I’ve been writing and not writing. I’ve been experiencing and just existing. I have been sick and sicker. I’ve been living this life which is mine but is truly not the greatest. I always say that I have no known enemies, but I have one. It’s multiple sclerosis(MS). This shit is a true enemy and it is trying to kill, steal and destroy. It is trying to kill my livelihood, steal my peace and destroy my body. And this weekend, it is succeeding just a little. Not a lot. Feeling a little defeated, exhausted and beat up. I know I don’t talk about MS much but today, let’s talk about it. This is not a pity party. This is the realities of living day to day with an autoimmune disease. This is my reality. I don’t expect anyone to understand. Just be with me in this moment, if you can. If not, I get it. I don’t want to be in this moment. Lol.
So pretty much ever since my car was broken into, I have been struggling more than normal. My episodes/relapses/exacerbations are triggered by stress. That incident caused stress on top of stress. I adjust. I don’t think I have a choice, I mean do I? The way I walk, the way I conserve energy, all my movements and actions adjust to make it through the day successfully. I don’t allow the differences of actions to determine what I can and cannot do. Now my coworkers notice every fucking thing. It is like they have a microscope on me. It got to a point that they were going to call the doctor themselves to say that I was in a relapse. Or worse, my mom. Lol. I finally caved in and called my neurologist. He arranged for me to have a three day steroid infusion. Yes, it is as bad as it sounds. I dislike them immensely.
To break it down. I have a set appointment at an infusion center. The treatment involves a corticosteroid drip that takes about an hour to complete. I have to get poked each day with an infusion needle because I work in an office and it is more of a pain in the ass to leave it in for the three days. The treatment leaves a metallic taste in your mouth that is suppose to go away after a couple of hours. This treatment, not so much. This treatment literally has been the worse ever!!! Based on this treatment alone, I will not have another one unless I can’t walk, see or function in anyway that resembles my normal.
We tend to think that the medications that we are given is more of a help than a hindrance. Yes they all have their side effects. That is to be expected. But this right here is unexpected for me. I have had severely swollen ankles and legs since Thursday. Limited feeling in my feet since they are so swollen. I am actually walking worse than before the treatment. Brain fog and my food taste weird or no taste. My face is swollen as well but not as obvious as my legs. I feel like the Michelin man. I generally feel like shit. But guess what today is? It’s Sunday. So tomorrow is Monday. And that would be a work day. I am going to be at work bright and early at 8 am. This is my reality of living with MS.
I don’t want sympathy or pity, or any other emotion that is not uplifting. I’m just saying. Selma Blair, who was also diagnosed with MS, chronicles her journey with MS regularly. I know she does it because she has a bigger platform and can bring true awareness to this disease. I respect her willingness to share and enlighten. I, on the hand, just don’t like talking about it. I feel like what is it going to change. I am still going to have MS. I am still going to go through this life the way that I am destined to live it. I don’t know why I am even sharing today. Lol. I guess because it is different. It is a path that I have never been down before. It is kinda throwing me off.
The next few days I am just praying to get back to my normal. My ankles looking like ankles. My body moving in a way that I feel I have a small amount of control over. My brain being able to process all that is coming at it. Me being me. And if you would like to add your prayers, I will gladly accept and appreciate them. I hope that if you have been taking your health for granted and not doing what you are supposed to be doing, that this also gives you a kick in the ass. I have limited choices where my health is concerned. If your choices are your own, make the right ones. I ask sincerely for each and everyone of you to be well and whole. It matters. Love you all ❤!
Don’t have any idea what you are going through, but I’m rocking with you…. Prayers up!!!