As far back as I can remember, and that's a long way, I've always been a klutz. Even as I child I tripped over my own feet or things that weren't there. My hands felt like they were constantly covered in butter. I couldn't hold on to anything. My mother was not, is not, a kind person and was constantly reprimanding me for all the broken dishes, glasses, skinned knees, elbows and hands. As I look back I'm surprised I made it to 40 before having my first broken bone.
I was born in my idea of heaven, Key West, Florida. My father was a shrimper and later worked for oil companies, therefore, I always lived on the Gulf Coast until 1979. Though a klutz, always plagued by what my mother claimed to be a "nervous stomach" (this I didn't understand for I was rarely nervous), suffering migraine from age 10, and often awaking in mysterious pain that I learned to ignore simply due to lack of care and sympathy, I was very active and something of a natural adrenaline junkie.
After leaving the Gulf for the Atlantic Coast I met the man who was to later become my husband. In 1980 he contracted mono (Epstein Barr Virus) and though I should have as well I had no symptoms. However, as I look back this seems to be a turning point in my life. Gone was the person who greeted the day by bounding out of bed and turning on the rock station on the radio. I no longer rode my bike instead of driving. My mother was constantly telling me that I looked "rough". Her way of implying that I was either involved in drinking or drugs. I would go for days exhausted, then it would be fine for several months. Fine, but not like I used to be.
I married and for the first time I moved away from the coast and to a place where I saw snow. Not much snow, but to someone who had always live on a southern beach it was snow. It was also horrible. I told my new husband that Dante's depiction of Hell as a fire pit was wrong. Hell was cold, ice, snow, a frozen wasteland. I was horribly sick. My new husband was unsympathetic. We had moved for him to complete his bachelors degree. He said I was being foolish. You see, cold does not hurt, does not make you itch, is not hard to breath and what he said was truth. Spring came and I was fine, summer came and I felt great, fall came and I got tired, winter came and I felt sick. Too bad, you don't have a fever, stop acting like a baby, go to work.
I was a good wife, which means I was a door mat. I worked and supported my husband as he got first his bachelors, then he moved me further north to take a scholarship for his masters. Then after his masters he had to have his Ph.D. All this time I worked, took night classes, raised our daughter, took care of our home, and got sicker. But with no one who really validated my concerns not much attention was given to my fleeting ailments. My doctors in Nashville where just starting it put the prices together when husband lost his scholarship and took a job in Washington State (can you say self centered) and I followed (can you say idiot). I moved to the state with the highest rate of Multiple Sclerosis in the country in 1993.
My health went down the toilet. I told my husband it was his turn to support the family but the cost of living was so much higher here that he was unable to and I was forced to find a job. I was furious. I had left a career in banking in which I had worked my way up the ladder and there was no equivalent here. I went from making $40K a year to $10 per hour with no benefits. My husband was sick and tired of me being sick and tired. I was an embarrassment to him and he began an affair with the secretary in the department in which he worked. (Can you say cliché?) I was furious, instead I was told I was depressed because I needed to sleep so much. My migraines where getting worse and I was told it was anxiety. I was throwing up all the time and I was told I was doing it to get attention.
I divorced my husband and I now know that I had a flare in the process. He hid all our money and I lost everything I had worked for all those years. If I had been well this never would have happened. I was told by my GP that I needed to see a mental health professional. I spent the next 10 years on and off every psychiatric medication in the book. Diagnosed with every mental health disorder in the book. I kept asking how they could make these diagnoses without running any test, blood tests, MRIs. I was told not to question them, they where the professionals, they knew what they where doing.
In 2008 I feel down a flight of stairs and hit my forehead on a solid wood door. My GP sent me over to the hospital for a CT scan and a "shadow" was found on my brain. I had a concussion. Later he decided I should have a lumbar punch. I was told everything was fine. My question was "I don't think everything is fine. You found a shadow on my brain and that's not fine. I want to know why I have that shadow." I was told not to get worked up about it, it was probably nothing, just something on the film. I wanted it checked again but was told it was unnecessary. You see, I was being unreasonable for I had a history of attention seeking.
From 12/2010 to 3/2011 I could barely get out of bed. I was accused of trying to commit suicide because I had lost so much weight. I spent 9 days in a physiatrist ward and finally realized that in order to get out I had to tell them what they wanted to hear, not what had and was really happening to me.
Summer came and I felt much better but fall came and I started feeling awful again. A few days before Thanksgiving I had a strange headache and my left side went numb. I thought I was having a stroke and hated that once again I was going to the ER. By the grace of God alone there was a new doctor on the floor that I had never seen. I told her what was happening, I told her about the shadow found in 2008. She did another CT. The shadow was larger. In tears I begged her to please not ignore me, please help me. She gently took my hand and apologized for my previous care. She arranged for me to be transported to Virginia Mason Hospital in Seattle. After 3 days of extensive test I was sent home with an appointment set for the next week.
On 12/1/12 I received my diagnosis with something similar to relief. Finally, I would be listened to. Finally, a valid reason for why I feel so bad.
The bummer is that I though I would be given a pill to make me feel better. I didn't realize that wasn't the case. I'm trying desperately to get my insurance to cover Provigil. The fatigue is just too much to handle sometimes, the lack of motivation. During the winter I feel like a bear that goes into hibernation. All I want to so is sleep. It's difficult to escape those long years of the rhetoric of "You're sleeping your life away" "You're depressed you need to get up and get outside" "It doesn't hurt to breathe cold air, go outside for at least an hour a day no matter what" and my favorite ""Never take a nap".
My dream beyond a world free of MS ... Leaving this horrid state of incessant cold. However, that takes money and to make money you need energy. The rest of my dream ... I am a person with Multiple Sclerosis who has lost my family, it has indeed killed my connections. I hear that happens to a lot of us. Why have just an online community, why not have a real, physical community. Something similar to a retirement community for people with MS. Wouldn't it be lovely? To have neighbors around you who know and understand how you feel? To foster closer connections.
..... Today's new friend is tomorrow's family .....