a smaller life

observations

I'm learning all of these tricks lately- getting some ideas as to how to manage the entire MS mess- so many things to watch, to lose, to monitor, all the accessories and accoutrements, finding and refining my routines.

I'm a creature of habit. I do well with change within the change itself, but if you tell me change is coming I'll dread it, and after the change has arrived and I've made it through the heat of the moment I am immediately looking for my new patterns. It's part of an obsessive nature (my obsessive nature); I am always looking for ways to more perfectly line up all my shoes, and the chaos of major change is a prime opportunity for that sort of thing.

Setting new habits is a process which starts out with looking like no process at all: I watch, and notice, and note. I move something, watch some more, move it again: it begins looking like like a complete mess, but I try to form my patterns around problems instead of forcing everything into a rigid, preplanned structure that might turn out to be useless. Most of the process is relaly just in observation.

Some things I've observed recently:

• Fatigue is not weakness, it is a medical condition and the only cure is rest. Also, related: fatigue does not play fair in Feats Of Strength.
• If you wouldn't eat somewhere, taking pills there is unhygenic and there is NO WAY I'm doing a shot there.
• People say stupid things because they don't know better. It is usually not their fault. This does not mean I have to put up with it.
• Going into my bedroom and seeing all my drugs laid out on my dresser makes me feel like an invalid, and that makes me pretty damned crazy- pants.
• I hate anyone watching me inject. I wouldn't mind teaching someone how to take a sub- cut shot, but otherwise, can I have a little privacy, please?
• It is not silly to have frilly accessories to drugs. Taking my pills out of my little bluebird dish makes me happy.
• If I want to call it "shooting up," I will and you, Mr. -Shared- Solutions- guy- who- doesn't- take- injectable- medication, you can quit that lecture RIGHT. NOW. I'll call it "riding the goddamned ferris wheel" if I want to, because while it may not be pretty, it is all mine. Stop fucking calling me if you don't appreciate my language; I certainly do not appreciate yours.
• I do not have to be pleasant because I am sick. I will try to play nice with others, but it's okay to have cranky days, and if people are unpleasant they'll get the appropriate response.
• Cats and cakes make everything better. If cats fail, go for the mixer, which is a long way of saying try cats first, then cakes.

in which I'm still getting it straight

 

 

 

I screwed up. I got sloppy with my pills over the last week and I'm feeling like hell today. I can't even fake it over the phone; Gryphon called me on it right away, despite my protests. Ach. I hate when I can't fake it.

So today is a bad day, but it's an informative one, at least. I'm religious about my shots - and I need to get smarter about my pills. There are a lot of them, but it's not unmanageable; the only this prohibiting me from getting this right is laziness, and I can't afford to be lazy. Today has been a pretty decent reminder of why I have those pills- today I'm learning how much I need them.

I'm still figuring it all out. People keep telling me they know someone else with MS, that I should talk to them, and I always almost take them up on it... and then I don't. I could use a mentor, or something, someone like that, but how do you begin that conversation? What do you say? "Hi, my name is Sarah, I have lesions. How are your lesions?"

I don't know. 

A few days ago I was in a diner restroom and met a woman with a completely badass walker. It carried things in a basket, like a kid's bike, and you could turn it into a chair. It was glittery and purple, exactly like my bike as a kid, actually- all it needed was tassels on the handrests. I asked her about it- it was a cane day, which made it easier.

It was awesome, actually. She had MS, too. She told me about making the insurance companies pay for things like canes, and walkers (even awesome ones!), and about making the transition from canes to walkers to wheelchairs (she is usually in a wheelchair). She was cheerful and sweet and overall just made me feel better without even trying.

For now, I'm on my own, with all my plans. Plans such as: quit smoking (I don't want to get into it, but I'm doing all right on this one), eat as well as I can, yoga, meditation. Taking my pills on time. And running. I felt good enough for running this week, if not for the snow. I hope I can get back to that whenever Baltimore gets around to plowing my neighborhood. I guess that means I have until about June. Oh, Baltimore.

 

in which there are apologies and plans

 

 

"Do not hurry, do not rest." -Johann Goethe

I've struggled over how to begin this post for a few days now. Everything sounds too dramatic, too big, too much. I'm tired of too much. I want simple words for simple things.

I've been sick- allergies, steroids, then a MS relapse related to the allergies, rinse and repeat. To be straight about it: January sucked and I'm glad it's over. I spent a lot of the month in bed reading Charlotte Bronte and ordering skirts on Etsy. Okay, the Bronte and skirts bit was all right, but the rest of it was pretty suck.

I'm coming to understand and accept that this Being Sick shtick is going to be a part of my life, and that I need to get okay with it. I'm still working on the acceptance bit- I have a tendency to waste a lot of energy being mad, or rebelling against my traitorous body- but I work at it. I'm learning to spend my energy carefully, as though there were a limited supply, because some days that might be the case. I'm learning to go steady but slow- to listen to Goethe, because heaven knows I'm no good at listening to my body just yet-learning to single- task, to slow down and pay attention. I'm even taking a crack at meditating, but that's another post altogether.

