many ER visits spring to mind. I think I’ve spent about a year waiting in doctors offices, ERs, labs and various testing facilities. I figured out the best way to pass the time without going insane and going off on the nurses, doctors and techs, (who’s fault it isn’t in any way,) is to be prepared for the wait. My personal choice was to download several movies that I can watch over and over and never get bored with it. The marvelous thing about technology is it gives us several different options for passing the time. The other thing I do for the many test that they run in the hospital and the various unpleasant procedures I have to go through is a decent amount of really good music that makes me happy. Not necessarily happy music, but music that instantly transports me to a happy time in my life. I generally have three playlists at all times loaded and ready to play. I have a nostalgic 90s grunge/alternative list to remind me of my misfit youth. I have my relaxation go to’s like Bob Marley, Enya and The Shins. This playlist comes in very handy when I am put in a very claustrophobic situation such as an MRI or other death trap of a scan machine. And finally I have the upbeat, dance like no one’s watching list. This one is pretty typical. It’s my Beyoncé, Outkast, Gaga, 90s hip-hop, Jennifer Lopez (Jenny from the block-era) shake your booty list. This list is strictly for getting me through the day. These are great for hospital stays. You know what I’m talking about…Those days when you’re waiting hours upon hours for the doctor to grace you with his presence? Yeah, those days. Works like a charm.
- Journal/calendar – you are going to deluged with information. Writing it down is a whole lot easier than trying to remember everything you learn every day. I personally keep a calendar and a journal so that I can keep track of different things in different books. My calendar I use to register doctors appointments, lab appointments, test appointments, etc. I also keep all my daily body measurements that I have to take due to my illness. This comes in handy when you have conversations with your doctors once a month. That way they have all the information that you have and you know that it’s correct. My journal is used to keep track of goals I set, questions I have for my healthcare workers, things I need to accomplish in order to keep myself well. I also record things that I feel need to be brought to someone’s attention. Generally this is a bad practice or some mixup that could’ve resulted in something bad. Trust me, in a hospital this happens all the time. I know this sounds a little bit ridiculous or micromanaged but when you have a chronic illness you have to keep track of so many things, so much information, that your brain gets full and you can’t hold it all. I absolutely could not do all this work for my health if I didn’t have these things.
- Video chat – You’ll end up spending a lot of time in your house. The hardest part about dealing with chronic illness, the thing for me that causes the most depression to set in, is that others lives go on. Your friends and family go to work, take care of their kids, go to parties, and basically continue their life as normal. You can’t take that personal. It’s not that they don’t want to see you or spend time with you. It is that they are healthy and continue to live their lives the way that they have been. Your life is the one that has to change. And that is totally OK. Once you realize that, you are over the biggest hurdle. This is where video chat comes in. It’s nice to see people face-to-face in person but that’s not always possible. And it’s nice to talk to people on the phone or through text or email or social media but that doesn’t give you the satisfaction of knowing that they are there for you, really. If you’re like me, sometimes I just have to see their face. It makes it a connection better than any of the other forms of communication. If you have a smart phone you can download video chat apps like Google hang out, FaceTime if you have an iPhone, or Skype. They are free and your friends and family can talk to you face-to-face anytime. Skype and Google hang out are also available on PC if you have a webcam.
- Silly/goofy things – things are going to be pretty serious most of the time. I found that having things around me that make me just giggle often breaks up the monotony of the bad days. Doesn’t have to be anything big. As a matter fact, most of mine cost less than a dollar and don’t make any sense to anyone but me. Whether it’s a T-shirt that makes you laugh, or a poster of something that makes you think of better times, or perhaps something as simple as a sheet of stickers with google eyes; it is necessary to surround yourself with some kind of goofiness. I have many things like this. Some were given to me in order to cheer me up. Some were found in the oddest places. And some I actively went out in search of. Put them around your house, car or office if you’re still able to work and enjoy the joy that they provide.
Chronic illness can be a real bummer but it is survivable. All of these easy steps will help you accomplish just that. In a world that suddenly became very serious, make sure you have time to nurture the good and fun side too. It’s the only way to keep from going mad. So put your bobble heads on the dashboard, listen to your Weird Al, wear your goofy hat and remember that you’re alive.
C. R. Williams
C. R. Williams is an avid blogger who covers many topics including her struggles with chronic illness and recovery.