I am a very stubborn person. If I really want something, I don't take no for an answer, even when it's my own body discouraging me.
I have wanted to be a doctor since I was in elementary school. I've always wanted the college experience shown on TV, one with deep friendship and crazy experiences. I've always wanted to do adventurous things with my loved ones. I've always been a huge foodie who loves to eat everything and anything....well, I'm pescatarian so not "everything" I guess haha.
My body slowed down before I was old enough for college and it's still slowing down, but my desire for all these things continues to soar. People told me to choose an easier path and some even told me to take a few years off before I went to college, but stubborn me didn't listen.
So here I am- a pre-med full time student with the same dreams that are more intense now than ever before. I study until 3 am with Tylenol and oftentimes an ice pack on my desk. I go out to eat with my friends even when chronic fatigue says no. I fight through my pained body and go on hikes with my friends and family. As I am typing this, I am eating a bowl of vanilla ice cream with waffle chunks(tastes even better than it sounds) even though I know my health issues have slowed down my metabolism.
I know there are several other people in the chronic illness community who are also trying to achieve their goals and fulfill responsibilities while also being a full time patient. A lot of fellow spoonies are trying to be mothers, fathers, students, teachers, doctors, etc with pain killers in their pocket and pain weighing down on their body and fatigue weakening their mind. Others are compelled to be a full time patient(which people don't realize is a full time job) while also trying to find joy in life to distract them from thoughts about everything they have had to give up.
My journey of being a full time student and patient has taught me a lot. It has taught me that I need to give my health more importance than I already do. It has taught me that sometimes I need to push myself to put my stubbornness aside and listen to my body.
I am going to continue my degree for as long as I physically can and I'm not sending my friends a goodbye letter in the mail, but I do need to do a few things differently and I want to share a few things I have learned that might help you or one of your loved ones.
Don't drink caffeine after 6 PM, even if you have work to do, because your fatigue is still going to win. Drinking caffeine to stay up late and study has NEVER worked well for me. It feels like the fatigue and caffeine work together- I feel too drained to focus but too caffeinated to sleep. I end up laying in bed and don't sleep until 4 am and then feel even more fatigued the next day and thus, end up being even less productive. It is best to drink some WATER and sleep by 1 and do whatever you need to do tomorrow morning
Don't let stress stop you from taking your medication. I am sooooo guilty of this. I am the queen of crumbling under academic pressure. Do whatever it takes to make sure you stay diligent about your care; set a reminder on your phone, tell your boyfriend to text you, put sticky notes all of your wall, or really anything it takes. Oftentimes, I would go study with other people so if you are like me, then take your medications and vitamins with you.
Attend therapy. Having a physical disability oftentimes coincides with having a mental disability and you should be 100% unashamed of that, but also 100% attentive to your symptoms. As we all know, society sucks in many ways and one of those ways is by stigmatizing therapy, but it is so necessary to take care of your mental health. If you are a student, explore your university's free counseling. If you do not have access to affordable mental health care, try exploring some highly rated cognitive based therapy workbooks/books.
Have friends who understand that you will have to skip events because of your health. My anxiety caused me to believe that my friends will all leave me if I don't attend every single social event they invite me to and I'm slowly getting used to the idea that that's not true. If I am really sick and feel like it's better to stay home, then I should do that. It's important to push yourself sometimes if you want to do it all, but every chronic illness patient knows that some days are worse than others and I have learned it is crucial to listen to my body when it is literally screaming 'no.' My body gets to say no.
Eat a good amount of protein and drink water throughout the day. I would- and still do often- stress eat a lot of refined carbs and it always made me hungrier later and even more depleted of energy. Make sure you are eating fewer refined carbs and more protein. I also would do a horrible job of drinking enough water which it made it even harder to concentrate on top of the fibro fog. I am slowly starting to do a better job...shoutout to my water app and my friends for pushing me to be a healthier human.
Find joy in the little things. As cheesy as it sounds, if you start finding joy in little gifts, life will become so much more beautiful and bearable. Look at the stars and truly appreciate how beautiful they are and how lucky you are that you get to see their beauty. Eat some really good food and enjoy its flavors. Listen to the stories your friends tell you about their lives and admire their strengths and unique journey.
I don't have it all figured out but I guess part of being alive is consistently learning how to do and be better. If you're reading this- whether you are perfectly abled or bedridden- I am rooting for all of your dreams to come true and I hope this post helped you in some way or was a good read at the least.
Sending you love <3