“But nothing prepared me for the outsider status of being chronically ill.” Words of insight and wisdom from someone who knows, and is far more eloquent than I. Reading this made me cry. I want to shout,”YES!” after every line. I have nothing to add, and I pass it along for your consideration.
My fellow spoonies will understand how good it was to hear from my doctor that I have (another) UTI. The “another” part not so much, but the UTI part explains a whole lot. I shouldn’t be, but I am still surprised how the effects of an infection, or anything that triggers an immune response, go so deep and wide. I’ve been taking nitrofurantoin ( a new one for me) for a few days now, so I’m expecting my strength, such as it was, to be returning soon.
In addition to overall physical weakness and increased lassitude, I find (and maybe you do too) any kind of infection leaves my cognitive functions dulled more than usual. Frustrating when I have so many brilliant ideas of to share with you. I can feel the ideas fully formed rolling around in my noggin, but when I sit down to write, I don’t seem to be able to build words around any them. In my younger, healthy days, I wrote a great deal. My stream of consciousness seemed to flow directly from my brain onto the page. I produced great bushels of chaff, with maybe here and there an actual grain of wheat. Not so much anymore. It seems that my writing forte now is the false start. Add in the complication of using dictation software and I never seem to be able to get anywhere.
Anywho, enough about me. While I don’t think I will post to this blog anywhere near as often as I would like to, I hope you few enlightened souls who follow One Life will be patient and stay tuned. In the meantime, feel free to poke around in my photography portfolio at Captured Light.
Better yet, turn off the computer and go play in the sun.
One night back in early December, I fell out of bed. Well, more like slid out. I was wrestling with the flu at the time. My fellow MSers will know what that means. (For you muggles, any kind of flu or cold or infection can send multiple sclerosis symptoms out of control.) I was feeling overall just plain weak. I sat up on the edge of my bed, and in the process of getting back into it, I started to slide off, and didn’t have the leg or arm strength, or mental clarity, to pull myself back in. So, I let it go and slipped onto the floor. I ended up on my side between the bedside table and the bed, unable to move in any direction. We called the Uh-Oh Squad, and two stalwart young men arrived to haul my bulk up onto a chair. Luckily, the only thing that was injured was my pride.
Like most evolved primates, I’m able to learn from events like this. The take away is a reminder to pay attention to every step. When I am getting out of bed, or transferring from my wheelchair to the stair lift, or out of the bathtub, or from wheelchair to car, or even reaching for something in one of the kitchen cabinets, I need to be fully mindful of what my various appendages are doing. I go so far as to actually talk myself through these transfers, paying attention to every handhold and foot placement. It’s a little like playing Twister – left foot there, right hand here, right foot over there, etc., the goal being to not fall down.
Mindfulness extends into other aspects of life. When one of Jack Kerouac’s critics first saw the manuscript of the book, “On The Road,” he said, “This isn’t writing, it’s just typing.” I used to write that way, though not quite to the same effect. I just let my fingers do the work, pouring words onto the page, just typing. The goal was to be mindless, to not think about every word, plunging headlong into the stream of consciousness. I would go back after I was done typing and either make sense of it or not. I think it is safe to say that both the typing and the editing worked better for Kerouac. Writing for me now is whole different animal. It has become an exercise in mindfulness. My fingers don’t work so well, so I have to dictate into a headset. The software that translates my speech into text on the screen works remarkably well, but it requires that I speak very slowly and carefully and precisely. I need to be conscious of every individual word and punctuation mark. I would like to think that my writing has improved with mindfulness. There certainly is less of it, and that is probably an improvement.
There are books and websites and seminars and retreats and smart phone apps dedicated to the practice of mindfulness. Those are all well and good, but in the end, mindfulness is nothing more than paying attention. Mindfulness just means being aware of what’s going on around you. The practice of mindfulness is identifying the “magic moment,” when the mind drifts away from what’s right in front of it, providing the practitioner the opportunity to refocus, and begin again. There are endless opportunities in every day to begin again. Disability provides many of them. In my case, not being mindful can easily mean falling down.
