When you are in the position that I am in, of suffering with a chronic illness, there are so many things that change in your life.
Before Chronic Illness
Life was at your disposal. Anything was possible. Wanted to bungee jump? You could. Want to run a marathon? Sure! Want to join the Military or the Police force? Go Ahead! Plans were simple, situations made sense, you could go out in the heat no matter what.
After Chronic Illness
Everything changes. Certain activities become impossible to do. It is hard to have the energy to get up and be productive on a daily basis. It goes on forever, chronic pain and chronic illness stays with you. You have to cancel plans regularly. People stop hanging out with you, because you always have to cancel on them. People tend to think you are faking your illness when they don’t understand what Chronic means.
Accepting the Chronic Illness
At one point in your journey, you have to accept the fact there are things you cannot control. You have to accept the fact that you hurt every day, you may have a good day here and there, but at any point it could change.
But the most important thing about Chronic Illness is.
It’s incredibly strange how life can play out. One moment it’s smooth sailing on open seas and then the next thing you know a hurricane hits you. The fact of the matter is, its not the big things that beat me down and drag me down. Its the persistent pressure of the unknown. Why do I have this condition? Why do I have pain daily? Why did she stop talking to me?
Questions, which quite frankly, I fathom will not be answered.
I stay confused, not understanding the reasons for many things. It eats away at me. I constantly blame myself, but is it really even my fault?
There are things I can control and things I cannot.
I am Tim. I’m 27 years old and my life is either interesting or a terrible sitcom being filmed by Fox. I have Recently decided to start this blog, to have a place for all my emotions and thoughts on life and to helpfully help someone. Also, I have noticed toxic habits forming from the use of social media as my emotional background, there is no need for that. There will be times this blog is filled with helpful information, to my opinions on movies, music, video games, maybe even politics. Some personal fiction writing and even some ranting and raving from time to time!
In the past, I have been known to do quite a number of different skills, hobbies and jobs. Everything from being a Pseudo-Photographer, to playing in a small local band(a few), to travelling the South East doing mission work. I have sold ladies shoes and made boutique coffee, while attending college full time. I was an actor for multiple productions. I have traveled through the country, making sure to witness and take in every bit of culture that I can. I have pumped gas for a living, I have been unemployed and pursued creative skills. I have a two year degree as a graphic designer, that I once have not been able to use. Last, but not least, I joined the Army at the age of 24.
With all the experience and all the lessons and mistakes that I have learned; I am unable to wrap my mind around 1 small factor.
I have a brain condition called, Chiari Malformation.
Never heard of it? That’s okay!
SO I am going to take a second to explain what this crazy Condition is.
Chiari malformation (kee-AH-ree mal-for-MAY-shun) is a condition in which brain tissue extends into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward
Now when I first found about my condition it was in 2013. I was at the time serving in the Army National Guard. I was in basic training at the time. A physical assault from another Private during combat exercise, left me unconscious and with a concussion. (I’ll get into that more later) I was fortunate enough to have access to the imaging that I needed, Cat Scans and MRI’s. However sometimes the case is this condition can lay dormant for years.
Chiari malformation type I develops as the skull and brain are growing. As a result,signs and symptoms may not occur until late childhood or adulthood. The most commonpediatric form, called Chiari malformation type II, is present at birth (congenital)
Now what all this means, is that there certain fluids that run through your brain (CSF). Now when your head is misshaped, and no I don’t mean like the guy from the Goonies
Our heads look normal to the visible eye(Picture of deformed head) It’s inside where the issues are.
Now the craziest thing, is the fact that that symptoms can vary by every single case. Also, someone can be asymptomatic, but suffer a trauma of some sort i.e:Car accident, Physical Assault, or any hit on the head.
I know the symptoms I had were, Dizziness, blurred and double vision, weakness in extremities, confusion, memory fog, severe head pain(NOT A TYPICAL HEADACHE OR MIGRAINE)
Now, the part that is hardest for my self to swallow and countless others, is this one detail….
THERE IS NO CURE!
Crazy right! However there are some ways to manage it and treat this condition. However, the main way to treat Chiari, is by having BRAIN SURGERY. Brain surgery is not cheap, it is not a guaranteed success rate, and the recovery time from brain surgery can go anywhere from one to 5 years, all depending on the person. What is even worse, is that I know of numerous people who had to have a follow up, or multiple surgeries.
The reason for that is, like I said at the beginning, Chiari is still Uncommon if not Rare. There are so many surgeons who either, are not educated in Chiari or the type of surgery, or just will not help the patient.
BUT WAIT THERE’S MORE!
People who have Chiari, typically have multiple different conditions
Ehlers-Danlos syndrome (EDS)
Those are just a few that I know of or I have. Now there are many other conditions as well. I do recognize this and I am trying to educate my self as much as possible as well. So please do not burn me at the stake!
How Rare is Chiari Really?
Studies have shown the incidence of this tonsillar ectopia may be as high as .5%-.7% of the general population. However, this does not mean that all these people have Chiari. Estimates for the number of people with true Chiari range as high as 500,000 in the United States. A more conservative estimate of 300,000 would mean that 1 in 1,000 people have Chiari, or 0.1% of the population.
SO….It is still fairly rare. However, that is due to the lack of awareness for Chiari
WE ARE NOT FAKING ANYTHING
It’s sad that I even need to write that, however its so unnerving the amount people will accuse me or someone with an invisible condition(A condition that does not have a physical appearance) of faking it for attention or we are just too lazy to work.
A Typical Day
Now, this is my typical day, it will be similar to a lot of others who suffer from this condition. Every morning when I wake up, which is usually due to a headache; I moan and groan for awhile until I am finally able to get out of bed. First thing in the morning, walking can be the most difficult thing for me. I’m dizzy, my feet are numb and every bit of my body has shooting pain. Throughout the day, I relax for the most part, not because I don’t want to do anything, but because I feel like I cant. If I exert to much physical energy I could have a seizure. So i lay around. Might do the dishes if I can stand for more than 5 mins. This is just my good days. I have time where I just cant leave bed or sitting up is too much pain. Some people have far worse days then myself.
WE DID NOT ASK FOR THIS
As is with any condition, no one wishes to have it. If you know someone that has this condition or think they may, please support them. Life after a diagnoses of Chiari Malformation is life changing. It will rip worlds apart. Don’t make things harder for the people you love. A lot of the time we suffer from depression and anxiety issues because we are not able to process information the way we are use to.
Thank you everyone for reading. I will be back soon!
Please feel free, to contact me with any questions, comments, criticism or even to share with me your story!
Stay Blessed Friends,
I have listed the sites I pulled my information and I will post a few more that can give more insight.