It has been close to 25 years since I was diagnosed with Multiple Sclerosis. Over the years, I have learned so much that I wish I didn’t know. Living with Multiple Sclerosis comes with too many unexpected and unpredictable issues. Still, these are all issues one must learn to accept and deal with because they are not going away. I remember when I was diagnosed, I thought my entire world was coming to an end. I only went to an eye doctor because I had lost vision in my left eye. Imagine beginning an appointment, preparing yourself to be blind in one eye, but leaving the doctor’s office after being told it was believed you had an incurable illness, and you were to get an MRI to confirm. Of course, I did not want to be blind, but I surely never expected or wanted Multiple Sclerosis.
Over all the years living with Multiple Sclerosis, one thing I have become very well acquainted with is pain! My relationship with pain is not friendly or welcomed, but unfortunately, it is very close. I would almost say my relationship with pain is too close, but also one that will never end. Of course, the pain is there to welcome me to a new day, first thing in the morning, and stays there letting me know I have not escaped it. Unfortunately, my relationship with pain gets more intense in the evenings and tries to interrupt the sleep I need to recover from the day. If there is ever a time during the day when I think the pain has moved on, it abruptly reminds me that it is here to stay, no matter what I do, and the pain is not to be ignored.
One of the most frustrating things about MS pain is that it is never straightforward. It rarely matches what I did the previous day, and it definitely does not follow any specific schedule. I can go to bed feeling one way, and wake up feeling something entirely different, from aching in ways I did not know were possible to feeling a way that does not make sense. I have tried placing the blame on anything but the MS, but logically, the pain is due to the MS.
The problem that makes it harder is never just the pain; it is more about finding out how to live around and through it. I must take time to decide things like how bad it is today, what I can sensibly do, and whether there is anything worth pushing myself to do or not. There is always that silent fatigue lurking around that comes along with contentiously negotiating with my body.
There once was a time when I thought I had the power to control the pain, ignore the pain I was feeling, or, at the very least, I would downplay the intensity of the pain. Often, I would pretend I was not feeling any pain because I did not want to sound overly dramatic or like a reality. After all, none of that helped me feel any better. This may not be a huge surprise, but that did not work because I only felt more exhausted and extremely frustrated. Considering what I have learned so much, I try to listen to what my body is saying. If my body needs rest, I try to stop debating what my body needs and rest as much as I can. Through too much debate and resistance, I learned how to adjust my expectations and stop punishing myself for what was not achieved. I learned that some things are not as important as I think they are and can wait for another day.
Honestly, this does not mean I have made peace with my constant pain because I continue getting frustrated. I do get irritated when my pain slows me down and does not allow me to do certain things. I do miss the version of myself I was before MS, a time when my body did not require too much thought and preparation. Of course, I have learned that pushing and punishing myself only adds more stress, which causes more pain, and I do not need any additional pain and discomfort.
Living with constant pain has reshaped my views about strength because it is not pretending everything is okay. Strength involves admitting the pain but not surrendering to it. It means saying when you hurt and continue anyway, but at a different and possibly slower pace. It sometimes takes finding small things, even if they do not make everything completely better. Small things that have helped me include heating pads, sitting when it hurts too much to stand, standing when sitting hurts, warm bubble baths, cooling packs, or finding new things that help the pain.
I have lived with MS-related body pain for more than half of my life, and it has made me more upfront, patient, and far less interested in what other people may think. MS is not seen or felt by others, but I know how I feel and what my body can handle, and I do not have to explain myself to everyone. Unfortunately, pain is a constant part of my life, and it is my reality. I can only hope and dream of a day in my future, pain, and I will not have a relationship, and we can end it, and part ways. Even if this relationship never has a chance of separating, a girl can dream!
It has been challenging for me to write anything because I have been having vision issues. These issues have been going on since I had pink eye, but the blurry vision is in both of my eyes. Lately, even with my glasses on, my vision is still blurry. If I had to make an educated guess, I might say it was due to optic neuritis, but I do not want to accept this because it is terrifying. I hope it has more to do with fatigue and nothing to do with optic neuritis, but we will see.
Thank you for visiting my site today. I apologize that this post was so long, but I had a lot to say about MS-related pain. Of course, I do not hope you can relate to any of this, but if you do, please know you are not alone. I like to refer to today as Friday Eve because it sounds more optimistic, and I hope you are having a good week. As always, I look forward to reading any comments you have and will respond as quickly as possible. Please never forget I am always sending y’all LOTS of love
, comfort, support, and MANY positive vibes
!
Always, Alyssa
Source: fightmsdaily.wordpress.com