on conservation, emotion, and sitting with it all

I am growing Meyer Lemons in the studio. This has nothing to do with this post at all.

I am growing Meyer Lemons in the studio. This has nothing to do with this post at all. I just like to show people our new blossoms.

Man, sometimes it’s hard to do the right things.

I work really hard at energy conservation. That’s a funny sentence right there: “I work really hard at energy conservation.” A total oxymoron if there ever was one, but anyone who’s been ill for any extended period- ever have mono?- you know what I mean. You have to save up for when you need your strength. People frequently use the Spoon Theory to get this idea across. Want to spend time doing anything physical? You know you’ve got to take the beginning part of your day easy. You have to dole out your energy as though it’s a physical, tangible good.  Sometimes this can be tricky. Sometimes it involves complicated schedule arrangement: I can go out to a show on Friday night, but I better remember that’s happening because I’ll have to taper off my schedule for a few days beforehand. That’ll be a late night, and if I’m going to be awake, social, and alert enough to drive home, I can’t be doing “normal me” stuff for about 3 days beforehand. 

It isn’t impossible, but I’m still relatively newish at this, in the grand scheme of it all. My diagnosis came through in 2009, and I didn’t really get it for a few years after that. I fought it for a while. I still do, because sometimes this just doesn’t work. There are occasions when life kind of happens all over me and I have to roll with it. That’s life, for everyone. You just do the thing. 

The other issue is simply the stress of energy conservation. If I save here, what am I missing there? Which corners do I cut? There really isn’t any true winning: it’s sacrifice no matter which way you slice it. Everyone has to slow down eventually, of course. I try to frame it that way, which helps at times. There are other, worse days when I look in the mirror and remember that I am not, in fact, 75 years old, and that even if I were, I have friends in their 70s who are more active than this disease allows me to be, some weeks. Those days are not so great. 

It’s easy to simply slip into a sneaky hate spiral from this place: FORGET IT I HATE EVERYTHING I AM NOW A SHUTIN WITH MY MILLION CATS SOMEONE TURN ON MATLOCK ALREADY AND THEN GET OFF MY DAMN LAWN. And I have days that feel that way, I won’t lie. I’ll watch too many home restoration TV shows while knitting on my couch and loathe every person who turns down perfectly good houses because they don’t like blue walls and grumble to my dog about the people who paint over original Craftsman woodwork because SERIOUSLY, WHAT KIND OF MONSTER EVEN DOES THAT. It’s okay. Everyone has piss- poor days. 

Every so often, taking a day to sit and be with my feelings, even if they are ugly and scary and look a lot like “oh my god is this time forever will I never feel okay again I’m afraid I will never stop hurting this is scary and I am so tired and it makes me so angry why is this happening and why can’t anyone fix it,” that’s immense and frightening and absolutely necessary. Those feelings are huge and terrifying, and it took me forever to be all right with just being in the room with them. They are uncomfortable and so, so ugly, you guys. They are so goddamned unbecoming, my rage and impotence and just stark fear about this disease. I am afraid. I am angry. And that’s okay. I mean, it’ll never be okay, but it’s okay to feel that way, and it’s okay to take a little time to be ugly with those feelings. 

The important part is learning to take that damn day, and then taking it. You have to take that day, when the pain gets to be too much or when there’s a relapse; if you don’t stop to acknowledge these emotions they start to rip at you from the inside. So you stop, and sit with them, but then you have to just get on with the rest of it. This part isn’t brave, or inspirational, by the way. There’s not a goddamned thing that is heroic about this, so if you’re beginning to wander down that path, please, do me a kindness and don’t. It’s just life. It’s just the life I get- and it’s the life lots of people get. While I’m taking that day to deal with the crapfest of feelings my bizarre body has dealt me, life just kept trucking on, and I’ve got to pick up the thread and catch up. My life is very average, despite the whole artist studio angle, and involves mostly picking up animal hair (in all aspects, it’s just a shocking level of never- ending fluff of all sorts), and outside of my marriage, it’s rather unromantic. 

I tried—- for the longest time!—- to wriggle away from all of this. I think so many of us do something similar, whether we’re dealing with physical illness or troubles of other kinds. I can just work harder. Work longer. Work more. Run more. More pushups. Yoga. Write. Something, anything. Complicated meditation, anything to keep away from it all, but in the end, it always comes down to finding silence, stillness, the small things. I think I pushed myself into at least one relapse, doing all that avoidance work. We are such funny, sad creatures. It is both easier and harder to face things head- on.

