A funny thing happened this afternoon. I was pouring warm diet soda into my mug. As expected, it began to bubble to the top. I have always been fascinated by that. I encouraged my daughter to do a science experiment on it in middle school to determine what causes the bubbles to overflow when pouring and how it can be avoided. Needless to say, I was considerably more interested in the topic than she was, but, back to my mug. Today when I filled it, it didn't overflow. I stopped pouring at the right time. Now this may not seem significant to you, but if you have spent any time around me, you will know that I am always either rushing to fill it (and since I am impatient, it overflows) or I am playing scientist and trying to continue pouring as the bubbles pop and time the flow of pouring it so it doesn't overflow. This requires focus and patience, (which I lack) so I usually end up making it overflow anyways. Today, I opened a brand new bottle, full of carbonation and poured the bubbles right to the top, then stopped and waited for them to go down to finish filling it. No mess. Not even a little volcano. I actually laughed and said aloud to myself, Wow. No spill. That is significant. I must have learned patience. It may sound funny, but the reality is that I was aware that something really had changed.
Transverse Myelitis, Multiple Sclerosis and Opic Neuritis have all taken a great deal from my life: My job, my business, many of my hobbies, and obviously my health. But I have had a nagging feeling within me from the beginning that it also has things to give if I can just find and see them. It has already given me an excuse to write. Today I realized, it gave me patience, even if only for a moment.
Life altering illnesses are a crazy combination of good and bad. One of the things I have struggled with throughout the last 6 months is time itself. I cannot work and do my job. I am learning to accept that and trying to plan for a new future. So what do I do with the time that I now have in abundance? A friend asked me that recently, and I paused before responding, because it isn't an easy answer. Not because my days can be hard, but because sometimes they can also be good, and it's hard to explain how they can both co-exist.
You may have heard the term "Island Time", where life moves at a much slower pace. MS Time is kind of like that, except that I didn't choose to go there. It's like being on vacation, except that you have no choice but to move slowly, think slowly, and rest. And while you are there you split your time between either feeling like you are coming down with something, but will try to push through it, or that you are actually sick and need to curl up in bed. Except with MS, instead of sneezing, and coughing, you have a brain fog, blurred vision and headaches, muscle weakness, pins and needles feelings in my limbs, and crushing fatigue (to go along with my TM legs that don't work as they should). The bad days usually happen at least once a week, sometimes more if I'm not careful. Most days I feel like I'm floating somewhere between the two ends of the spectrum. That has become my new normal.
Everything is at a much slower pace now. Everyday tasks take so much longer to do. Basically, everything I used to do after work multi-tasking several things at once are now all individual tasks that take up large chunks of time. Add to it physical therapy once or twice daily (using the bike in the morning to help me get my legs moving and weather permitting, a walk with the dogs in the afternoon) and the day is gone before you know it. Sometimes I feel like I did a complete task analysis on my life and broke it down into smaller, more attainable parts so I could I approach them one at a time. Yeah, I guess that's exactly what I did. I have become my own special ed teacher.
I need a lot more sleep now than I used to. I have to do an energy check to see how I'm feeling to decide what I can do each day. I have to keep my planner handy, or I am certain to forget what I have to do or where to be. Sometimes I even forget with it, but that's another story. A busy morning often means an afternoon nap. A couple busy days in a row with activities or appointments usually mean a couple days of lethargy. I'm kinda like a big toddler or young old person, lol. Naps are good!
I'm sure that doesn't sound fun, and in truth often it's not. But when something becomes your new normal and you spend all your time hating it, that's not much of a life. You will always be miserable. So I try to accept my new normal and try to find the hidden joys, and allow myself to enjoy the obvious ones. You wouldn't think it would be hard to enjoy the obvious joys, but those are actually the hardest of all. I really do enjoy the time I get to spend with my girls on walks. I consider it a blessing. I love that I am getting a chance to write regularly. I am excited for the chance to experience and write about new Purple Moose adventures. On days when my eyes make it so I can't read, write or work on the computer, I get to take to my bed with my feet up and try to watch (or at least listen to) television, or a movie. I recently started watching the Fuller House shows on Netflix. I have to admit, I'm thoroughly enjoying it! They are all blessings hidden in an unwanted package.
But with those joys for me, comes guilt. I am not working, I shouldn't be having any fun at all! Well, at least before 3 PM. I actually spent the first few months of my illness purposely avoiding anything I would enjoy until after 2:00 pm. Not that school was out yet, but it was close. If I wasn't resting or exercising or seeing a doctor, I tried to do something that made me feel productive. I felt I shouldn't be allowed to enjoy the slower pace. I should be clawing to get back to the chaotic one again (even though I know now I can't). Looking back, I'm not sure that perspective and my need to push myself helped my recovery any. I have accepted that pain, discomfort and fatigue are part of the new normal. Now I need to allow myself to let joy be a part of the new normal too.
I do have to take life at a slower pace; my MS island pace. But you know what? After burning both ends of the candle at accelerated speeds for so many years, to slow down, and take the time to appreciate simple things is a real gift. It is a breath of fresh air. I love not having to move so fast and juggle 10 things at once. I like that I have time to watch movies, something I rarely did before. I love that I have time to read a book (I just wish I could get my eyes to agree to let me do so more often). My favorite days are ones when there are no urgent calls to be made or places to go or paperwork to complete and I can fill my time with writing, cooking, eating and exercising. I am trying to learn to not feel guilty when I feel happy doing something I enjoy during the daytime hours. I am slowly learning to accept this and to allow myself to move at a slower pace. I have been given the gift of having to look at life from a different perspective. Though there is a lot of old me that I miss, there are also parts of old me I don't miss at all. I am slowly learning to give myself permission for joy.
That's why I was surprised, but pleased when I poured that mug of bubbly soda and it didn't foam over a bit. It was something I just did naturally. I wasn't concentrating or trying to be extra careful, I was just moving on MS island time and slowly pouring my drink. I had learned to be patient pouring it because there was no need to rush. It's sad that it often takes something so serious to wake us up to truths that are around us all the time. I hated my crazy pace, but I would never have given it up voluntarily. But now that I am here in this place, I plan to make the best of all the good things I longed for, but rarely took advantage of while I was healthy.
My advice to you is this, if you have MS or TM or some other struggle, let yourself see and enjoy the simple pleasures it can bring, and allow yourselves to enjoy them. Heaven knows you deserve it! If you are healthy, don't wait for something to go wrong to slow down and appreciate simple joys. You have the best of both worlds at your fingertips. Don't waste it, embrace it!
Kristen is a former kindergarten and special education teacher with two wonderful grown children, two precious fur-baby dogs and a mischievous cat. Diagnosed with Transverse Myelitis in September of 2016 and Multiple Sclerosis in December of 2016, and Optic Neuritis in January 2017, life has changed in a big way in a short amount of time. But HOPE springs eternal as she rediscovers and reinvents life along the way.