On the other hand- in the Things That Are Good column- I seem to finally have gotten over the dread "Copaxone hump"- I've gotten accustomed to giving myself shots, and it looks like my body has finally gotten used to the drug itself. No more baseball- sized welts, no more itching, no more accidentally wasting a dose by injecting the air. Best of all, no more of that creeping, burning sensation for half and hour afterwards- a sting, some warmth, but it's all so minor now. It got worse before it got better, but I'm glad I stuck with it.

Also a positive: all of those hours laid up left me with time to make lists and plans. I've been thinking out how to re- organize this blog into something more coherent- something I've struggled with since returning from Afghanistan. I didn't get any knitting done, but I've written pages and pages of plans for my life, our house, my body, and this blog. I'm rich in plans, I tell you. Filthy, filthy rich.

I'm also rich in comfort lists: scribbled into my black book are long rambling lists of random things that make me happy. I don't remember writing some of them, but I should dedicate a weekly post to these lists- re-reading them makes me feel warm all over, even without the mega- doses of benadryl, etc. To be honest, there's something about spending a day (or three weeks, whatever) in bed with your paper diary, some good books and lots of pencils, stoned out of your mind on legal, prescribed substances. I mean, I'm not advocating it, necessarily, but I definitely had some sort of quiet creative breakthrough last month, and that's another positive.

My inner critic is beginning to rear her head and snort at so much positive thinking. If I don't leave this soon she'll start muttering about my Pollyanna complex.

The teal deer version: I'm so sorry I let this sit for over a month. I was sick, but I'm feeling better now. I have plans. It's not all bad. More later.

 

catching up

 

I know, I know. I don't write, I don't call. The truth is, I've been so absolutely wiped out lately- there is so much going on (so much to write about!) and I've been struggling with my health- a bad mix if there ever was one. I take my pills and my shots like a good girl, but only recently have I begun to feel what seems like the beginnings of improvement- and I say that with great reservations, as it's only the last two days or so that really seemed better.

We opened the new studio, Sam and I are playing with the idea of (finally!) demolishing the kitchen, dyeing has stepped up at least two- fold (if not three- fold), my daughter is a full- blown teenager with a boyfriend, I'm still not driving which leaves me feeling a little claustrophobic, and I'm suddenly feeling just how responsible Gryphon and I are to at least nine other people, not to mention our customers and oh, yes, of course- our own families. There doesn't seem like there is too much room in there for me to be sick, which is the way I traditionally approach any sort of physical infirmity- placing it firmly on the back burner with a stern I'm sorry, I just don't have time for this right now.

It turns out, I don't get that option. MS turns out to be a prima donna of sicknesses; if I'm not paying attention to my body's cues, she'll step right up center stage and remind me exactly who is in charge here. We're learning how to live together, and I'm quietly plotting my revenge with my nightly shots and what seems like fistfulls of pills, because no matter what this disease thinks, damnit, I'm the one in charge here. I'm determined to subjugate this in some way, to regain control over my body and my time.

Learning to take a proactive stance on my health- on realigning how I live, focusing on the right fuel and rest and exercise and staying informed and not just blowing this whole thing off as another thing that will go away- that's new, and it eats up more of my resources, too, but I'm learning, and trying. 

In the meantime, I knit- nothing that I can show, all holiday knitting, but it's happening- mittens and shawls and socks, as well as the world's most boring project of all time- a six- foot tube scarf in stockinette for Kiddo with her own handdyed yarn. It's a labor of love, to be sure; God knows I'm not knitting this because it is interesting in any way- but I know she'll adore it. 

So I'm here, intact, although some days it really does feel like "intact" is all I can manage. I have some designs cooking in all that holiday knitting, including a lovely pair of colorwork mittens in both Skinny Bugga and Djinni Sock as part of a collaboration with the ever- lovely Kate of Dragonfly Fibers. I'm focusing on getting well, and working hard, and all the sweet bits in the details of life, the stuff that really matters- the kindnesses of friends, my daughter's smile, my husband's hands, good food, crisp mornings, flannel sheets, cats, reading Sherlock Holmes stories in bed, strong morning runs, apple cider and milkmen and hot coffee.

In the end, that's all that really counts, right? The small moments, they're all we have.

in which, for just a moment, I get real

       

I’ve had a good amount of people ask me how I’m doing, lately. It’s a pretty common question-  we say it in some form to just about everyone we see, every day. I have a policy about lying, even little lies; I’ll evade like mad, and I’m an old pro at diversions, but I don’t like to lie. That turns this average, simple question into a real stumper most days. I know that it’s all form- that very few people are really asking how things are. It’s an opening gambit, not an invitation to get into the real muck of one’s daily life. I know that. But saying, oh, I’m fine, or worse, we’re great- it sticks in my mouth, every time, because it’s a lie.

I mostly choose diversion. When confronted with the question, I’ll bypass it altogether and go straight to weather. It sounds something like this- Q: “Hi! How are you?” A-“It’s another beautiful day.” “Happy to be here,” is also a good answer, but that only works if I am somewhere, and never on the phone. It is a lot less awkward in real life than it reads on the page, but it still makes me feel horribly socially stunted. I have a horror of over- disclosure (she says in her BLOG, I know, the irony) and I’m convinced that I’ll just blurt out the truth if I’m not hyper-vigilant.

