Oh good, the holidays are here. Ahhh…for most people stress levels go up, although CF patients tend to have a highly developed ability to deal with stress, pain, disappointment, etc. it still gets multiplied, lol yay! You kind of have to develop these abilities early in life or everyday is going to be a personal hell, moreover, one that nobody else can actually see. Trust me I’ve been their and it’s absolutely miserable beyond compare, and with the invisibility factor can be a down right mind job. But, there is light in the darkness of the bad health tunnel. Here’s a peak into mine…good and bad. With a focus on the daily routines of a CF patient, dealing with holiday situations, family, and friends.
So, the Thanksgiving and Christmas stretch of the year…Don’t get me wrong there is a magic about this time of year that I love. However, this is the time of year when people get together for this and that, shopping, huge meals, and family functions are exponentially harder with something like CF. Planning everything from what time you have to be asleep by so you have enough energy, but also so you have enough time to go to the bathroom and do your treatments in the A.M. Then to making sure to the best of ones ability that no other people with compromised immune systems are having any health issues currently (older folks, and babies). To making sure you’ve got enough meds to get you through whatever events or functions you are going to do. These many miscellaneous things that normal people probably don’t even consider, or just take for granted are some of the most difficult parts of having an invisible disease. I can’t just wake and get showered and dressed in less than an hour like most people…I have to wake up, and slowly allow my muscles to uncramp from the nighttime of not moving. Then comes “the morning fun,” the mucus…oh dear lord the mucus, coughing until you throw up is something that is never going to become an acceptable routine…It SUCKS badly!!! Then comes actually doing regular personal morning things: going to the bathroom (another thing most people take for granted), making something to eat that you can choke down, and not get sick over. Some more coughing, occasionally coughing up blood…one of the most jarring, sickening, and unsettling things that happen with CF. No matter how many doctors tell you coughing up a little blood now and then is a normal thing with CF…spitting up that metallic taste, looking down in the sink, trash, or paper towel and seeing red sucks the positivity right out of you. Not to mention constantly feeling so tired you could sleep standing up, in a shopping mall. Daily life with Cystic Fibrosis itself is taxing on the body, and that is just the physical side as mentally it is a totally different level of intense, ragging you out down to your soul and rattling your bones for good measure.
Meanwhile, the days keep going by and things keep moving with or without you. As people tend to make plans for the holidays sometimes we just have to say “you know I’d love to be there for dinner at 4-5 but I’m still in the bathroom…” After this happens so many times sadly, but totally understandably people start to marginalize you. You find friends don’t invite you places after you’ve had to cancel, family starts going ahead and celebrating without you, and that can be extremely hard to handle, it gets to you in that place that most people rarely have to experience. Holidays are great times to make memories, and enjoy family and friends, but knowing how to handle these things with a health problem takes time, patience, and practice. Just know if you do have trouble due to a CF-like condition you’re not alone, you may feel alone, but you’re not. Learning how to cope with an invisible illness is almost as hard as the illness itself sometimes…which is kind of ironic in a “sick” way, lol. Funny that’s kind of just scratching the surface of one small time of the year. I could probably go on and on bitching about the things that are hard about CF especially around holidays, or any of the celebratory times of the year.
Having said all of that, the best combatant I have found to not letting this totally overwhelm and consume you, your thought’s, and spirit is keeping things in perspective. This is something that clicked in my brain back toward the end of college: you can either be totally miserable all the time worrying about other people’s normal, knowing that it’s never going to be that way for you or really even get any easier, or you can focus on the things that bring you small bits of joy here and there. With a disease like CF you won’t be able to live a “normal” life, but what is normal really? I don’t know…but, I do know MY NORMAL, and that is something that I’ve focused on the last few years. Enjoy everything you can and enjoy it to the fullest, because you never know when that bad stretch is coming e.g. being in bed for days only to roll out to shower, hopefully eat something, and maybe grab few minutes of fresh air walking the dog. It doesn’t ever become easy, but humans can get used to most things, and sadly with CF those things tend to be uncomfortable, unpleasant, and extremely tedious. So, if you have CF or a disease of the kind, and the holidays seem to be more than the usual added pressure and stress don’t get discouraged…there are many of us out here we just tend to be a bit more “hidden” like our disease’s. Focus on the positive things (easier said than done, and takes a ton of practice), try to get into a “zone” to do your everyday routine: meds, bodily functions, and medical treatments. I find that I kind of go on autopilot about 20 minutes after I wake up when doing my treatments, meds, bathroom, etc. After all the rough stuff is done is my favorite time to shower, as it kind of allows you to start clean/fresh, and that is when I turn the autopilot off and try to be more in the moment. I find the best shower is a nice long shower, stretch the muscles, enjoy the “bliss” that a shower provides, hot until right at the end, then go for a few minutes of cold. Why? well, the experience I’ve had is it pumps you up a bit, wakes you up, and invigorates you, which is something you need after 2-5 hours of miserable morning crap (pun intended) lol. That is just my personal experience, but I’ve also read that a cold shower does do some great stuff for you physically and mentally. Then continue on with your day as planned, do what you need to do, but don’t forget to enjoy what you have the ability to enjoy, as it is very easy to allow the miserable thoughts and feelings to infiltrate your entire day, week, or month! Please remember this is just my day to day, pick what works best for you…and don’t be afraid to try new things or tweak something to fit your particular needs. It is all about how you handle the hardest parts, while not forgetting to enjoy the good ones…Like Christmas, New Years, and the magic they bring to our lives.
So, to finish off this post which kind of took a few sidetracks, life is hard for everyone. Having a disease like CF makes that exponentially harder, and certain times of the year make it more noticeable because everyone else seems to be so happy, and joyful. It can almost be kind of aggravating, but that is letting the disease win, do not let it win! Thanksgiving, Christmas, and New Years are awesome, but don’t force them to feel awesome at the expense of how you feel, or how you choose to handle your daily struggles. Remember to keep your head up as certain things will likely discourage you, and can easily throw you off track. It takes time to master the art of not being able to anticipate anything in life except knowing you won’t feel well. Start the day and tackle as many hardships as you can, deal with them to the best of your ability, and then enjoy what is left to be enjoyed. It will always seem very bleak, and sometimes that is all it is. However, with patience (for yourself and others), tricks and shortcuts you pick up over the course of time or learn from an outside source, and remembering to keep your health as much on the front burner as possible life will slowly show you the way you can take all of the weird, and difficult little strands and weave them together into a life you can live…