exercise, expectations, future, learning, lesions, ms, multiple sclerosis, new baseline, symptoms, travel
It has been ages since I posted (almost a year – my goodness!) mostly because I’ve been doing well (or well enough) and I’ve been incredibly busy between work and the business and life in general. I keep intending to return. So, here I am. Every thing is much the same as my last writing I believe except that my questionable cervical lesions turned out to be not questionable at all. I have a lesion at C2 and a small brainstem lesion as well. How did we find out? Well, I started having difficulty with my hands for the first time. Burning that would run from my shoulders down, weakness that would prevent me from opening a jar or can, and cramping in my forearms. When my forearms get tight, my hands tend to pull in – like I’m making a first – and I have to focus to keep them open.
I visited my MS specialist early this month. As part of the visit, I asked about my potential for improvement. He was kind, but told me that it wasn’t likely at this point in treatment and this was probably my new baseline. I’m two years in, so I knew “better” was not likely, but hearing the words out loud was hard. Sobering. He suggested instead that I need to focus on better overall health and exercise to maintain brain volume and to feel better in general. We had discussed exercise in past and he emphasized that I need to be doing some form of it every. single. day. (ugh)
Even before this visit I had started walking. W and I have been going to the hospital up the road from us that has a nice 1 mile path. It wanders around two ponds and provide sufficient distraction that it doesn’t feel like a chore. There is even a tree toward the end that always makes me smile. The location of the hospital used to be a large farm (cows and all). Very few of the original structures remain, but this one was left alone. Talk about overcoming adversity.
And we went to the beach. I adore walking on the sand and communing with the waves. We walked six miles one day. Just came out to the beach, took a left, and walked until we were tired. Then turned about and came back.
We rented chairs on the beach and after our walks, we would sit under the umbrella and watch the waves.
So, I’ve definitely been trying to get exercise. I installed the Stepz App on my phone* and I’m tracking what I manage to walk each day. W pre-paid for 6 months at the Y for both of us so I could start swimming again. I swam a bit while staying at a hotel in DC recently and it was a good reminder of how much I enjoy it. Unfortunately, the Y’s pool heater is broken (again) and cold water + my muscles is a very bad mix. I’m hoping they will be back up and running next week.
W has also been trying to cook as many vegan meals as time allows. I bought a copy of Thug Kitchen’s cookbook. Their cookbooks aren’t for everyone (*ahem* let’s just say that they play up the Thug angle quite a bit), but the recipes are amazing. For anyone who may want to give it a shot: be prepared to spend some time. W tells me each recipe is taking him an hour or more. The end result is worth it, but you have to have the time to set aside.
So, we’re moving forward. I can’t fix the damage that has been done, but I can focus on losing weight and exercising more in hope of feeling better overall.
*Related note: I would recommend Stepz. It allows you to put in your height and weight and recommends goals for you each day. Plus, it calculates your mileage more accurately. As a vertically challenged individual, five thousand steps for me is not the same distance as five thousand for my husband.