Friday, October 27, 2017

Coming to Terms with (Invisible) Chronic Illnesses

I was a very active person before chronic fatigue hit.

I played a slew of sports growing up. I used to race against the boys to see who was the fastest in the fifth grade. I was always one of the few girls who loved co-ed PE because the girls usually didn't want to play sports and I loved them. Basketball, soccer, handball, track and field, tennis, volleyball... I loved it all. I was one of the 2-3 girls who dared to play flag football with the guys during my freshman (and only) year of (public) high school. It was so much fun!

I also grew up with a love of dance. Ballroom, Mexican folkloric dance, hip-hop, swing, tango, etc. I did drill team and cheerleading when I was in public school, too. I still have a great love for dance and have been known to dance instead of walk at home and even in grocery store aisles... and I don't even notice until it's too late. lol.

When I was at my CINO college alma mater, I used to love walking down and up a steep hill on campus that connected the lower floors of the Humanities building to the center of the campus... and then up the stone steps up to the chapel. (side note: for those of you who don't know where I attended undergrad, the campus is on top of a local mountain range so it was all hills, some very steep). Sometimes, when I had a couple of hours to kill in between classes, I would head to the campus gym and walk on the treadmill.

Up until about a year and some months ago, I had energy that my friends would jokingly say I should bottle up and sell. Sometime during summer 2016, I became a lot more tired than usual. By the time March of this year rolled along, I started struggling with simply staying awake while sitting. Even after 10+ hours of sleep, I just can't keep fatigue at bay for long. I try to avoid things with wheat/gluten (which makes things worse for me) but it doesn't always help and some days the fatigue is so intense that I can't do what I need to do... and it's frustrating.

This past weekend, I had two exams. I chose to do one on a day that my mind was sharper than usual and that I didn't feel tired. I had this "you know what? I didn't study that much for it but I feel so good... let's do it!" I passed the exam in a shockingly high grade (at least a high grade for this class which is despised by most people who take it). Shout out to Bl. Pier Giorgio Frassati and St. Jude for helping a girl out on that exam!

I ended up taking the second exam on the day it was due because a hard wave of fatigue hit between the first exam and the second. I put it off until the last day because I know that my mental fog is terrible when I'm extremely tired. I studied all day of the exam. I knew the material in the morning... but as I got more tired, I struggled to remember what I had read only minutes before. When I was taking the exam, I knew I wouldn't pass.

I struggled to comprehend what the questions were. I had to re-read some of them 2-3 times before my brain understood what the question was. That's how bad my mental fog was. Everything I studied (and I'd watched the lecture videos a minimum of 3 times and had gone over the material several times on different occasions) flew out of my mind. I was left struggling to not only stay awake during the exam but also try to remember what I'd studied. I received a 66%. Ouch. To say I was frustrated and upset would be an understatement.

I hate not being able to do simple things such as cooking for myself. Yes, you read that right; I can't even cook for myself on days when my fatigue is particularly bad and I feel like my legs are jelly and/or I'm falling asleep standing up. I hate not being able to clean the house as I was used to. I hate not being able to study properly because I'll fall asleep. Yesterday, I fell asleep twice while wearing my contact lenses because my body felt too heavy to walk then 7 steps from my bed to the bathroom... and I couldn't fight the tiredness.

Last month, a doctor I saw (I've had a rotation doctors while I was assigned to a new one after my doctor left in June) added chronic fatigue syndrome (CFS) to the list of reasons why I couldn't do something I was asked to (I had to have a doctor sign to confirm my physical inability for it). My next round of bloodwork is next month (in exactly 3 weeks, actually) and if they see that everything is still within normal range, they'll most likely add CFS to my medical record (they require a minimum of 6 months with symptoms and no medical explanation for it). We're still hoping for a positive gluten test (which would explain the fatigue, mental fog, and low platelets) but if nothing comes up, it's going to go the CFS route. If there is no medical explanation for this fatigue and it's CFS, it's going to be a hard pill to swallow as there's no cure for CFS.

Last week was Invisible Illness Week, bringing awareness to illnesses you can't see but are present. I have three confirmed invisible illnesses: (chronic) PTSD, thrombocytopenia (low platelets), and food allergies. If CFS gets officially added to my medical record, it'll be four. I know, I'm a lucky gal. lol. It didn't take long for me to accept my PTSD because it became an answer to the depression, anxiety, and other symptoms I've experienced since I was 15. Through cognitive-behavioral therapy, we were able to get to the root causes of the PTSD and the symptoms have gotten so much better in recent years with panic attacks becoming increasingly rare.  Food allergies, well, no one can predict those. Thankfully, the allergies and tolerances have not been life-threatening or severe so I just have to be careful with what I eat. We don't know the cause for thrombocytopenia though we're currently hoping that perhaps it's the result of a gluten intolerance. This one has been harder to come to terms with because there can be no possible cause for it (it randomly appears in some people) and not knowing the cause or how long the symptoms will last is scary. If I have to add CFS to the list of things I'm physically enduring that have no explanation, it's going to take a lot for me to try to be okay with it.

Before you start on a "you have to trust God" lecture, let me just say that I know. I know... but it's still hard because it's potentially life-changing and that'll feed into my PTSD. It's so easy for someone to say that I have to trust God when they have no idea how hard it is not only physically but also mentally and emotionally. Again, I know this and I do work hard towards this but it takes time because my weak human mind needs the time to adjust to big changes.

