Back To The Drawing Board...
WRITTEN 6/30/24
Reality always likes to keep me in check. Just when I feel like I am on top of the world and living life to the fullest MS always comes along to say, “Na Na Boo Boo I Tricked You”. It’s like I missed reading the fine print on a contract that my body agreed to.
Recently, I have connected with several kind and supportive friends who have reminded me that it’s okay to be honest and say out loud “I have MS”. I kind of stepped down from my advocating and educating about MS because I started to feel like a broken record. I just wanted to feel like one of the guys in the group. Walk in and walk out with my head held high. Without these wonderful individuals being so supportive and willing to listen to me as I explain my situation things would be much worse. I have been vulnerable and all they are doing is lending a shoulder. Letting me know it’s okay and that I am not alone. With their help, they have given me the strength and confidence to step back up to the plate so I can get my head in the game. In the past month a few of my family members have seen me at my worst. It’s heartbreaking and somewhat depressing for loved ones to see your struggles. I have done so well to hide my grief and pain. I had a family member ask me “How do you do it?” I point to my little boy. That is my reason. I want to be there for him. He doesn’t understand the reason why mom needs a break at times. He does know that his mom loves him and will always be there for him. If he can learn and grow so can I.
I have been asked several times “How can you stay so positive and supportive? “I have sat down to think about this quite frequently. Being positive and encouraging doesn’t mean I am always happy. I too, deal with sadness, anxiety, anger, or wondering if I’m a burden, etc. I frequently get upset knowing that my life is not the same as it was 7 years ago. I miss being able to jump out of bed and quickly put on shoes for a morning run. Dance without a spasm or spend a part of my day not in pain. I am given challenges daily, but I work hard to keep myself in check, so others don’t have to be alone or afraid. I take the time to accept and face the emotions I am feeling. If I do not allow myself to experience the emotions, then I cannot feel or appreciate the joyful moments in my life. I am trying so hard to not make it a “woe me” situation. It's not all about me. This disease affects my loved ones as well. I can't count how many times I have been a heated conversation with loved ones over putting myself first. I sometimes feel like I will miss out on something if I take a moment to myself. I am capable of being able to express myself or finish a task. I CAN do it my way and at my timeline. I know that my stubbornness can be the worst.
March 2024 was another successful infusion. Best part we got released an hour earlier because I was able to tolerate the faster rate of medication. It was a huge relief and felt like a huge improvement since day one in 2021. I was able to recover a little faster but dealt with spasms, nausea and rashes this round. My 6-month PT session was a huge success and at this time I was feeling very strong. I was retested and even challenged more. My retest scores were a huge improvement from day one. Best part was that I walked out of the session with the more exercises that we adapted to best accommodate my body.
In May of 2024, I challenged myself for the first time in several years. I was dead set on running a 5k in under 1 hour. My supportive husband joined me and stuck by my side the entire time. I wore my Xtern AFO brace the entire time and crossed the finish line knowing that I can STILL do this. The consistent working out at the gym helped a ton and prepared me for the long run. I even went for a hike with my family and quickly learned that I need to be more proactive about carrying supplies such as zip ties in our bag. We found out that once the attachment broke on my Xtern Brace broke I could no longer continue hiking up the small incline. My leg went into a lock down and started to spasm. My mom and son tried making walking sticks for me which was so kind. My husband ran quickly to the car to get the zip tie to fix the attachment and then we were off on a walk once again. It was as if nothing had happened.
The start of June 2024 was an entirely different story. I started to deal with my tonic spasms in my leg more often. They were becoming a daily problem. My workouts started to slow down due to pain levels and difficulty walking. I often relied on others to help drive my son around because my right leg is affected the most. Safety first. I experienced my first time flying and going through security with my Xtern AFO brace and a cane. The looks on many of the other people was overwhelming but I quickly learned to keep my head up high and walk or stumble proudly with a smile. I struggled to walk but the security was helpful and made the experience enjoyable even though I was a little afraid. I had to be brave so my 4-year-old son would be brave too for his first set of flights. He rocked it and loved every minute of it.
End of June 2024 I met with my MS specialist to find myself back at the drawing board. My tonic spasms have been frequent and affecting my ability to participate in the simplest daily activities. My leg has protested against the Xtern brace, and my cane is my newest walking partner. I honestly dislike having to use either of the assistive devices. We are racking our brains trying to figure out what could have triggered the flare up. Nothing seems to be showing up on my symptom or activity tracker. My muscle relaxers are not providing enough pain relief. The spasticity in my legs is elevated. Our next attempt is epilepsy medication. Some have been proven to help relieve spasms along with not affecting the cognitive function of the brain and body. My doctor has been very helpful and reassured me that the trial-and-error process is pretty common.
I knew that I got way too comfortable using the Xtern brace and seeing positive results way too soon. My body adapts and adjusts to changes quickly which makes it hard to feel like we have found a solution. We are keeping our fingers crossed that we could find something to help with the pain. I am trying all that I can before we have to look at something else more invasive like Botox shots. Which at this point my doctor isn't sure would help because we don't know which muscles to target since the entire leg is involved in the shaking dance.
There you have it folks. I have hit bottom once again but slowly gaining strength. I am taking it slow, adding PT exercises to my routine again. There is one thing I have learned from this chronic autoimmune disease. Don’t be afraid to ask for help. It takes a lot to let others in and see what happens but in the end, their companionship can be the best medicine without the cost of a penny.
I am motivated to improve my health even when there is fear of the unknown. Through the energy of my preschooler, I am encouraged to hug more, smile frequently and enjoy every moment in the present. Things will turn around once again. I just know it!
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