There are questions in my life that have gone unanswered. I can almost bet you feel the same way. For the past seven years, I have struggled with some health issues, and until recently, I have had a hard time getting anyone to listen to me. This includes both loved ones and doctors. I can still remember where I was when my symptoms first started. I can also remember how my husband reacted when I told him about it. I don’t think people are intentionally insensitive, they just fear what they don’t understand.
Beginning the Journey of Pain…Alone
My husband and I raised 5 kids ages 2 to 15 early on in our relationship. We had to escape to ourselves occasionally. We had a nice building where friends could come hang out, and I could paint, he could weld, and the music could blare. I started getting cramps in my abdomen and chest. They would come and go. Shortly after, I was at Wal-Mart, doing some shopping and my feet felt like they were on fire. I was scared and didn’t know what was happening to me. Then, the panic attacks began. I had my first one on my daughter’s birthday. I knew for sure I was having a heart attack. The rescue squad came to my house and told me I was fine. They did offer to take me to a hospital an hour away. I decided to stay, partly because I was embarrassed. I don’t think they intentionally wanted to make me feel like an idiot, but they did. They weren’t the only ones who told me it was in my head.
My doctor flat out told me it was. He told me the cramps were because of my anxiety, and the foot pain was athletes’ foot. Yeah, athletes’ foot. I should have found a new doctor then, but both my mom and father in law saw this doctor and, really liked him. I stayed with him for three years. Finally, he just up and left, and I had to find a new doctor. In those three years my symptoms progressed and got worse and worse. More symptoms began adding up. It got to where my feet would swell, burn, tingle, and eventually my toes quit moving. I couldn’t sleep because of the pain. I had a very difficult time holding down a job; I couldn’t stand and walk for long periods of time. This cost considerable problems in the house hold.
I had gotten to where I couldn’t stand heat, and sweat just poured. I was asked frequently if I was okay. All I could say was “I am hot natured.” Throughout my entire life, I was a barefootin’ girl. Now, nothing could touch my feet; the slightest touch sent pain up my legs and spine. Explaining the exhaustion to people was so irritating. It remains one of the harder things to explain to people. I was in my thirties then, and I got so tired of hearing, “you are too young for this” Well, yeah, I know, most people my age are active in so many more ways. I would love to have the energy to go hiking again, or take a long trip without my toe erupting with infection.
New Doctor, New Diagnosis
I was excited to meet my new doctor. She was, and still is a sweetheart. She listens to me and sends me to specialist she feels can give me answers. Unfortunately, the first neurologist I saw was a hateful lady who spent five minutes in the room with me. They ran a nerve conduction study on my lower legs. This isn’t supposed to be a painful exam, but it was for me. The results said I have peripheral neuropathy. Yay! A diagnosis, a name to tell me what’s wrong. I tried asking questions, because I didn’t know what that meant. The neurologist said, it has many causes, I was a fall risk, and someday I would be in a wheel chair. No joke. She actually told me this.
I quit seeing her. My family doctor prescribed my medicines, a muscle relaxer and something for the neuropathy. The muscle relaxers actually helped. But I spent too much time and money on other pills that didn’t work. Over the past four years, my symptoms have continued and worsened. I have added some on as well. Thankfully a new neurologist has come aboard, and she listens. My newest symptoms, include extreme constipation, the muscle cramps and spasms have worsened. I have tremors now. One morning they were so bad I was afraid I was having a seizure. Now I notice my hands shaking. My coordination has always been off. I am clumsy, but I drop things I shouldn’t. I can’t hold onto things long or my hands go numb. Words are getting difficult to think of. Everyone has the occasional blonde moment; my moments are coming more frequently. When I can’t think of the simplest name or word, I usually change the subject if possible so nobody picks up on it.
My neurologist is sending me for a MRI to check for Multiple Sclerosis. I am not surprised, nor am I afraid. It’s not that I want to have MS, but I have been dredging through this for seven long years. It would be great to finally have an accurate diagnosis, and medicine to relieve these symptoms. So, yes, I hope they find something. My quality of life has changed so dramatically. I can put a smile on and fake it most times. Most people with an invisible illness can.
Now What? Hurry up and Wait
Since speaking with my doctor, I have Googled everything I can find about M.S. I knew some about it from working with patients with the disease. I still had and have questions. I am being as patient as possible. I am writing about this because people don’t want to listen. People I care for dearly make me feel bad by saying little things about having faith to be healed, and don’t let Google diagnose you. I get it, both phrases. I get I am too young, and I also understand I have to fight back. It would just be so much easier to fight if I could openly speak my mind like I just did. It would be easier to fight if people could take the time to try and understand I am not lazy; I am just exhausted and need a break. I need a break from the judging, and the assumptions. It’s not in my head, something is wrong.