In my quest to try to accept things and trust God, I try to find the silver linings. Thanks to my PTSD, I avoided a life that could've put my soul into a lot of danger (Hollywood is not the best environment for anyone wanting to avoid sin). Also, thanks to the PTSD, I was able to spend more time with my father during the last years of his life. I was England-bound for college but my anxiety kept me at home and it helped me be able to help my father when his cancer returned and became terminal. Having thrombocytopenia and (formerly) anemia helped me learn how to better take care of myself and learn that self-care is important because I had the habit of running on empty and neglecting myself. Having food allergies has helped me discern what I put into my body and has helped me learn to get creative with what I eat (applesauce instead of eggs for pancakes, anyone?) So far, CFS is helping me learn that it's okay to be reliant on others for help (challenging my super independent "I can do everything myself; I don't need help" mentality) as well as understanding what it means to truly trust God.

There are two things that I continue to struggle with (that I'm working on) and both involve my future.

Sometimes I find myself wondering if I'll have the energy/stamina/health to have children. I've always wanted a family and children. Some of my earliest memories have been of me announcing that I wanted to be a mama (and this pre-dates me saying I wanted to be a nun) or caring for my dolls. I'm a "mama bear" to my friends. That desire to be a wife and mother has become a longing that I struggle with on some days. On days when my fatigue is particularly bad and my body feels like lead, that little seed of doubt that I'll be able to become a mother and/or do a good job grows. That leads to the second thing I struggle with...

More often than I care to admit, I wonder if I'll ever find someone who will accept me as I am -- with chronic illnesses and all. I've had my fair share of guys disappearing as soon as they find out the medical crosses I'm carrying. Some guys get spooked off by the food allergies which is the least problematic of what I deal with. Sometimes I think that I won't find someone because these things are not easy to deal with. I hate to say it but I don't know many people who would want to deal with someone else's problems on top of their own (my own friends not included in this statement). I wonder if I should just get used to the idea of being on my own... and wonder how I'll be able to pull it off when I want to work but my body is not cooperating with me. I fear that perhaps I won't find someone who can't look past what I can't do to look at what I can do and what I can offer.

Deep down, I know God will help take care of me. I know He will either give me the resources and/or graces necessary to do what I need to do. Every time I feel like giving up (because I fail an exam due to my mental fog) and I begin to question whether I'm cut out for this career path, I'll somehow miraculously pass the next exam or I'll do well on an assignment that keeps my grades afloat. I know that if this is the career path God wants me to take, He will help me get through this program (graduation is scheduled for May 4th of next year) and will help me figure out how to balance whatever physical issues I'm dealing and a proper job. I know that God will make sure I prepare myself well enough to be the best wife and mother I can be to my future husband and children if that's my vocation (which I've discerned long enough to feel 99.9% sure that I'm called to). Still, those moments of doubts do appear from time to time and it's when I know I have to step it up in my prayer life.

The 54-day Rosary novena is coming up in a couple of days and I know what two of my intentions will be: for my health (that we either find the causes for what I'm going through or that I can figure out how to manage the symptoms so that I can keep moving forward) and for my vocation (small v; that I pass my courses and graduate next year or that God helps me find a job that I can do while dealing with my chronic fatigue so that I can pay back my student loans if being an SLPA is not what He wants me to do).

I'm sorry for the downer vibe in this post but I don't really see posts like this out in the blogosphere (including the Catholic world) so I wanted to write it in case anyone is in a similar boat. Also, this part of my own journey and part of my life I felt like I should share so I wrote it all out.

Alright, well, I guess that's it for now. I'm having a terrible mental fog/fatigue/body feels like lead day but I think I can still manage to get some groundwork done for when I'm ready to start memorizing terms for next weeks exams (2 exams and 4 quizzes due next weekend) so I'm going to try to do that. :) Oh, and please let me know if you want in on next week's 54-day Rosary novena either by commenting on the blog post for it or by leaving me a message/comment on the blog's FB page.

I hope y'all had a lovely week and have a great weekend! :)

As always, thanks for reading and God bless! :)


Christina said...

I ran across your post in the middle of prepping for a talk Sunday to our local Newman Center, which I've been asked to give largely because of my experience of chronic illness, including seven years with myalgic encephalomyelitis also referred to as CFS. In my case, I started out with the CFS diagnosis in 2011, (I've been moderately to severely ill since 2010) and then have had a few additions since then.

I really wanted to tell you how much I appreciated your piece. For several years, especially since my conversion to the Catholic faith this year, I have felt like ME/CFS and other neuro-immune illnesses are a form of suffering which is largely ignored by the Catholic community even in blogs. Like terminal cancer patients in the 1800s, who were largely abandoned until the Hawthorne Dominican order was founded, ME/CFS, neuroimmune illness, and environmental illness patients are those abandoned in the 21st century. I hope God will guide your steps forward on this path of difficult chronic illness, and that you will continue to write about this topic.

Emmy Cecilia said...

Thank you for your kind words, Christina. I'm terribly sorry you're dealing with CFS. May I ask how you're able to work around some of the more severe symptoms/harder days? I'm new to this level of fatigue and I feel bed-bound some days.

I'll be praying that your talk goes well! God bless you!