Personal circuit

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Personal circuit

Postby Miss_Feisty » Fri Nov 07, 2008 12:14 pm

Circuit:
A circular journey or one which begins and ends at the same place

MS is a circuit for me, there is no moving forward yet, just a continuous loop of symptoms and medicinal trial and error.

I walk in circles, I learn information and then learn that information is wrong. I try new things to feel better then end up feeling worse. I bang my head repeatedly searching for my happy place.

I'm not normally unstable but I'm up then down lately. It more or less has to do with attempting to live normally then feeling disappointed when the body decides differently. I appreciate the good days, but I want more of them...I'm greedy that way.

I can't....was never a part of my life before ms. It's a tough journey.

I don't feel sorry for myself, I just want to scream at the world, I want to tell someone off for permitting me to have to deal with this. I am angry.
I am so very angry, like a child not getting what they anticipated for good behavior. (throwing a virtual tantrum as I type).

I just wanted to share. I know life will go on and tomorrow is another day, but we have our moments regardless of how we adapt to this mess (insert bad word of choice here). I want out of the loop....no more circuit.....I want linear movement....to proceed forward unscathed.

Thanks for listening.
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Postby robbie » Fri Nov 07, 2008 2:41 pm

You really have the words for this Miss Feisty, I have had the same feelings for almost 16 years now but being in the wheelchair now helps close book on this journey. I wish all the sickness in this world would go to all the murders and pedophiles and the scum that are not fit to be alive and leave the good people alone.
Had ms for over 19 years now.
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Postby Miss_Feisty » Sun Nov 09, 2008 9:24 am

You have a good point Robbie. You must have worked through quite a few things in sixteen years, what keeps you going?

I can deal with most things, but frustration isn't one of them. I keep waiting for it to pass. I keep hearing "it could be worse, there are worse things".
Yes, there are worse things, like starving puppies and dying children.

The "worse" things story is not consoling, it's like telling someone at a funeral....it could be worse. Doesn't make sense. Grief is grief.

Good grief Charlie Brown, I hope this passes.

(think I posted this in the wrong forum category....I'm such a newbie)
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Postby cheerleader » Sun Nov 09, 2008 9:58 am

You're in the right place, Miss Feisty. Post on....
Your circular analogy is beautifully put, quite eloquent.
I feel for you. My husband often expresses the sorrow of having to say goodbye to his youth, his health, his old abilities-
and hello to the unknown.
He deals with neuropathic pain on a daily basis...some days better than others. Yet, to the rest of the world, he looks pretty much the same. An occasional grimace, elongated time to get out of a chair or across the room. And everyone (sometimes even me) expects him to soldier on and be a good sport. Because we hate to see him hurting, and not be able to make it better. I try to cheer him, because, quite honestly, it makes me feel a little more in control.
This feeling for you will pass. It will come in waves, but it won't be with you every day. It will be bearable.
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Miss_Feisty » Sun Nov 09, 2008 12:53 pm

Thank you Cheerleader....I will trek onwards.

I have come to learn your point ....that you don't like to see the other person suffer. And in many cases the ms'er doesn't like to see the sadness in the person who sees them suffer.....oh here we go...another cycle in the circuit.

You are wonderful to be such a positive influence in your husband's life.

You are so right about control, there never seems to be a feeling of what to do to make it better. You may not be in control of what the person feels but you certainly can control how you make them feel. It does make a difference.

There is no drug that can offer the same effects as support from a loved one. Or even from a group of strangers on a message board online!

I'm curious, as a partner of someone with ms, did you go through the grieving as well? Did you have to work through your own adjustment period?
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Postby cheerleader » Sun Nov 09, 2008 3:04 pm

Miss_Feisty wrote:Thank you Cheerleader....I will trek onwards.
I'm curious, as a partner of someone with ms, did you go through the grieving as well? Did you have to work through your own adjustment period?


yup. Same stages of grieving I went thru after my brother died-
denial, anger, bargaining, depression and acceptance. Except they aren't cut and dried phases. I sometimes hop in and out of them. At first, I was really mad at healthy couples...furious at the older people I saw at the gym working out, couples who were fighting over really stupid, inconsequential stuff. Just pissed me off!!! How dare they be able-bodied and not appreciate it! Why did they get bodies that worked? That was the weirdest stage, because I'm not an angry person...but I was livid.

As Jeff got some stability, and I saw that I wasn't going to lose him, I hit the depression (around the time I started posting on this site) Found it hard to talk about this stuff with friends and family...they didn't get it.

Now I'm at acceptance and even feel some level of healing going on, as I try to help other people. But I do have my bad days. I try not to imagine the future, and live in the present moment. Easier said than done. It still kills me to see Jeff in pain. As a Christian, my faith's been rocked and then strengthened, as I now understand why my savior needed to be a wounded, suffering healer. He chose to hang out with the losers, the sick people, outcasts, the folks that made "normal" people uncomfortable- or depressed.
So, for learning that life lesson- I'm thankful. The rest, not so much-
keep being feisty...
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby TwistedHelix » Mon Nov 10, 2008 8:23 am

" … there is no moving forwards… I bang my head repeatedly searching for my happy place… attempting to live normally then feel disappointed"

Oh, Miss Feisty, you've summed up what so many of us feel or have felt so often. You are grieving for what you have lost and fearful for what you might lose, and afraid because you don't know what to expect in the future.

Your words I quoted above testify that you are doing the most natural thing in the world: you are fighting to get back to where you once were, or to begin moving forwards to what were once your goals, and I believe this is what is making you so unhappy. The circle will only break when you begin to accept that now you are on a different path and everything has changed – I know it all sounds a bit Zen, and it's very, very difficult to do, but letting go can really liberate you.

I'm not saying give in – we must never do that – just that if you learn to roll with the punches they will hurt less, and that if you can live within this dreadful illness you will have more of a sense of control than if you lock yourself into an unending battle against it.
Dom
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Postby Miss_Feisty » Sun Dec 14, 2008 12:35 am

Twisted Helix: Your thoughts are correct and your words sound as if you know where I'm at right now.

It is not easy, but the days get easier.
It is difficult to be a trained goal setter not knowing what will limit success. I am in the process of retraining my brain to achieve less than before, but to perceive it as, achieving the most I can for the moment.

Coming to terms must be the most difficult thing I've done in my life, I'll be glad when it finally happens naturally.

Thank you for your words of understanding.
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