Last weekend was amazing. It was a beautiful Saturday. The “not a cloud in the sky with abundant sunshine” kind of beautiful. It is also peak fall foliage right now here in Kentucky. Every tree is putting on a show and last weekend was the main event. If I did not have multiple sclerosis, I would have gotten up before the sun and driven to a trailhead to watch it rise. The beauty of that golden ball coming up through the red and yellow leaves is always worth being the person who is early to bed and early to rise. After sunrise, I would have spent the next few hours meandering along trails through the freshly fallen leaves. My only care in the world would be making sure I was back to my car before nightfall, but just in case, there would be a flashlight in my backpack to guide me.
But, I do have MS and that unfortunate reality struck me extremely hard. It usually does when the weather is nice. There would be no trailhead sunrise or meandering through the woods. Instead, I would not leave the house. I would sit on the floor of my bathroom and cry instead of sitting on a rock by a stream watching leaves fall like rain around me. I would have one anxiety attack after another. I would wait for phone calls from friends that would not come because, unlike me, they can still hike and bike as much as they want. And, that is exactly what they did instead of sitting on the floor and watching their friend cry. I do not blame them one bit for it.
I have gone through countless weekends like this since my diagnosis. I know it is not good for me and I have been doing what I can to improve my mental health. I see a psychiatrist and do the homework he assigns me. I meditate and read the books he suggests. I take medications for my anxiety. I still have plenty of issues. I have only taken small baby steps toward a greater goal, but the baby steps have allowed me some freedom from having days like I had last weekend.
As I was standing in the kitchen, chopping vegetables with tears running down my cheeks, I was trying to make sense of what was happening to me. There had been other nice weather weekends recently and they had not affected me this badly. Saturday I was able to push through. I forced myself to get moving and do a short workout. I took a hot shower. I cooked. I made myself read at least a chapter in a book. It was all fruitless. I could not concentrate. My mind and emotions were too erratic to focus on anything.
Sunday started off with a long dog walk and cloudy skies. I was feeling better, but unfortunately, it did not last. It was the kind of gloomy outside I find myself looking forward to these days but again came the same building panic and anxiety. There would be no workout or books to read this day. It was going to be a long struggle. I floundered through my day. I turned off my phone and shrank further into myself. I know feeling like this has the potential to make my MS worse in the long run. I feel confident stress was the trigger for my MS when it began and it continues to be a trigger for worsening symptoms. I wanted to feel better but had no motivation or energy to take steps toward it.
It took until Monday for me to figure it out. It has happened before. I should have known. I was in my Ocrevus crap gap. My last infusion had been on May 20th. I was five weeks out from the date of what would be my next dose. Five weeks is consistent with what I have felt every time between infusions.
The crap gap is the period of time between infusions when you have worsening symptoms and feel like crap. I have talked a lot about it in my last few posts and realized it may be worth a post itself. There is no scientific or medical explanation for it, yet, numerous people on Ocrevus report it. I myself have been through it a few times and can say with confidence it does exist.
For me, the crap gap means a lot more problems with mobility. On good days I can walk short distances with little issues. The further I walk, the worse my symptoms get. My foot drop worsens, my knee starts buckling and giving out, and my hip will not flex enough to raise my foot from the ground. When I am in my crap gap, the distance I am able to walk gets significantly shorter before my symptoms go into maximum overdrive.
The least tolerable part of the crap gap for me is the mental damage it inflicts. My depression and anxiety go through the roof. All it takes is one wrong thought or idea and I am down a rabbit hole of thinking about everything wrong in my life. Things I seem to have gotten a handle on over the last few months creep back into the forefront of my mind to torture me. Knowing that the intensity of your emotions is mostly due to the timing of your medications does absolutely nothing to help you feel better though it might help ease others’ worry when you can explain why you are uncontrollable.
The crap gap is one of the reasons I am very happy to be saying goodbye to Ocrevus. My Kesimpta journey begins tonight. I have read about people experiencing something similar when it nears time for their next injection. If I only have to endure difficulties for days instead of weeks, I think that is a good trade-off. I am actually looking forward to what this weekend holds. I will have updates after the weekend on how my first injection goes.
Are you on Kesimpta or Ocrevus? Have you experienced the crap gap yourself? Would love to hear what it is like for you and what tips you have for pulling through it.
(M)y (S)tory 