I pondered long and hard about sharing this post…. it feels vulnerable and exposed and it’s not what I am most passionate writing about but I figured I would share my story….
Where to begin is the only way I can start this post. I am so fittingly listening to a song called I Lived as I write this. Cute. Anyways in the last year and a half I have moved twice, lived bedbound for months, had a spirtual NDE (near death experience), almost actually died, came back to life, spent time in 3 hospitals, spent time in an Eating Disorder facility -aka jail, got medi-vacced to two places, flew on a normal plane, spent time with addicts of all kinds, relearned how to perform daily activities of living, lost 30+ lbs, gained 40 lbs, got angry at a lot of things, forgave a lot of things, came to acceptance about a lot of issues and I’m sure the list could go on and on….may 2015 be a new year to say the least.
So I’ve had serious digestive problems ever since this whole CFS thing came around…you name it, I experience it and on top of that there’s good old Interstitial Cystitis in the background (I think they’re all connected but that’s besides the point) which gets pissed off with a long list of random and not so random foods that they give you on a piece of paper to figure out. So now comes the act of eating which is a necessary need of life-You know the basic needs on those pyramids: food, water, shelter. Well somehow during the quest for “patient heal thyself,” my food list was falling smaller and smaller and the horrible digestion and fatigue that got aggravated with food persisted. Little did I know, my metabolism was also amped up as when the body is sick it requires even more calories (it didn’t help my anxiety was also at an all time high) So a disaster soon unfolded. After making a decision to go to Florida in the winter as I had done so well the year before, it was not long that the definition of weight loss accelerated to a new meaning and the gut problems became worse and worse. I tried working with dietitains but struggled to maintain a meal plan when I would feel so sick after eating and just ended up giving up. If a food gave me a problem I crossed it off. I had already had a crash there and was spending more and more time stuck in the horizontal position in bed. Then came the TPN or intravenous feeding which worked for a few weeks until more digestive problems started. I then really couldn’t tolerate food and soon stopped being able to digest fat very well. Now my blood cell counts were low. There’s no sugar coating it: Florida was a failure. So back to CT on a medivac only, laying on a stretcher the whole time, only to be admitted to the hospital right away. Ran a bunch of tests, basically get sent home with gastritis and failure to thrive. But this is it! This is the time I can heal my gut! I can find the exact right foods, I will fix everything! Next comes another CFS crash and now I barely have any energy to sit up and eat; there goes 5 more lbs down to a whopping 80lbs. Light and sound had become unbearable and I had to spend most of the time in the dark with headphones. “Emily (the internist) says its time for you to go into the hospital” The NDE (to be discussed some other time) had already happened one night earlier in the week and with complete and utter dread, I knew the inevitable was coming. The hospital -the last place you want to be with a diagnosis such as CFS.
So onto the hard flat stretcher and into the hospital- the first doctor almost throws me out saying go home and eat; soon comes busting in a new team. “TPN is terrible,” they say. “You must use the digestive track – you need a tube.” (The one nice doctor does offer me Reiki with someone from their integrative department when he finds out my interests-she is still a friend today) Enter the psychiatrist with this stern unreadable expression on his face. He stares for quite some time and does the occasional “Uh huh” and “I see.”
“Are you sure you want to go through with this?” he asks. “Well, what choice do I have?” So in goes the nasal tube to test it out. Get fed milk and sugar all night, feel horrible. I didn’t throw up or excrete everything out, so it’s “working.” The nausea and hurling- take drugs. The abnominal pain-take more drugs. Spend 18 hours without food and water waiting for the tube procedure to be done. Was I the only one who thought that’s a terrible idea given the state I am in? Tube gets placed and the pain is excruciating. “Hold off on eating until tomorrow,” replies the new doctor on staff. Another 12 hours without food.
The next morning labwork is done; the doctor comes flying in, “We need to put an IV in for TPN, your organs are shutting down. It’s either that or I can send you to hospice because that’s the situation we are looking at.” Baffled. Confused. “I thought I needed a tube” I was supposed to be going home in two days. Tears. Fear. Reality. In comes the nurse to put the pic line in. My heart rate spikes. Fail. Feelings that I am going to die right in that procedure as she keeps hitting me, calling my name, which I can barely respond. Call in the special radiologist to put in the Pic. Success.
“You aren’t going to feel good” warns the nice doctor. “You have food coming at you through all different methods it’s completely unnatural.” Yes that would be a good way of putting it, feel completely full as I get fed through an iv and a tube. “I almost died” is all I can say over and over again. I can only process it in small amounts. I only comprehend it thinking about all my friends and family pouring in, tears in their eyes, looks of worry and I just imagine if the roles were reversed and I was in their shoes. That’s the only way I can make sense of it. I start crying and then stop. The psychiatrist listens and responds with the hmms and uh huhs. “Depersonalization” according him, a form of disassociation.
Hospital 2, a “special hospital” to rehab and get tube feed going. Get put in a room with a pretty view of the parking lot. It’s a revolving door through the small 80s style room. Physical therapy man arrives who is a little too over enthused and laughs when I ask if he’s ever worked with CFS. Occupational therapy with a kind and quiet woman. A psychologist who is determined to psychoanalyze and find the solution. Argue with him every day about the validity of CFS. Insists that these problems are some kind of psychological issue with my parents. Even agree to meet him half way to humor him and ask him to do the same. Still won’t budge on his view of CFS. Realize my arguments are useless. He’s right my problems are psychological I must have not realized it the past four years in the intensive therapy I’ve done- he’s clearly found the solution to everything.
