I got a question from a reader not too long ago that asked:
“What do you do when you are just so sick and fed up of being sick?”
Sick of being sick, isn’t that a hell of a thing? Well it’s true. I don’t care how resilient or tough you are, this feeling is one that will pop up often.
I refer to it as frustration.
Cystic fibrosis care is unique in that we don’t see major immediate gains from our treatments. In a lot of ways, the hours of nebulizers, Vest therapy and whatever else we do show very little in the way of positive results. It’s like a Band-Aid, just a really long lasting Band-Aid. It’s not like when you’re working out, for example, and you see muscle growth over a period of time. Our treatments slow the progression of the disease; they don’t improve the prognosis…..yet.
What is noticeable, however, is when we don’t take care of ourselves. If we refuse to do our treatments, take our pills or live a healthy lifestyle, things can come crashing down pretty quickly.
It’s a strange dichotomy. There is very little material reward for spending HOURS (for me, I’m looking at 2-3 hours of nebulizer, physiotherapy [Vest] treatments per day, 6 hours attached to my feeding tube while I sleep, and about 50 pills throughout the day) performing our treatments, while there is a major cliff we can hurtle off if we don’t do our meds.
I know what you’re thinking, “but if it helps you stay alive… then why would it be so hard to commit to your meds?” and I’m going to stop you right there. Throw in a full time job, the necessary 8ish hours of sleep, a social life and whatever else it takes to be successful, then try and maintain that for a full lifetime. It’s not the easy.
But such is life.
I understand the frustration that my reader is alluding to in her question. How can we, as cystic fibrosis patients, maintain all of this care behind the scenes and then be expected to be our happy cheerful selves around the clock?
I have no f*cking idea how we do it, but maybe it’s just our inherent response to constant adversity.
I look for different sources of motivation. The ultimate motivation, for me at least, is the collection of memories I have from when I am healthy. For the lack of a better phrase, it f*cking sucks being sick. It’s a pain in the ass for me and it’s a pain in the ass for my caretakers and support system. When I’m sick I return to my childhood and lean heavily on my parents, my friends can’t spend time with me (if that’s something they’d want to do anyway? [joke]) and I lose the short term opportunity to continue living life on my terms.
Being sick is not fun, and it’s okay to admit that. It’s NOT your fault, it just happens.
But it comes down to being able to pick yourself back up.
For the past couple months my health has been relatively good (knock on wood it continues that way!), except for the ligament I tore in my foot a few weeks ago, but I know at some point that it is inevitable I’ll be dealing with illness for a period of time, and then I’ll have to pick myself up. I’ll look to my stable health, the memories I created during that time and use that to get me out of bed when I’m not feeling well.
Because, ultimately, that’s my trick… getting myself out of the bed and carrying on with my day regardless of how I may be feeling. The time I spend feeling sorry for myself is time wasted. Even in the most dreadful of times it’s important always to look for a positive.
Right when I graduated college in the Spring of 2013, my health was at the lowest point in my life, but I still felt that it was imperative to my emotional wellbeing that I find a way to be proactive. So I volunteered myself for clinical drug studies.
I’ve since recovered a bit from those days, but my point is that there are always going to positives inside a negative, you just have to look, and I promise that you won’t have to look beyond the things you already know. Often times those very positives will motivate you to get through a dark place.
Ultimately being sick is a reality that I am going to have to face many times over, and you will too if you have CF, but the best way to take it is head on. It’s okay to be beat down, but you have to find a way to get yourself back up. That way is usually standing right in front of you, you just have to see it.
Send me an email at GunnarsBlog@Esiason.org if you have a question like this one.
My friends over at AbbVie announced the opening of the application period for the AbbVie CF Scholarship program, marking 25 years of honoring students with cystic fibrosis (CF) as they pursue their educational dreams. In honor of the scholarship’s 25th anniversary, AbbVie is also introducing a new award category – the Blogger’s Choice Award. Since its inception in 1993, the program has awarded more than $2.8 million in scholarships to deserving students across the country.
AbbVie will select 40 exceptional students to receive $3,000 for use during the 2017-2018 academic year based on their creativity, academic excellence, community involvement and the ability to serve as a positive role model for the CF community. These 40 recipients will also have the opportunity to compete for public votes to qualify for the title of Thriving Undergraduate or Thriving Graduate Student, and will receive a total scholarship of $25,000 (the original $3,000 scholarship plus an additional $22,000).
New this year, cystic fibrosis bloggers selected by AbbVie will evaluate the creative submissions of the 40 AbbVie CF Scholars to determine which scholar (who is not already receiving a Thriving Student scholarship) will receive the Blogger’s Choice Award. One student will be selected to receive a total of $25,000 in scholarship funding (the original $3,000 scholarship plus an additional $22,000) for use toward education-related expenses.
Applications will be accepted from now until May 24, 2017 and are available online at: www.AbbVieCFScholarship.com. For more information about the application criteria, contest rules and upcoming deadlines surrounding the application process, and to view creative submissions of past winners, visit www.AbbVieCFScholarship.com.