Forward, into the past!

107 “Children and hot fluid should be kept apart.” Sage advice from the side of my French-press coffee brewer.

A new reader of One Life (that brings my total readership to three or four) has been bravely going into the Archives and posting comments and likes (thank you, Katherine and your wonderful Photobooth Journal), inspiring me to delve back into the past. I was surprised to find how far back One Life goes – all the way back to February of 2005. I spent far too much of yesterday afternoon pawing around, reacquainting myself with myself.

What I found was a personal journal, musing about what I was doing day-to-day, observations about my early experiences with multiple sclerosis, family and work life. Usually there was a photograph attached, although the links have long expired so I don’t know what the pictures were of. Lots of links to other sites, odd things found online, what music was playing as I wrote, those links long expired too. In the end, the record is only interesting to me, and even then, not very.

But I feel inspired to get back on the horse. To stop taking myself and my blogging so seriously. What paralyzes me now is the self-imposed notion that each post has to be a fully thought out and insightful essay. I have a folder on my hard drive of barely begun such essays, writings that invariably get tangled up with lost threads and wind up pointless. Almost as if I was writing for an audience, and not just for myself. Imagine that!

Well, no more. I’m going to write what I want. I hope you’ll come along for the ride and share your thoughts; I’d love for this to be as much of a conversation as it can be.

What’s playing: Sweet Jane. Thanks, as always, to Radio Paradise, the best radio station ever.

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“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.

10/17/17

Some mornings when I wake up, and I find it really hard to get out of bed. Some mornings, I wake up and nothing is cramping or numb or tingling. I’m not feeling those random bee stings or pushpins my legs. My mind is relatively calm, the anxiety hasn’t wound up yet. My bladder is cooperating. Some mornings, all of the usual reasons that chase me out of bed early are leaving me alone. But still, it’s hard to get out of bed.

Every now and then, the planets align, and lying in bed under the covers feels too good to interrupt.

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Congratulations, it’s an infection!

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.

My Kryptonite

Oh, yeah. Now I remember. Maybe it’s a feature of my MS brain (what’s left of it), or simply a human-evolution survival mechanism, or maybe it’s just me, but when the weather turned beastly hot the other day, it took me a bit to figure out why I was suddenly feeling so weak. Oh, yeah, it’s hot, it’s my kryptonite again. I remember years ago, when MS was just starting to rear it’s head, or maybe this was just before, on the first hot day of the spring, walking from the back door of my office building to my car in the parking lot and being mystified, and a little frightened, at how difficult it was to go across those few dozen yards of tarmac. I was still in the “What the fuck is this MS shit all about,” and the “what the hell is wrong with me,” phase. (I still ask myself, and the cosmos, those, and other, questions.) I had no idea what MS meant (topic for a future post), and was learning stuff as it happened.

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When I first experienced the power of heat, I really didn’t know what was going on. I knew about the foot drop, and the optic neuritis, and I had read about fatigue and lassitude (still believing that this was stuff I could understand and grok by reading about it), but, wham, that first wave of heat-induced weakness caught me by surprise. Oh, so this is heat intolerance, eh? Lovely. I gotta deal with that, too? (How innocent I was. Sigh.) Fortunately, I live in Maine, where we don’t have sweltering hot days very often. And after all these years, I still get caught by surprise, and get reminded all over again.

So, yeah, heat is my kryptonite. I wish I felt like Superman the rest of the time. But, hey (as we say in Maine), at least it’s not snowing.

560Click 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.

Field Trip: The pot store, pt. 2

la-confidentialThis 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.
560Click 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.