Which is funny, really, because I have the hardest damned time telling anyone. I’ve tried to rely on the blog to do the dirty work for me, but I’m well aware it’s a coward’s way out.  I’ve had several phone conversations where I just chicken out- I can feel it happening, like a slow- motion fall from my intentions into mediocre small talk. So if I’ve called you recently and the conversation was shapeless, rambling and insufferably inane, I’m sorry.  I still haven’t managed to tell my daughter, despite having decided I’d do so six days ago; I just freeze up inside at the idea.

The real answer to how I’m doing is that I am doing. That’s it, just doing. I press forward, because motion makes me feel like everything is still humming along, unchanged. I have some rough days- days when nothing I write or type comes out right, when the words just don’t come, when my hands fail me, when I feel shaky and unsteady, when I am confused and lost, when my head just pounds, when I pretty much live in bed and wait for it to pass. More often, though, I have days where it’s all so minor- just a memory of the bad days, really- that I can pretend it’s not really happening until I have to stop and take a pill.

I still don’t know what this means- if it means anything- to me. I don’t know how I feel about any of it. I know I can’t stick my head in the sand and make it all go away- as comforting as that might be. I know I have to get proactive- run more, eat better, sleep right, make good choices- and I know I need to start that right now, although I’m having problems getting started. Tomorrow, I think, every day.

I am trying to ground myself in the small moments of my life- because that really is all that there is, the small moments one after another- instead of getting mired in the scary unknowns of the bigger picture. I fail, but I keep trying. That’s the one thing I’ve ever truly excelled at, really: trying.

(Today's post brought to you by Samuel Beckett, the genius behind one of my favorite quotes: "Ever tried. Ever failed. No matter. Try again. Fail again. Fail better.")

Today was my woodturning class at Mark Supik and Company.

I've been looking forward to this class ever since I found a pamphlet for their knitter's tools class on the Spinster corkboard a few months back. The studio is amazing- great space, and the smell of all that wood is just magical. Mark and his wife, Nancy, were so much fun. Even the lunch was terrific- sandwiches from DiPasquale's, the first real sandwich I've had within city limits ever. (I'm a bit of a sandwich snob. I'm from New England- the standard is pretty high.) The roast beef, it is to die for.

I came home with one finished bowl, one partly- finished bowl (I ran out of time), plans to go back soon for their weekend workshops and just reeking of woodshavings. This was exactly what I needed to finish out a stressful week- something simple, relaxing, and messy.

---------------------------------------------------

I'm still processing all of this week's events- letting go of the fear of a tumor, trying to puzzle out what exactly a not- yet multiple sclerosis diagnosis means to us and our future. It all feels very surreal, almost as though it's not actually happening. When I list off my symptoms it all sounds very scary- and frequently it is- but right now, sitting in my living room I feel just fine, which just doesn't line up with the image in my head of someone with MS. I suppose that image will need some adjusting. In the meantime, I self- medicate with old seasons of Mad Men, Victorian literature, loads of knitting and strong, strong coffee.

it's not a tu-maaaaaahh

It's been a long, long few weeks.

Just before Sock Summit, late last July, I started having these headaches- awful, throbbing dull headbangers that would send me to bed for the afternoon. Stress, I figured, and blew it off. When the sight in my left eye started getting dimmer and dimmer each day, I blew that off, too, remembering a case of stress blindness I'd seen in school. No joke, it really happens. Also: no joke, I really can be that dumb.

When I got home and after more than a little prodding from Sam I went to the doctor, who sent me for the full workup- blood tests, ophthalmology, neurology, MRI, MRA, some other acronyms that I can't break out. It was all very stressful and what we learned, for the most part, is that I'm healthy as a horse- great blood pressure, low cholesterol, negative for the anti-phospholipid antibody syndrome that runs in my family. All good, except for the MRI. They found something thing on my MRI- the dreaded something- and started using some pretty scary terminology: terms like malignancy and astrocytoma and possible degenerative neurological disease, mainly. 

Today we ruled out malignancy. Malignancy, in case you're a layman like myself, is one way to say tumor. Astrocytoma is the sort of tumor we ruled out.  While the other option- multiple sclerosis- isn't great, it also won't kill me, and it doesn't involve chemotherapy or people cutting into my skull, either.

It's sort of funny- I'd dreaded the idea of an MS diagnosis up until the doctor said it could be a malignancy; now I'm pretty okay with the whole idea. Given the other option, it sounds just fine. Everything in perspective, I suppose. And I still don't have a firm diagnosis; the best I have is the training wheels diagnosis of probable multiple sclerosis, a small cache of meds and my neurologist's assurances that while he's pretty certain I can expect a big- girl diagnosis under my tree for Christmas, I should still be okay.

They're still performing tests, I'll be getting an MRI every few months for the foreseeable future, and there is still no hard diagnosis, but we're on our way. It's a process, they tell me, and as long as I get to keep my hair I guess I'm okay with that.