Anyone's story, including mine, is large enough to fill volumes. A life is an event that takes 0-122 years. When I think about everything that's happened to me MS is a small part of my life.
MS could still make up a volume or two all on its own . The only thing is that it is tied and twisted into other moments and events. It's why we use words like tapestry to describe a life. I like to use "forest." The story of MS in my forest. Severe fatigue started when I was 17 and went on with other symptoms here and there for four years. I pushed through the tired, because I had responsibilities. I had expectations to meet; and when you have MS, expectations is a monstrous weight.
In my early twenties I could walk fine one day but was dragging my vacuum around my house on my hands and knees the next and back to fine the next day. One day I could tie a student's shoes, and the next day my hands just wouldn't work. My primary care doctor said it was stress and told me to see a psychologist. He changed his tune after one ER trip I took. My left side had severe muscle fatigue, and it seemed an awful lot like a stroke. It wasn't, and I could hear the ER doctor yelling at my primary care doctor that it isn't "in her head" and to give me a referral to a neurologist.
The next day my primary care doctor refused, and I burst into tears. I demanded crutches and ways to get around. Oddly enough, that's what made him finally give me a referral to one of his friends; that visit was an exercise in futility.
I found Dr. Matthews. He was a brilliant diagnostician and neurologist. He had one request, whenever you have a symptom head into the office. He would step out into the hall between patients and have me walk, talk, move my hands, etc. I went in for a scheduled appointment, and I told Dr. Matthews that for the past two weeks I felt the best I had in years and years. He gave me my diagnosis and started talking betaseron. And I finally had a name for the awful symptoms; it was a relief to know exactly what I was fighting. I could move on and grieve.
I had a couple more weeks of feeling incredible. Then, morning sickness hit, and I found out I was pregnant with my first son. Over the next six years I was pregnant three more times and had two more sons. They took my diagnosis away, because I didn't have anymore issues. The only remaining symptom was my difficulties with memorizing dates, times, and numbers.
In March of 2016 I went to the ER, because I couldn't remember my name or birthday and was spastic and cramping up. I didn't have enough strength to move my arms, legs, and torso. They admitted me to the hospital, and they did a psych review. The psychologist told them that I was well adjusted and the neurologist said I was not. He told me that there was no way this was MS, and so did his colleague I saw the following week. It's stress. An urgent care doctor is the one who ordered an MRI. And lesions.
I could not find a dedicated and up-to-date neurologist in my city, Olympia, so I went to Seattle. They did a spinal tap and found activity in my fluid. So. MS. I take my disease seriously. I keep up-to-date on what's going on with MS. I love, love my MS support group here in Olympia and make it to meetings as often as possible. I got involved in activism. I've lobbied for MS and done similar work.
I don't participate in activism anymore though, because I have zero faith that people will ever be as important to the US government as money. And since major disease often leads to a lack of money, the US doesn't really care about me or other people like me. I wish this wasn't how I see things but it is. Federal agencies have absolutely no way to enforce ADA regulations. The only thing they can do is force communication with the offending entity. The offending entity can write "Dear ___________: Blah. Blah. Too bad. Buhbye" and that would be acceptable. And that is essentially what the offending party does when they get ADA complaints. Federal agencies know they don't have teeth. They refer people to the civil courts. Civil courts require money and we're back to lack of money and the US government not caring. Disability and ethnicity are an issue but they pale in comparison to poverty and living in the US.