Posted by & filed under blog, Education, Miscellaneous.

Hmmmm, summarizing the past 13+ years of my life is going to be hard in 1 blog post…so I plan to split up some experiences and stories over multiple posts so they can be more detailed. But for now, I’ll start with an overview of the college years. Grab those reading glasses and dive in!

** NOTE: These posts and stories are not meant to be a “rant” or a “lets feel sorry for Lindsey” plea. Instead, I would like you all to hear in MY WORDS what I went through. Every patient’s story is different and there are thousands of blogs out there. Hopefully you will find something in my stories that helps you either understand someone in your life better OR cope with symptoms you may have yourself. Either way, I hope you can gather something useful from this information.**

Living with CFIDS has not only changed my life physically, but it has affected me emotionally, financially and socially as well. Imagine floating above your life and watching as something systematically dismantles it and leaves the former you as a shell of your self with no emotion left to even express what has just happened. You stand alone; no friends, no family, no house, no job, no passion, no love, no feeling… no you… lost.

The College Years

So I was a nerd. An avid reader that thrived on debates, knowledge, long office hour chats with intellectual professors, learning new things and travelling to experience other cultures. Oh, and I was a cheerleader. I loved all things athletically related; I took up rock climbing and did that at least once a week. I braved the rapids of the Colorado River with my hippie buddies, I hiked the red rocks of Sedona almost every weekend, killed it in the gym training with the rugby team (only girl as usual) and did a ton of backwoods trail runs and rides. So I definitely had two distinct sides of me…both of which started to become muted around my sophomore year. I could no longer spend all day reading and enjoying extended sessions of debate class and then run out for a hike before hitting dinner and drinks out with friends.

After numerous random colds, flues, unexplained illnesses etc., I was told I had “mono” which the doc said “everyone has and is very common for college students. Don’t worry it’ll go away in a couple weeks.” Needless to say, it didn’t.

Without writing a novel I’ll sum up the months following: By the end of my sophomore year I was spending a lot of weekends at home with my parents sleeping and going to doctor’s appointments trying to figure out what had happened to me.

My Junior year began and I went from taking 21 credits per semester (like I said, I was a nerd) down to 12 or 13 (which I suppose is normal for most people). I wasn’t able to participate in many sports or go on trips with my friends and be able to keep up. The frustration of losing the two parts of my life that had previously defined me (academics and athletics) was an emotional overload by itself. Then some random health scares started happening; pneumonia and heart murmors, muscles spasms, extreme fatigue to the point where I could barely piece together a sentence when I was tired and stayed in bed for 14 hours + per day, extreme weight gain, constant fevers and cold symptoms, and the list goes on. My mom began taking me to specialist after specialist to try and see what the cause of all this was.

After probably a dozen appointments, the idea was presented that I may be Making All This Up! which was absolutely absurd to me! Doctors would look at me and say I looked fine and basically dismiss me because of my outward appearance.

The only person that ever believed me and the invisible symptoms I described was my mom. This is when the anger began. The things that were said to me, to my mom, and about us were pretty hurtful. From her family calling her an overprotective mother to people saying I was just lazy and depressed over a boy…we’ve heard it all. Despite all of that, mom persevered and continued to look for an answer.

By my senior year I was on enough stimulants to kill an elephant and had to be classified as a “Disabled Student” and took classes and tests in another part of campus! Going from honors and graduate work early on in college to this? It was embarrassing! Having been diagnosed with everything from Lupus to Narcolepsy, I was taking a ton of prescription medications. One pill would fight one symptom but create a whole new one that was fought by another prescription that caused more symptoms. Well you get the point there.

During the fall of 2003 my body had had enough and I collapsed on my living room floor. My parents had bought me a golden retriever puppy in hopes my love for animals would get me out of bed to walk him. At first I did everything in my power to do so. But after a couple months it was clear I couldn’t event get out of bed to walk him. I would cry in bed and apologize to him that I couldn’t take him out. It was heartbreaking. So… as I lay there on the floor unable to move, Mac, the puppy started to dismantle the house. After eating a loaf of bread, bananas, underwear, shampoo & other random household items he realized I wasn’t getting up. He started to bring me everything of importance in the house (starting with pillows and remotes) and finally brought me the phone! Having been going to doctors and ERs now for the past couple years, my parents had shelled out thousands of dollars. While I wanted to call 911 to have someone come get me, the fear of the bill came over me. I called my mom instead. (This is the financial aspect of the disease that I will explain more later).

Long story short, I end up taking an ambulance ride to the ER where I stayed put in the hospital due to my liver and kidneys basically shutting down and refusing any more prescription medication (We found this out later of course. I was pumped full of morphine while I was at the hospital because of the pain I was in, which only made everything worse).

After this incident my mom came and lived with me up at school (this is the caretaker part of the story which obviously affected her life since Mom left her husband and my sister, who was in high school to come and take care of me, which we will discuss more later). She attended classes for me and took notes for me to review. When I got even sicker she would read them to me while I tried to stay half awake. She worked with my professors to allow me to complete projects to the best of my ability. A lot of these professors had known me from earlier years and were shocked at the difference in me! But all were happy to oblige knowing I would never miss class if I was well. (Yes I was the annoying girl in the front row with all the questions). I graduated!!! Thanks to my mom, and I was able to get a diploma! Mom invited everyone to come to my graduation, and I was able to wake up and walk to get my diploma, handed to me by Senator John McCain with double degrees achieved. Shortly into my own celebration I went right back to sleep and missed out on part of my own party.

So having graduated, here was my status at that time:

  • Had very few friends, if any. None of them showed up for my graduation
  • The anger had subsided and turned into depression after almost three years of tests with no results
  • My body had started shutting down due to both an invisible illness and because of prescription meds
  • My mom was becoming increasingly worried, emotional, sad and helpless as I detached even more from day to day now emotionless.
  • Doctors had convinced everyone around me (except my mom) that this was something in my head
  • I was attending counseling regularly and started to think I actually WAS crazy!
  • Money was tight with so much being spent on medical bills
  • My dream of continuing my political science career in DC had now not only faded but completely vanished
  • My fall back love of a non-academic career of training horses (always my passion in life) was just a dream from a bed
  • Every possible light at the end of the tunnel turned out to be a dead end

And then there was the car accident that changed a lot of things…

What is CFS? Find Out HERE


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One Response to “What It’s Like To Live With CFIDS”

  1. Nancy

    Just reading this story again makes me want to cry for all that you hav been through Lindsey and for all the things I couldn’t change for you as your Mom. There is nothing more painful than to watch your own child suffer and you are helpless to do anything about it. The story is true about the people surrounding us….many thought she was crazy and it was all in her head. NO ONE would want to live this way and certainly not someone who had so much passion as Lindsey. It has been a long and frustrating battle that is not over yet, but I believe in her passion to help others who have had family and friends give up on them. It is a lonely place to be and I know Lindsey wants to help others , like her that are judged everyday about their illness and their lives. I have lived through this with my daughter and understand the loneliness. I am determined that as long as I am here, she will never feel alone in this battle.


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