Sep 132012

-I watched the X Factor last night… there are some folks on there from back home. How fun! They really are quite good. Their family was in charge of the music at church… the whole family is into music.

-Coach has been coming home pretty early the past few days. By early what I mean to say is that there is still a little hint of daylight left in the sky when he pulls into the driveway. It’s been nice. We actually sit down and eat dinner together.

-Football tonight – Thursday Night Lights.

-My lip is numb again. The last time it was numb was due to that lovely, painful thing known as trigeminal neuralgia. At least I haven’t had that pain in several months. It’s weird that the numbness has returned. When the TN kicked my ass last time, the residual numbness lasted for just over six months. It’s that kind of numb that is normally caused by a visit to the dentist… that type of numbness that makes your lip feel like a big fat slug stuck to the front of your face. Dribbles, crooked smiles, and the blood & scars from biting that slug.

-I’ve been thinking about life’s lessons again. The one thing that I keep reminding myself is that nothing is permanent. Everything changes. Always. There’s no getting around it. That’s true of everything & everyone, chronic illness or not. Knowing this tidbit of wisdom certainly does not make any of this any easier to accept. I’ve studied so many various philosophies over the past 15 years or so. You’d think some of those studies, beliefs, etc. would help me out now. Not really. I just sort of scoff at it… for now. I believe that eventually I will become centered once again… emotionally centered. As for being physically centered? I don’t suppose that will ever happen.

-So many people have told me to accept. Accept what? That my body hates itself to the point of self-destruction? How exactly does one go about accepting that? If you know, please fill me in. I just don’t see any level of acceptance happening. I really don’t. For those who tell me to find acceptance – I’d gladly switch places with you so you can show me how it’s done. Funny how the ones who have the most sage advice, the most worldly wisdom, and the eclectic knowledge of the universe are the same ones who refuse to lend a hand… refuse to see things for what they are…refuse to learn anything about this disease & what it might mean to live with it. They are the ones who tell me to work through it, push on through it…you got this! Bullshit. It falls under the same idea that if men were the child-bearers the human race would cease to exist. It’s easy to sit beside the bed and say “breathe! puff puff eeee” (not sure how to spell out Lamaze breath sounds haha) Anyway, you get what I mean I’m sure.

-At my core, I’m happy. I love the life I have for the most part. I have Coach… I have a home I love, we are in a place we are enjoying. I enjoy being home & living in days of creativity. I hate that my body is failing me and that it dictates what each day holds for me. I hate that there are so many things I can’t do, or can’t do safely anymore. Things like going swimming on a whim. There is a pool at the end of our road. It’s so cool and refreshing. I want to just go dive in and swim. But I don’t feel safe doing it unless someone is there with me. And not one of the other residents here – I don’t know if they’d be able to drag my limp ass out of the water should I need it. So I have to swim when Coach is home & has the energy to go down to the pool with me. That dependence drives me nuts.

-I hate that I’m facing 14 hours on the road by myself. I don’t feel safe doing it. I think about all the things that could go wrong with my body. The normal risks of driving are enhanced by the possible bad things that my body could do during the time on the road. I think about things like a big relapse – THE BIG ONE – hitting me while I’m driving some off the map spot on the highways… you know, THE BIG ONE… lose vision, paralysis, all those types of things. What the hell would I do? And I would never ever forgive myself if I had an accident & injured another person because of my stupid hateful body.

Life is good… I am happy. I am loved. I will end there.

Being an adult is like looking both ways before you cross the street and then getting hit by an airplane.

  15 Responses to “Accept What”

  1. Actually, I think we are in alignment with our thinking. You are right — words are inadequate, ‘er, too easily misinterpreted when we try to convey such “deep” thoughts.

    One thing’s for sure – MS sucks. I accept it, but I don’t like it.

  2. The opposite of accept is not to fight, it is to deny.

    MS is now a part of your body. Your own personal bundle of energy. The same body that creates your art, and waters the plants, and cooks dinner. It is the same body (and mind and soul) that accepts a remission, a good day, a lovely sunset, a date night with Coach.

    You accept drought, poverty, blemished fruit, a dog that gets you up at night, a lost game, long weeks alone when your husband is working.

    So why all the resistance to accepting MS? You are denying a part of your SELF. Better to contemplate its meaning in your life.

    But that’s just me. I’m not sayin’ you have to LIKE it, or anything crazy like that. Please don’t sic Angry Squaw on me. 😉

    • I don’t like the word accept… because I’m not sure it accurately mean what I’m feeling. I accept the fact that I have this disease…. I don’t like it. I don’t live in denial… but am learning to incorporate all the ins & outs into my life…

      it’s all so confusing when it comes to words and trying to convey the feeling ol

      MS is now a huge part of who i am… it shapes my days, my thoughts, my feelings… it dictates where i go & what activities i choose to participate in.

      i just get so mad! so flippin mad…. i’ve learned not to fight so much as to go with… it’s easier to go with it, making adjustments, than it is to spend all my energy fighting…

      i’m just rambling now trying to make sense of a feeling that is just outside my reach….

  3. I have been told far to often that I should accept it and move on. Accept what this week? And move how? Dragging my non functional leg behind me?
    It is ironic really. The nature of the beast changes. Which is good – because the b awful think I have today might be gone tomorrow (or next week), and it is bad. I cannot really plan ahead because I have no idea what my body will allow me to do. Sucky, sucky, sucky.