My instinct has always been to attack any problem: anything can be fixed by simply working harder. In application, this has proved true roughly 70-80% of the time, and I suspect I might have a higher success rate with an improved concept of work—- and an improved concept of what a solution might be, too. Simply putting my shoulder to the wheel isn’t always going to cut it, that is the thing. Sometimes “the work” is in the sitting, in the being, and in facing even the ugliest of things. I am not made of glass, even though there are days when I feel as though I am a box of nails and broken glass inside: I’ve been around long enough to know that my emotions won’t kill me, I just don’t enjoy feeling them. That’s fine. I can face my own fear and rage and grief and yes, even my own absolute powerlessness, and I will still be here the next day. 

 

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15 Comments

  1. When I was mad about something I used to clean the entire house. I was a mad cleaner. It could take hours to get over the mad. But… at the end I’d worked through it and the house was spotless.

    I can’t do that anymore. It sucks so hard. I’m slowly finding other things to work through the pain, the mad and the bad but they aren’t easy because they aren’t physical. So weird.

    Working hard at learning how to relax. Isn’t that a conundrum. I suck at it. I’m sorry you are in the same situation.

    Reply
    • OH, THIS. I’m an stress & anxiety- cleaner, too. I find I almost always have the energy to clean my kitchen sink, though, and for some reason, a clean sink always seem to make me happy. Even if it’s just a half- hearted version— boiling water, plus white vinegar and salt, soak, then give it a rubdown? I FEEL SO ACCOMPLISHED. Where’s that clean sink= a godly home concept even come from? Who cares, it’s a great pick- me- up, anyway. :)

      Reply
  2. Thank you for giving voice to the real and scary emotions that are experienced by all of us despite the circumstances being different. I love how you write the thoughts that travel through your head – words that have echoed in my own mind during intense grief. I am awed by your efforts and remember to be kind to yourself – sounds like you are doing an awesome job of living!!

    Reply
    • Thank you so much. I struggle a great deal with what- and how much- to share here, especially as it relates to disability & disease. (I don’t want this to become the depressing, All MS Show. Heaven knows, that nasty thing doesn’t deserve it.) I started writing about this disease after I was diagnosed because I didn’t find very many blogs from folks who were earlier off in their diagnoses, though- or because those that I did find were mostly medically- oriented, which, while really helpful, didn’t talk about what I wanted to know, which was how it FELT. :) I worry a little that it’s beginning to be the only thing I talk about, but then again, it’s on my mind a fair bit these days, so at least it’s honest. <3

      Reply
      • Remember, honesty is the best policy and I think the best stories are those that come from our heart.
        I worry that people will think grief is a constant part of my life even after 24 years because my blog comes from a place of FEELING also! I do revisit my experience often but I like you find motivation in giving others a place to validate their feelings, knowing that another has been there can be more helpful than anything. Keep up the good work Sarah.

  3. “So you stop, and sit with them, but then you have to just get on with the rest of it.” You’ve nailed it there. The stopping and the sitting can be really hard. The forced acknowledgement of whatever the issue is, the resisting just working right through it. The sitting has to happen first.

    Reply
    • Sitting is so. Damn. Scary. Of course, not doing it just means things are festering, and getting even uglier. It’s like not cleaning out the fridge, you know? Let that go long enough, and ye GODS. Slogging through all that mess isn’t pleasant, but it’s necessary. I can’t say I always feel better afterward- it isn’t a cure all- but doing the work matters. <3

      Reply
  4. Betty

     /  April 22, 2014

    Sarah, very well said and needed on a day when I am feeling so much pain and still pushing my way through the day. I find that it’s hard to stop and sit and take that time for yourself. In my episodes of pain I still feel the need to do it all, myself. The kids, the laundry, work, clean, the yard work. And then I’m down and out for a few days. Pushing is easier then giving yourself the time and slowing down when needed. Thanks for the reminder that its ok and that we all go through it.

    Reply
    • I’ve always found just pushing through to be the easiest way. It’s such bullshit, and such a trap, too- it just makes me worse off in the end, inside and out. It all comes down to re- learning how to live. Whatever happened to just magically turning into a Grown- Up at 21 and knowing everything forever? I liked that plan.

      Reply
  5. Kate

     /  April 23, 2014

    I love you, Sarah! Thank you for sharing this. Mwah!

