I was one of those people who couldn't remember the last time I had so much as a cold. I must confess that I felt superior as my coworkers sniffled and coughed their way through winter while my immune system of steel protected me from all of the cooties that floated around the office.
In June my luck ran out. When I say it ran out it got on a plane and left the country. I have a neuromuscular disease called spinal muscular atrophy. It is a progressive disease that has left me a quadrapelegic. Because of it my chest muscles have weakened to the point but I do not have the ability to cough.
It started as any cold would start, the sore throat and the annoying cough. By the end of the day my fever was over 40 degrees and I was sicker than I remember. I ended up in the ICU that night where I remained for 14 days. I have no memory of showering, doing my hair or being taken to the ambulance. It may be thought of that taking time out to spend on my grooming was a bit odd. There was no way that I was going to the hospital with hairy legs, a girl still needs to look her best!
The first three nights we were not sure that I was going to survive. My fever raged on and I was too weak to clear the secretions that filled my chest. Life support was being considered as I was too weak to fight off the virus on my own. On the fourth day I began to improve. Life-threatening secretions still filled my chest but I was conscious and able to talk. It was at that point that they began bringing meals to my room which I sent away untouched. As this continued the medical staff began to ask questions. Many people with spinal muscular atrophy lose their ability to swallow. Eating become Becomes risky for many as the aspirate food into their lungs which turns into pneumonia. Given my unwillingness to eat they suspected that I was having difficulty swallowing. They recommended that I undergo a swallowing study. This is where they have an individual swallows things of varying texture while an x-ray follows the food going down to the stomach to ensure that it is not going in to the lungs. They also recommended that I had a surgery to implant a feeding tube into my abdomen. This set me into a place of fear and panic. My swallowing is just fine, but what I was doing wasn't. I finally hadto admit my dirty little secret. I was afraid that I had to let go of the one thing that gave me control. Before I ended up in the hospital I was restricting my food. If I went 72 hours without eating I felt very accomplished. It was either tell the truth or be force fed through a tube.
The next day when my doctor was doing rounds we discussed my lack of nutrition. I tearfully admitted how I've been restricting my food. It felt good to finally admit it. My loving husband knew that I did not eat enough but he didn't know why. I refused the swallowing study as I did not want to be forced to put anything into my stomach. As I was malnourished and my potassium and phosphate levels were dangerously low I was fed TPN. TPN is a thick substance that a person is fed through an IV. I was receiving 700 cal a day. The thought of 700 cal being forced into my body against my will caused me huge anxiety. Although I was not fit to go home yet as I was still unable to clear my chest secretions I was told that I should be eating 1500 cal a day and 70 g of that should be protein.
By day 14 I was eating enough to allay their concern and was well enough to go home. For the first few days I ate well to appease my husband. Throughout my whole 14 days in the ICU he only left my side to go home and shower. I felt terrible for putting him through this. Eventually I returned to where I was most comfortable, restricting.
About two weeks after I was discharged from the hospital I had another high fever of around 40°. My loving husband rushed me back to the emergency room where I was diagnosed with the flu. My blood work showed that I was once again malnourished. Before being allowed to go home my potassium was once again replaced through an IV.
When we got home I was tired and weak. As I was getting ready for bed, I was sitting on the toilet I fainted falling to the floor. This resulted in a left femur fracture. Having had many broken bones in the past I immediately knew that I broke my leg. I had no desire to go back to the ER that night so my husband painfully lifted me into bed. The next day the pain was even more intense. The ambulance was called and I was once again taken into the hospital.
Although my leg was casted the pain and challenges with transferring forced me into bed for the entire summer. This left me more time than I needed to think and ruminate. It finally hit me, I came closer to death then I ever had before. I began to have a gripping panic attacks and flashbacks of being in the hospital. There were times that I was in so much pain that I wished I would've died. Even worse, I felt incredibly useless and like a huge burden. I was completely unable to do anything for myself. My husband was left with the unpleasant task of helping me with the bedpan.
I kept up-to-date on Facebook. Everyone I knew was either busy working or enjoying summer vacations. I had never felt more isolated or alone. The more alone I felt, the more the panic attacks gripped me. I was also hurt by people who I thought were close friends. Sadly I had never heard a word from people who I thought we were closest to me. This led me to question my self worth even further.
Along with being disappointed I was surprised and touched by the many people who reached out to me and those who came to visit me sitting on my bed with me catching me up on the latest news. Even with this, I felt alone. I was not able to participate in any of the joys of summer nor was I contributing anything to society.
I spent my time on Facebook living my life vicariously through others while feeling worthless and on the fringe of society. The panic attacks became worse.
I was finally able to leave my bed but I am still wearing a leg brace as the fracture that took place in July it's still not healed in November. I am still in a great deal of pain which forces me in my bed much more than I want to be. The extreme stress but my body was under caused me to lose most of my hair. A while back I had a panic attack that was so bad that I was forced to call 911. Not only did the paramedics provide me with Ativan to settle my panic attack they put me in touch with resources through Canadian mental health. I saw a psychiatrist on an emergency basis who not only provided me with an antidepressant and Xanax but a referral to see a psychologist in the community.
According to the orthopaedic surgeon that I see I have at least two more months before my leg is healed. In those two months I will try with assistance to get a hold of my eating disorder. I will try to put my panic attacks behind me. Most of all I will try to find myself again.
Welcome back to the world.
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