  4. First off, let me say, I hear you loud and clear, loud and clear.
    How do you accept what changes so often? We accept change that stays. When we think of change we think of going from one long term pattern and adjusting to another way of doing things that will become a long term pattern. Sometimes what happens to the body isn’t change, its assault. Assault is a whole different animal from change.

    My other thought is more along the lines of relating in a way to some of what you said. My body may allow some of these things but my personality disorder will not. Because of the pd I have to be extra cautious when driving because I don’t want to kill anyone. I personally can’t do public transportation. Many times I require someone to shop with me. There are times when I’ve been triggered by something, switch personalities and I had no idea how to get myself back home. I could be 2 blocks from home and not know it. Someone could ask me the most simple information and I’d be unable to answer it. “what’s your name? ” I have no answer. Sometimes my pd robs me of independence. I need a friggin chaperone to make sure I get home, make sure I paid my bills, eat something, etc, etc, etc. The losses are too many to list, but independence and dignity are right up there at the top.

    Then there’s the rape of Lupus and all that comes with it. How would I accept it? How do I accept assault? I don’t. I accept tiny moments that have nothing to do with my illnesses. I do not accept that Lupus is going to claim my life. I do not accept that. Because I refuse to accept that this battle has been called, it doesn’t mean I reject some of the wonders around me. That was why I did my happiness list. My body and mind continue to assault me. I didn’t want to forget the moments when there was something good going on too. Sometimes the only good for the day may be that I got to see a cardinal outside my window. For me, and I speak for myself only, but for me, I accept tiny wonders like that. It’s the only acceptance I can understand in a life such as mine.

    I hope something I said made sense there.

    • It makes absolute sense Faith. You have so much more that you deal with on a day-to-day basis than I could ever imagine.

      I worry about getting lost or not being able to find my way home but because of cognitive issues. I wrote my address down and printed out a map of the area so that maybe I’ll have enough sense to read the map. But for you, I could see where that might not always work. Not everyone may know you have the map or address stashed for those times. Getting to know you has been one of the more cherished things in my recent days. Learning about you as a person, not as a person with a PD or with lupus…but as you.

      Lupus… the dreaded lupus. I must admit, that is one disease that scares me to hell and back. I’ve been told that people with MS often develop lupus, RA, or some other IDD to along with the MS. Fun shit man.

      I, like you, accept the magic in each day, or in a moment of wonder. But the disease? Nope. There is no magic, or good, or acceptance that I can see in it at all. I enjoyed reading your happiness list… it made me stop and think about all the happy things in my life, my day, in a particular moment. It served as a great reminder for me as I’m sure it did for many.

      • It occurred to me that no one really has to say that people with a chronic illness should accept it, its a societal expectation. People looking from the inside out expect us to pull up our big girl panties and go on. It inspires THEM and it is expected of us to accept. I don’t know, it just crossed my mind a few minutes ago that a person doesn’t even have to say it to us for us to feel its pressure.

        BTW – I had a service dog that went with me everywhere, his name was Captain Crunch. He was 128 lbs of beauty and loyalty. There were times when I dissociated in public and he needed to get me help. The boy would walk up to a stranger and get their attention. There was a note attached to his collar that told them to call a friend who would come and get me. I’d kill to have another trained service dog like that. Even without one I do have that information written down so that if it ever happens again I can maybe ? know to give that note to a uniformed officer. Your info is written down for a different reason but we both know how relieved we feel when sitting beside the loved one who picked us up. We’re relieved but also humbled. Same symptom, different reason, similar emotional response….and yeah, it sucks.

        • Exactly!!

          expectations…. pft

          Captain Crunch sounds like a wonderful creature…. How long has it been since you had him? And how cool that he would know when you needed that assistance…. he knew when you dissociated?

  5. I almost started to say that I can’t believe anyone would say that to you, but actually, I can. Some people are just so freaking insensitive, it’s unreal. I can’t even begin to imagine what it’s like being you and having your body going through such terrible things. But I do commend you for getting yourself out of bed everyday and living your life the best that you can. I think you’re really amazing!

    • People are so incredibly mean much of the time. But then there are those who are so incredibly nice and caring. It has really been an incredible journey in some ways. I’ve learned more about human nature than I thought possible, including my own.

      As for getting out of bed – some days it’s a drudge. Some days it’s a battle not to go back to bed…. but then I remind myself that life is not in that damn bed. It’s at my computer LOL

  6. I so understand how you’re feeling right now. I go through these bouts quite often, but I’m too afraid to stay there. I fear what I might do if I got too down.. Hang in there — we’re in that boat with you, bailing as quickly as possible!

    • That’s what I love about you guys Muff! Everyone helping my bail!

      Funny thing is that I don’t really feel all that down. More contemplative maybe… just sort of assessing things in a big scale. I shouldn’t do that but it’s something I’ve always retreated to for some reason.

  7. Just who in the holy FUCK would ever have the ignorance or the balls to dare tell you to accept this bullshit?? Whoever it is, tell me so I can kick their ignorant ever lovin’ ass!!!

    You do NOT have to accept this bullshit. As a matter of fact, if you ever DO lay down and “accept” this bullshit, I promise to be the first person there kicking YOUR ass!!!

    Stay pissed off and fighting and gnashing your teeth at it!! That is the only recourse you’ve got in keeping you, you.

    I love you girl and I miss you like crazy. I am so sorry I’m a slacker friend and not worth my weight in dog shit.

    Keep fighting the fight, cussing the beast, loving that man and fuck the rest.

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