Dealing with my MS has been exhausting lately. I’m frustrated that my body can’t do what it used to. I’m stressed about the cost of being chronically ill. I’m sad I’m missing out on living the life I want to live.
In August, I started my treatment. It’s an infusion therapy that takes about 5 hours from start to finish. First there are the pre-meds (steroids and allergy meds), then the disease modifying therapy, and then the hour of saline and observation. The science behind the treatment is well beyond my understanding, but basically, it attacks a protein on your B cells. If left alone, that protein damages nerves, resulting in MS symptoms.
The whole thing was around a 3 week process. Two infusions, the two week wait in between, and the post infusion side effects. Moving forward, ill have one infusion every 6 months for the foreseeable future.
My MS is considered “unremarkable”. Clinically, thats true. But living with it every day, is anything but “unremarkable”. It’s a constant internal conflict of feeling grateful I don’t have it worse, and feeling frustrated that i have to have it at all. While my clinical presentation may be minor, my symptoms interrupt my life daily.
MS has required me to change my plans. And that sucks. I want to be a lead teacher, running my own classroom for students with significant needs. I wanted to be able to finish my second grad program. I wanted to stay in Austin. I want to be able to work all week and enjoy the weekends without worrying that my weekend choices will prevent me from being effective at work the next week. I want to be able to do more than work on weekdays, to come home and play with Winston and take him for walks and work on his training. But I can’t do any of that. And it really really sucks.
So for now, I follow my new plan. Im back in Boston. I’m living at home so I have help with Winston…and having someone to help make me meals when I’m too tired to function is a major plus. I’m co teaching at a private school for young students with social and emotional challenges. Im no longer in grad school. And I’m resting. Im taking time to adjust to the new normal. Im focusing on ways to fight my fatigue, like working with a trainer and nutritionist. And I’m adjusting.