on limits and acceptance

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With all of the bedrest I have had lately, I’ve spent a lot of time sitting and thinking. A few of the things I have realized:

1.   I am not good at accepting my limitations. This relapse was almost guaranteed, I think. I could see its beginnings right after the fire: the stress of the fire and the dissolution of SG kicked up symptoms that I should have immediately addressed, but I dismissed them because I was too busy. I should never be too busy, but I forget that this body is breakable, is vulnerable, is stronger than my willpower: I forget that my disease will conquer me and my plans. I forget this because I don’t want to remember it.

2.   I have no real idea what my limitations are. It doesn’t help that in this disease the goalposts are constantly shifting: what was perfectly fine to do yesterday may not be okay to do today. Parts of my body that functioned last month may not function next week. I say that I’m new at this, but in talking to other people with MS I learn that while we get better at learning our subtle body cues the mutability of our illness keeps us all permanent beginners: there is no real graduation to Expert Level in MS.

3.   I don’t have a choice when it comes to self- care. Self- care is not the same as self- indulgence. It’s funny: I have been thinking that for the longest time and I’ve never realized it. Self- care is not being lazy, or being self- indulgent: it’s healthy. Ridiculous. I’ve been driving myself into walls- through walls- for far too long.  Self- care will also not make me too weak to fight my MS, something I’ve been concerned about since my diagnosis: I’ve been so afraid that if I took a moment to stop, my disease would begin to chip away at my body, and that I wouldn’t be able to re- coup my strength. There can be a balance; I just need to find it.

I purchased a wheelchair in the interest of self- care. I’m not happy about it, but some days it does come down to saving the energy I have: do I want to be walking around and only have 2 hours worth of energy, or do I want to be in a wheelchair and have 6 hours worth of energy? This is probably one of the healthiest decisions I have made in a long, long time. It doesn’t sit easy, and I still haven’t used it, but I have the chair, and that’s a start.

4.   I don’t need to do everything all at once. I have a million things going right now, and I love them all, but I need to pace them; this is part of self- care. I have been living each day as though I might not get another- eating life by the fistful. There’s a beauty to that, but it burns me up, and threatens to burn me out too fast. I can’t sustain that with this body, which breaks my heart, but is the truth. I can’t sustain that. I need pacing, and grace.

5.   Help is possible. I’m learning this one, which is so hard, and insanely painful. “Just ask for help,” is something I hear more and more these days, and I’ve been fighting for the words to describe how privileged this phrase sounds to me. I know it comes from a good place, a loving place, a helpful place, which makes it even harder, but “just ask for help” is frequently said by kind and gentle people who had parents who helped with their homework. I had a friend recently tell me they’d only seen me sick a few times, that they’d only seen me use my cane several times out of pride. This struck me as an example of my lack of vocabulary for illness, need, and vulnerability. I have no way of asking for help. I don’t know how that is done, how that is negotiated between people. I have done this thing, as I have done most everything since I was sixteen, alone: I don’t know how to ask for assistance. How do you tell someone you need something? How do you ask, and not fall completely apart?

I am surrounded by the well- intentioned and the loving who tell me to “just ask” for help if I need it, but it is the asking part that is still so foreign to me. I frequently don’t even know how to identify when I need help, because the idea of asking for help isn’t something I understand. I don’t ask my husband for help.

I’m learning to accept help. I am even learning to ask for it, although I’m awful at it, and I’ll frequently struggle with a task for far longer than I need to, expending loads of energy on something stupid, like opening a jar, when there really is no way my hands are strong enough right now to perform that task. I recently had my friend Auggie over for beers and had a quiet moment of personal triumph because I asked him to open the bottles: I am that bad, people, but I am getting better.

One of the best things about the Solumedrol experience was that it took me completely out of my work. I needed to relinquish all of my tasks- absolutely everything- and I became completely useless for weeks. I needed to rely on my family and friends: I needed to ask for help. I surrendered, and it wasn’t the end of the world. Everything worked. There were problems, and they were fixed. There were squabbles, and people made up. The world went on turning, and I was okay. People came out of the woodwork to help me, and while outside of work I wasn’t able to say what I needed, I was able to take what they offered, and that was good.

Having Sam administer my infusions was like that- like asking for help, being vulnerable in a new and terrifying way. In case you haven’t noticed yet, vulnerability isn’t my strong suit, but I’m not alone in that one- most of us like to feel strong, especially when we aren’t. There was this beauty is what we did, in my sitting down with my arm extended, in his calmly, competently setting up my line each morning, in setting up the infusion, in him flushing my port post- infusion. This is what love looks like, I’d think, dizzy, covered in blankets, grateful, holding his hand. Being that scared, and feeling that exposed, and doing it anyway: we didn’t have a choice, but it brought me to a new place- one in which I hope I’m better at asking for and accepting help.

6.   I really, actually, truly have MS. I know I’ve talked about it, and written about it, and I even have all the MRIs to prove it, but it is easy to forget this. Part of the forgetting is because I don’t want to remember it: it’s not the worst disease in the world, but it’s still a pretty crappy hand to be dealt, and not something you want to dwell on. Unfortunately, in order to be healthy, I do need to keep it in mind. The other part of the forgetting happens because when my medication and self- care is working, I feel relatively normal, and I begin to think, “Well, maybe it wasn’t as bad as I remember. Maybe I am really okay. Do I actually need all this stuff, all these accommodations?” WRONG. WRONG WRONG WRONG WRONG WRONG, Sarah.

