Educating Yourself...
Written October 18, 2018
I can still remember moments during the long 4 years of tests and diagnosis's that I relied on the internet for my symptom checker. It felt like I would get some answer online and then go to a doctor and they confirm my symptoms. I have learned now that you need to be careful reading somethings online because the information is not always correct. Be specific and ask for credited sources that will have important stuff.
I have always been an individual that researched everything possible before making a big decision such as cars, living situations, specific foods etc. After receiving my MS diagnosis, I decided at that point (burning desire) I would put my studies to work and learn about the history of what would be my life. I knew nothing about the autoimmune disease or what to expect. It was like walking into a wall and trying to figure out where I took a wrong turn. Does anyone else feel like that at times?!
Since January, I have been to the local library several times a month looking for books about MS, exercise videos, cookbooks, to even books about how to boost your brain. I have signed up for majority of the websites linked to MS to ensure that I do not miss a beat about new treatment or ideas on how to better my lifestyle. I even have attended a few free MS events that have been such a great help not only for myself but for my family members as well.
I have learned SO many different medical terms in the past few months and slowly putting my feelings and sensations into categories. I can honestly say I am impressed with doctors and their ability to memorize all of the technical terms and put them together to finally make a diagnosis. I thought that I would take a few definitions that I have recently learned and share them with you in hopes of giving you a view of what many of us warriors may experience.
FIRST: Clarification on a statement that I made on my last post. Last night at an event called TalkMS I learned that MS is never in remission. Even though my scans show no activity in the brain or spine my body is still struggling to maintain homeostasis (Big word huh?) For Example: Some people may show their struggles with MS by using a cane or device, but their scans do not show any activity. Others may have scans with multiple areas of concern, but they are able to run marathons, hike, swim etc. We may not be able to track down any activity in tests, but our bodies could still be changing.
Modified Drug Treatments are meant to help prevent further progression in our disease by slowing things down, but it does not stop it. I know that sounds like I got the short end of the stick RIGHT?! In reality, I feel like I got the luck of the draw because I did not hesitate to start treatment and be proactive about my health. I have been given the opportunity to learn how to grow as an individual, become a problem solver and be blessed with SO many individuals in my life. I may have days of struggle with pain levels and not have the energy to get up and workout but I don't let that stop me from making the best of the moments.
Now that I clarified that, I have two new words and definitions that I thought I would share with you. These might explain a few of the things that I experience on a daily basis.
Dysesthesias: Numbness is a common symptom for many of us warriors. This word explains the odd feelings that go with our numbness. It is a burning, "creepy-crawly" sensation on the skin. The colder weather has definitely taken a toll on my legs and ankles. I literally have 2 to 3 layers of clothes. Doing so I hope to keep my legs, feet and ankles warm. Beau and I even went and bought leg warmers to put around my ankles because I have been experiencing the burning (felt like sitting too close to the fireplace) and my ankles do not feel stable. I often wear a wrap on my ankles for pressure which alleviates the burning and stabilizes my ankles so I can walk. Another example: there are days when I can be walking around and the next minute, I have an itch that I have to continue to scratch until the creepy crawly feeling goes away. Did I say that right? An itch to scratch or was it a scratch to itch? I usually get those mixed up.
Spasticity: Normally some muscles will contract while some relax when we are moving. In my case: there is a disruption in my central nervous system that results in a simultaneous (both) contraction with and without movement. Sometimes for me it can feel like a major Charlie horse, but I cannot walk, and I scream at the top of my lungs due to the pain levels. Especially my left leg, I struggle with this feeling majority of the time. It is worse at night when I am trying to relax and sleep. It keeps me up until my body just says okay you can get an hour of sleep. To combat this issue in my legs, I constantly exercise, stretch and move around as much as possible. Sometimes it is easier to manage the pain when I am moving around than when I am sedentary.
I find that these two definitions explain majority of my issues other than fatigue and just aches like I did too much of a workout. I will continue to fill my bucket of knowledge and use this to educate those around me. I may not be an expert, but I will gain the knowledge needed to better understand my body. They say that listening to your body is one of the best things you can do when it comes to self-care. I can honestly say that I have moments where I wish I wasn't dealing with pain on a daily basis, but I have been given this challenge because I can handle it. If we put our mind to it, we can conquer what is in front of us. It will take time, but it can happen.
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