Chaos in the family. Amazing support from friends and family. Mom comes in every day with a new plan. Still bedbound and unable to do much of the basic activities of life-you know, take a shower, go to the bathroom, cut your food, the things we all taken for granted. “You’re not coming home until you’re stronger.” We had spent the past year looking for an inpatient program that deals with CFS. No such thing exists. And it’s too bad because I have talked to so many people who go through periods of being bed bound or are barely able to take care of themselves. Regardless, putting on weight and gaining back some strength had to prioritize everything at this point. Insurance had cut. Two options given for next step (besides a nursing home): psych ward or eating disorder facility. Well givin those two -what’s left: I choose the ED facility.
Only one ED facility in the country willing to take tubes. Off to Arizona on a medivac once again.Travel by ambulance down a long and winding dirt road that never seems to end. Keep going up hills and turns until we arrive in the middle of nowehere as far from civilization as one could be. Cactus and hills and all different creatures abode. There’s even a donkey on some farm below the hill that eee ahs non stop. It’s beautiful-for a vacation. Horrified when I enter, state of panic and fear when I see where I am. Many eyes fixated on me that I couldn’t quite read. People seemed out of it and dazed. Arrive with a fever and an excruciating injured hip from physical therapy the day before. Cry hysterically. Make one friend who bops in and out at a fast pace while she dodges her “bed rest” orders. Realize quickly that there’s an assumption I am full of crap and an anorexic in denial. Completely shut down.
The first few weeks were brutal. Trying to figure out the rules and then realizing they were ever changing, people questioning why I was in a wheel chair, hearing the mocking comments like “oh you must be so tired, you have been sitting up for sooooo long.” I felt alone. The atomosphere was nothing I had ever expereinced, no dental floss in the bedrooms for it could be used for self harm, no hand santiizer because people will drink it, no flushing the toliets because people might throw up, no cell phones, the list goes on and on and on. I soon figured out why as I heard hurling in the bathroom from my room and the “Oh I forgot- I flushed” over and over.
The days began at 6 am and went till 930 at night. They had me out of the bed quickly but sitting in the chair all day was a struggle for me within itself. Refeeding was another process. The IBS was ten times worse with that volume of food and the amount of variety of things in it. I felt so depressed and alone. It is the worst feeling to not be believed, to be treated as if you are lying especially when you are someone who prides themselves off honesty and integrity. I dreaded each morning. I hit the lowest of all points. I wanted to die and didn’t care if I lived. I finally admitted it when the one on one tech assigned to me said something about me not being genuine. I refer to that as my surrender point. It was probably the best thing that happened to me. By surrendering I stopped fighting so hard. I didn’t care what medication they put me on. I knew I had to do something and that it wasn’t up to me anymore. I got on medication and one day the feelings stopped, I sort of just realized oh hey I don’t want to die. I started to feel some joy again. And in came the psychiatrist that probably saved me. She was warm, compassionate and genuine. “I never once doubted your case that the eating issues were secondary to everything else,” she tells me. She knew of CFS as she had worked with Fibro and a child with chronic paro virus. She had heard of Interstitial Cystitis. I slowly started to trust her. As I started to trust her, I slowly started to trust others. I felt safe once I knew someone was believing me, someone was hearing me. I got the dietitian to listen to me a bit more and work with me on a diet to manage the IC or at least get it to a point so I wasn’t experiencing incontinence anymore. The doctor took my foot pain seriously and ordered me an MRI and a visit with a podiatrist. I began to meet people and some were pretty cool. Once I started to visibly see weight gain, I was excited! My hardwork was paying off. It motivated me more to work hard on finishing meals no matter how much physical discomfort I was in. I was like a little kid obsessed with their body (in a good way), I kept patting my stomach in pride. One plus to the medication was increased appetite and weight gain. But most importantly, I quickly realized no matter how sick I feel, I have to eat, end of story. I knew once I had that realization, I would never have the same problem again. Every part of my being knew I would never end up in the same situation because most importantly I refuse to end up in that place (literally and figuratively) again.
My physical capabilities came back slowly but it was the small things that I appreciated. One day I finally was able to sleep on my side again. One day I was finally able to reach my toes. One day I was able to hold my legs up long enough to put my pants on. One day I was able to hold the handheld shower and shower myself. As time went on, I found other things which I am most excited to blog about. I learned to accept my “conditions” and still have joy living with them. I learned to start focusing on what I can do vs what I can’t do. I learned more patience. I learned compassion. I learned everyone has a story to tell. I learned to live in the now vs some time in the future. I learned how to have faith. And these are the things I am most passionate to begin writing about….. Status update: I spent about 4 months in hospital settings. I arrived home right before Christmas flying on a normal plane with the assistance of a wheel chair. Every day I am becoming more and more mobile. I go to physical therapy and adhere to my very gentle exercises and am continuing on my journey to treat the rest of me which I shall continue to share….