I have multiple sclerosis. That isn’t going to change, and it isn’t going to go away. There is no cure, and I will have this until I die. This is my reality, and it is something I can’t forget; I will have to remember this and manage it for the rest of my life. It is okay. It is okay. Nothing will change this, and it isn’t okay because I can make my life into something that looks like a non- disabled life; it’s okay because a disabled life is perfectly fine. It doesn’t look like a lot of other lives, but I like my life, and I’m tired of fighting for something that is silly, because isn’t the reality in which I live. My reality is good. Better than good, my reality can be honest and raw and true if I stop trying so damned hard to push myself past my own limits.

I still have no idea where those limits are, but I have a wheelchair now, and I am beginning to learn how to ask my husband to help push me through rummage shops to find a pair of antique binoculars, so at least I can start looking for them now. It isn’t much, but it’s a start, and I can even start with a little bit of style.

  One thought on “on limits and acceptance

  1. Elisabeth
    March 10, 2012 at 4:28 pm

    I want to suggest that you watch a short video, a TED talk, on the issue of vulnerability which I, as a therapist and a person, found very powerful. You can find it at http://www.ted.com/talks/brene_brown_on_vulnerability.html. I think this might be helpful in your journey. Thinking of you and sending strength and courage. Ellis

  2. Donnell
    March 11, 2012 at 10:10 am

    Thank you. You are amazing.

  3. March 12, 2012 at 8:59 am

    Sarah, I will be at HYP, and I will be helping you unless you tell me not to. No need to ask me. I love you so much and hope that you’re feeling well.

    Can’t wait to give you a healing hug.

  4. March 16, 2012 at 2:28 pm

    I don’t think you’re alone in having a hard time asking for help. I am watching my small daughter grow into the “I do it myself” stage, and I wonder if we ever really outgrow that?

    I also think that we say, “Just ask if you need help,” instead of just saying, “Here, let me do that for you,” because we’re afraid of implying that the other person can’t do something for him- or herself and thus insulting or offending them. So perhaps we all need to work on this… both asking for help when we need it, and not being so afraid to step up and just do when we feel our help is needed.

    Peace & healing energy to you.

  5. Melissa
    March 23, 2012 at 4:14 pm

    Sarah, just found your blog and want to give you a big hug.

    I’ve just discovered that eliminating wheat can be beneficial for many inflammatory diseases including MS. I was just wondering if you’ve investigated it at all. I myself just cut wheat (and dairy) two weeks ago and am curious about others’ experiences with it.

    Best!

  6. Doris
    March 26, 2012 at 3:46 pm

    I got here in a round about way…bought some fiber from you yesterday at HYP, joined the cephalopod group on Ravelry, found your blog. Your post really hit home with me. I have eczema, not nearly what you are going through, but it is aggravated by stress also. I have always been great at helping others, not so great at asking for help and there are certainly times that if I could do that I would reduce my stress. I don’t think anyone else is weaker when they allow me to help them, but see myself as weak if I accept help. How crazy is that?I have a wonderful husband and two grown sons who would help if I asked, but sometimes I guess I am expecting them to read my mind…and even then I say “No, I can get that or do that or take care of that” because I don’t want to appear vulnerable. I will be thinking of you and sending good thoughts your way (can’t hurt) and trying to become more vulnerable myself. Thanks for sharing in your post.

  7. katyknits
    April 10, 2012 at 2:58 pm

    Sarah, it’s good to read your posts. I can insert my own stuff in there. You have a way with words. As far as your latest post, I hate the smell of marijuana personally. I probably can’t even spell it right because I have never even tried it–and I am 41. But as the parent of a disabled child (autism)–I am a firm believer in fighting with everything you’ve got. But I also know how tiring it gets fighting all the time but that would be my blog post.

    So, keep on keeping on Sarah! Hugs!!

  8. May 2, 2012 at 4:37 pm

    I am so in awe of the clarity, sincerity, eloquence, and poetry of what you said in the video. I’ve been a fan of your yarn for a while but now I’m an all out fan of you! Thanks Sarah and keep up the good work on all fronts!

  9. March 20, 2013 at 8:06 am

    This is exactly what I needed to read this morning! I don’t have MS, I have lupus nephritis and have been diagnosed about little over a year now. My kidneys crapped out last year and then I bounced back. I bounced back hard. I thought I was doing just dandy and could push my limits and forget the disease and go on with life…….
    Yeah that worked well.
    I’m going on day 9 in the hospital as I type this cuz my kidneys finally said “seriously? SERIOUSLY! knock it off. Go get better.”
    Last year my doc (and we try not to get mad about this…..) told me not to file to disability. That i’m young and I’m fine. My new amazing team of docs this year….horrified that I was told that. So we are now actively trying to get me the care. support and things I need. Seems so weird to pray to be declared disabled. Such a volatile range of emotions right now.Also because I’m on some crazy high steroids so one minute I’m elated and the next I’m crying and the next I want to punch things..

    Any way…. this helped me so much today. I came across another artilce of yours on some other site and then found your blog and it’s really helping me turn my icky mood around right now. This post espeicially. Summed up a lot of what I’ve been thinking and have such a hard time saying. Especially about asking for help and relaying on others. So hard to do. Giving up our independence …… ugh.

    But this past week i’ve had to accept help—let others bring me things. And you are right, sometimes things don’t go the way you want, or smoothly. But… if can just let it go and let it be, somehow it all works out doesn’t it.

    Thank you again 🙂
    Jennifer

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