This ain’t your dad’s marijuana. At least it certainly ain’t my dad’s marijuana. This stuff I got is far more potent than anything I’ve ever had before. It doesn’t smell like it, it doesn’t taste like it, it doesn’t even look like it. When I opened the packet, I was met with a heady aroma, floral and sweet and spicy. Inside the packets were tight buds of pale olive green with strands of bright red woven through them. Definitely not the baggie of stems and seeds and shake that I grew up with.
I’ve written and rewritten this part of the story several times. After about two weeks of investigation and testing, I’m still not sure if it’s doing what I want it to. I was hoping for a slam-dunk, a “Wow, this stuff is amazing!” moment. I was hopeful that at the very least, it would ease the painful and random Charlie-horse leg cramps that keep me awake most nights, and maybe even help me get off the drugs I take for insomnia. I was hoping to be amazed.
What I’ve found is that in the two weeks that I’ve been smoking it before bed (and often again during the night), I’m having much less cramping. Not no cramping, but fewer episodes, and less intense. Nothing amazing, but it’s better. Nothing else I tried made a dent – not stretching, not medications, not “eat a banana before bed.” Cannabis has not eradicated this problem, but it is much better. I will need to go back to The Store to talk with the pot-istas and the experts, and see if we can fine-tune the product, but for now, I’m happy with the results. I’ve enjoyed doing the research and field testing – no hardship there.
In the meantime, I’ll just be holed up in my laboratory continuing my scientific investigations. Let’s hope The Man doesn’t get all up in our business.
Click here to buy my t-shirt! Show the world you’ve got spoons. 100% cotton t-shirt is perfect for summer. Wear it everywhere! Original artwork by Val Sivilli. 50% of profits go directly to the National MS Society.
I saw a t-shirt once that said, “I do the MS walk every day,” sarcastically referring to the well-known MS Society fund raiser. For my MS walk – or more precisely my MS shuffle – there are distinct steps. (Follow along if you’d like!)
The MS Shuffle: Standing at your walker –
This is the same pattern for normal walking, the MS Shuffle just requires conscious attention to each part. It can actually be a very mindful, almost meditative way to walk, breaking down each step into it’s component parts and paying careful attention to each part. It becomes a sort of mantra, “Shift weight, engage leg, lift foot, step. Breathe.”
Maybe I should lay some of those Arthur Murray dance instruction foot prints on my floor to guide me around the living room. And find a very slow box step to play. Before long, all the hep cats will be doing the MS Shuffle. Remember you heard it here first!
Many years ago, my daughter had a heart transplant – a sudden and at times terrifying journey. It all worked out remarkably well, better than we dared hope. After her surgery, I thought it might be a good idea to have her sit with a therapist to talk about any emotional issues she might be struggling with. In the end, she didn’t really understand what she was doing there, and the take-away was that she didn’t want to be The Heart Transplant Girl. She just wanted to be like everyone else.
In much the same way, I don’t want to be The MS Guy. Multiple sclerosis persists intruding in my everyday, so there is only so far away from it I can get. But my inbox is filled with updates and newsletters and new blog posts and comments from various forums I participate in. I feel somehow obligated to read it all, as if it is a responsibility, part of taking care of myself. I could spend every minute of the day reading the latest, and following links, and investigating new ideas and therapies. I feel pulled to be an advocate for MS, for disability issues, and as a member to The Disabled Community. And on and on. I wind up not only dealing with my own MS body and brain, but I border on obsessing about MS outside of myself. As if I don’t want to miss any tid-bit of important news. It gets overwhelming. To the point where it begins to crowd out other things I’d like to be thinking about.
So although I’ll never be able to forget that I have MS (the MonSter), I try to find ways to move it at least to a side burner on the stove, if not a back burner. And perhaps for a little while each day, to not be The MS Guy.