    Reply
  6. dina phillips

     /  April 24, 2014

    Sarah, I’ve been quietly reading for a few months. You quantify the experience of pain very well……. I had a horrific car accident 23 years ago that ended in 16 broken places in my bones, two months in the hospital, and 2 1/2 years of surgeries, bone and skin grafts, wheelchairs and crutches. Because I was 20, I ‘seemed’ to bounce back and enjoyed a life with little restrictions, that no one would ever know I suffered occasionally from over doing it or with the weather. But after the birth of my second child, a miraculous blessing beyond what it usually is as my pelvis is deformed from six breaks all the way through and two months of traction, and simultaneously turning 30, the occasional suffering became more frequent. I’ll be 43 next month and the pain is constant. I’ve been officially disabled since 2007. My best day is a normal’s worst day and on bad days, the pain is unimaginable.

    You absolutely need to stop pushing through, it is absolutely a trap. There is nothing a flowery its gonna get better can do and there is no way to be tougher than the emmeffer that progressive pain is. You do have to re-learn how to live and how to do everything, nothing is spontaneous. The biggest obstacle will be you and feelings of guilt. The biggest justification for that pushing through is you feel like you should, you feel like you need to hide your pain and tough it out. There is so much guilt in taking the pre and post doing something time to rest. There is guilt in everything you do and don’t do. Everything you can and can’t do. What you’d like to do. What you wish you could do. What you will never do again. The people in your life, ones you love and just acquaintances and even complete strangers, will make you feel guilty and project their ideas of you at you and try to push you to live up to them. Most of those people are just ignorant, not stupid, to your experience.** Another double edged sword, no one understands your pain without you telling them and the more people you tell and the more you talk about it, you are perceived as a moaning whiner. And the guilt just piles up and compounds and leads to angst and frustrations. Its a heavy burden that spoils the good times if you let it. Its sneaky and it taints your decision making ability, causing you to force yourself to do things that you will pay so much for. Its ok to make yourself the priority. Its beyond ok, its necessary.

    I spend 90% of my life in bed on a heated mattress pad and I pick carefully every little thing I do. I don’t make plans and just concentrate on getting through today. I paint and do puzzles and do what I can to distract myself from the pain. I put up shelves by the bed for paints and supplies and have folding craft tables to accommodate my convalescing. Some days there is no escape from the pain and I just get through each hour, making deals with myself, keeping sane as I can. I (weirdly) love the smell of sawdust and I’m interested in woodwork and I will find a way to create some things. I’ve let my flowerbeds and gardening that I loved go. I still plant some flowers, but not like what I used to or at the level I’d like. I’ve learned to live with some messiness. I’ve learned to accept help and to be satisfied with that help. You know, just because my husband doesn’t do things the way I would, he is helping. (That was hard to do!) I’ve learned to say no a lot. There are a few ladies at my church that believe, because I’m attractive and try to be pleasant, that I don’t do quite enough during our hospitality times. I’ve learned to keep telling them no when they ask twice and try to push me. (See, the guilt I felt for saying no at first to them would force me to relent and inevitably regret.) I’ve learned I can endure almost anything and even thrive with a completely amended life. I am even thankful for the pain. I am a much different person because of it. After the first few years of pushing too hard, too much, too long, I re-learned how live within the limits that I must live within. I know so much more about myself and its put me in a position to observe others and learn more about human nature. It forces me to be completely honest with myself, which is so much harder than it sounds. To the world and sometimes to me, it sucks ass but its a life and its mine. The alternative is so much worse. I know the only release I’ll get from this pain is death, but I have so much life to live. (I can’t wait for grandbabies) And I truly need more time because it takes me twice as long, or more, to do everything.

    You are doing great Sarah. Thank you for sharing your experience.
    ~Dina

    ** And some people are just assfaces and always will be.

    Reply
  7. your blog really makes me work hard and also care for others and every time i look at your blog in the morning it brings me happiness and i love that about your blog thank you so much

    Reply
  8. twieder

     /  May 14, 2014

    There are days I wish I had the energy to kick those kids off my lawn. In the mean time, maybe an electric fence with do the job. At least, that what I think Matlock would do.

    Reply
  9. flcupcakegirl

     /  May 23, 2014

    Sarah, I found your website through an article you wrote about Topamax. I have been taking it for FM. The way that you describe living in a body you don’t know, was so powerful for me. People who have never dealt with chronic pain, have no idea. I am a massage therapist and have had to give up my passion in life, I was born to be a massage therapist!! In the 8+ years thatI’ve dealt with pain, fatigue, grief,(I grieve the loss of the active life that I had.) One of the things I wanted to share with you is, I also, knit! All the time! I feel so lucky that I have my yarn and needles.Thanks for sharing your experiences through this blog.
    There, but by the Grace of God, go I.

    Reply

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