Moving Out with Chronic Illness
Created October 1, 2015
Back in 2011 when I was just about to start college, I thought that it was finally my chance to focus on myself so that I could begin building a life. That through gaining my own stability, I would become a better assets to my family's crazy, reoccurring hardships.
I have a very large family, my sister first became pregnant at age 16 and has since had 6 kids, 4 of which my parents, at first had to take legal guardianship over, and now have adopted. (Siblings now totalling at 6 sisters, 1 brother! What a house).
I've been changing diapers, putting kids to sleep, and performing musicals daily since I was 6).
That said, (And a lot unsaid!) I'm here because at age 19, I began to fall ill with a chronic illness. During the past two years I have been almost entirely bedridden. The main issue is Myalgic Encephalitis, or Chronic Fatigue Syndrome. The fatigue is comparable to that of Lupus.
(Which every specialist thinks I have the first time I meet with them. The "House" joke has become to real... It's never Lupus). I also have a variation of the Connective Tissue Disorder Ehlers Danlos Syndrome.Only a daily basis, I strategicly work through extreme Fatigue, Chronic Pain, Stupor and Catatonia
(The pathology is simular to that of a seizure, for me, my body will become completely stuck. My eyes will become fixed, unable to blink, muscles become ridgid, it takes an extreme amount of effort just to move very slowly).
The worst part, is that this typically happens when I attempt to leave the house. I have had instances in which I was out with friends or running errans and become entirely stuck. I do have medication I can take before hand- the only problem- it causes severe memory loss. An extreme downside, when I typically only leave to attend doctors appointments or be with friends.
After exaughsting the Peoria Methodist hospital system, they have done everything they can, and have been very supportive. Sadly, my condition goes beyond what my doctors have experience to treat. My options are continuing to try to enroll in Rutximab and Low Dose Neltrexone medical trials, and requesting appointments with doctors around the country.
I have exaughsted my exaughstion trying to find a way to make funds to do this, and my parents have my sister's four girls to take care of, as well as my 21 year old sister Sarah in college. (Not to mention all my past school loans and medical expenses thus far).
The oldest of the four girls is already a freshmen in highschool. My parents stress through these situations has driven me to levels of guilt and shame that take enormous effort to keep down. The heartbreak is still there though.
I really wanted to work hard, do my best, and be able to support myself and those close to me. After attempts to do illustration/article freelance, cash in on old clothes, filling out surveys, selling old photos, trying to create work for Etsy, developing website ideas for passive income, Any job that does not require legs/showering for/showing up consistently, and starting the SSI application process--
I think that if I had the energy of a healthy person I'd be getting somewhere. (Lol).
There's a lot of scheming, pushing myself, and being mindful of all I can everyday, especially if it's a day where I'm finding it difficult to get to the bathroom, the most difficult days send my anxiety into frantic planning mode-Much of the time making things pysically and emotionally worse.
I have a very loving best friend, his name is Brenton. He will be moving to Vancouver, Washington this fall, and for the past 3 months we have been trying to come up with ways to make it possible for myself to join him in December. There are many more ME/CFS specialist near Vancouver, and many of the best clinics and research facilities are located out west (Essientially all of them). The top being the Bateman Horne Clinic in Salt Lake City.
I truely belive that if I were to break away from home that I would be able to do better. (The parental's are very much in agreement). Brenton has been working extra to save up, so that he may provide some support to us both. Taking odd jobs, and providing me with opportunities for odd jobs that I can doing with without over-exerting myself.
I do not want my burden to fall on anyone else more than it has to. But I really want to be in a place where I can focus on my health and work with it. Some how being in your family's home makes this difficult, especially when you're down in a basement bedroom all day. There's so many people to take care of, and health issues are not exclusive to one member.
Absolutely any help is very much appreciated. You can ask for commisions of any kind or go check out my Go-Fund-Me Account and make a small donation. Please know your not just helping me, but my entire family.
Valuing and utilizing what has been given to me, has become the only way to survive and keep goingwww.gofundme.com/livingwithCFS…