Multiple sclerosis

Grace notes

I’m reaching the three-month point of living with multiple sclerosis.

There have been more downs than ups, for sure, especially if you take into account all of my klutz-inspired spills. If I were a publicly traded company, this quarter would probably scare investors away.

But I’ve learned a lot about myself. You must be used to my navel-gazing if you are reading this, so permit me a little self-inventory.

I’m stronger than I thought. I knew I was the type of person to never give up. But I didn’t know what that really meant until faced with the prospect of not walking. And then it became a matter of will. And then being able to face this reality – life turned upside down and inside out – took tenacity that I wasn’t sure I had.

I’m not that big of a weenie. I really thought I’d have a problem with the shots. Don’t get me wrong. They suck. Big-time. But I’ve learned to buck up and take my lumps like a big girl. Ditto on the MRIs. And the spinal tap.

I can still be grateful. In the face of all that’s bad, I still feel pretty lucky. I have a husband who adores me, a family that loves me, friends who care for me, a job that challenges me, a life that enriches me, and pets that tolerate me. What else matters?

I still have hope. No, I’m not always optimistic. But deep down I know that things are going to be OK.

I can be assertive with strangers after all! This is a big one for me. I’ve learned to be my best advocate and stand my ground. The world can be a cold, churning machine, but I refuse to let it swallow me up whole.

Going forward, there are several to-do’s on my list. One is to get involved in the local MS support community. It’s taken me this long to wrap my head around the concept that I have MS.

An extension of that is to do the MS Walk in April. I’d also like to dance to show the world the MS doesn’t have to close the door to an active life.

I’d also like to make an impact in the larger sense. This blog is more for me than anything else, but if a newly diagnosed MSer finds this and finds a little comfort, then I know it has all been worth it.

12 thoughts on “Grace notes”

  1. Hi! I have been reading your posts. I was also diagnosed recently, in August 2010 but I have had MS for over 27 years. At the first attack, I was not diagnosed, there were no MRIs in those days. Symptoms began again in the fall of 2009 and from there on it was a slippery slope. They increased quickly. I must say, you have adjusted well. I am a little slower to even accept it let alone take any meds. You are a bit of an inspiration. Does it help to talk about it? I don’t do a lot of that but maybe I should.

    1. Wow – 27 years! That’s a long time to live with the uncertainty. Although I can definitely point to certain times in my life when something was amiss health-wise and say that was probably MS, even back then. It has helped me immensely to write about it. I don’t know that I’m adjusting that well – I have plenty of days that border on depression. And I am still so frustrated by the little things – like not being able to wash my hair with both hands because my right one is numb and I can’t feel textures with it. But it gets better, the managing it and accepting it, and letting people in has helped with that.

      1. Oh, I wasn’t in doubt for 27 years. They told me I was ok, it wasn’t MS so I forgot about it and raised my children…so perhaps that was a blessing. No big attacks, sometimes little things that I ignored.

        As I mentioned, I have been reading you for a while…I hear your depression sometimes and certainly understand it. My neurologist says I am not coping well, I am not accepting this MS. I cry a lot. My tongue is tingly/numb, I haven’t really tasted food for many months. I eat, but I don’t taste it much. My head is never clear. I am having cognitive problems. And I’m afraid that will get worse. Talk about fear!

        Have you started MS drugs? I don’t want to; I don’t want daily injections. If I loose my job, and I think I may, how will I pay for them.

        MS is a BIG and BITTER pill to be forced to swallow.

      2. The tongue thing has got to be so hard to deal with, to lose one of the most important senses we have. When I lost most of my vision in my left eye, I was freaked out. All I can say about the treatment is that without it, now that you’ve had exacerbations, you will probably have more. At least that’s what I gather from talking to my neuro. And with medicine, you give yourself a fighting chance. I do the Betaseron, which is every other day. I worry about the job thing, too. But check out the ADA and how it applies to your job. But here’s how I see it – If the treatment keeps me well enough that I can stay on my job and keep insurance, then it is worth it. Also check into getting short-term disability in case you need to take longer than two weeks off. And most of all, stay strong. By that I mean reach out for help when you need it, and don’t go too long with those feelings of despair – those will kill you faster than anything. At a certain point this becomes a mind game, and you have to be able to ward off the negativity. Take care!

  2. The most important thing about a blog is to talk about yourself and help yourself. The internet is a like a big support group, and you wouldn’t go to a support group and not share your feelings or not tell the truth, right?

    Navel-gazing is what makes a blog good. You’re talking about what you know best and what we don’t know at all, your own personal experience.

    I enjoy reading everyone’s feelings about MS, because I can relate to all of them even if on the surface they seem different form mine.

    1. Matt, you are so right. What a support group. – and I imagine it will only grow as I become more involved in the online community. It’s reassuring to know we’re not alone. Thanks!

  3. i was diagnosed in september, sort of…it was only truly official in october after the dreaded lumbar puncture… not fun at all in my book! they couldn’t pay me money to do that one again ha!

    anyhow, i know what you mean about wrapping your head around the idea of having MS. i’m trying to do that. it’s a big one. i’m not quite there but working on it. my blog has been my sanity. i know people in my life get sick of hearing about it…well, maybe not… i’ve made a point of not talking about it much. when people ask how i am, i have a hard time believing that at this point they really want to know… they get the standard “i’m fine”…

    i feel a great deal of pressure to make life choices and decisions. logically i know this isn’t the right time to do that. i need to let it all settle within me before i go changing stuff around…. anyway, i love your blog. i’m lucky to have found it. i feel as though we are sort of traveling this journey together… the new MSers….

    1. Thanks Sherri! We are soul sisters navigating this new territory together. I know what you mean about the blog being a refuge of sorts. I have so many thoughts swirling around, and it’s good to get them out, no matter the audience. I love reading yours, too. I need to make it more of a habit to comment on posts – maybe that can be my New Year’s Resolution!

    1. Yay! I’d love to get a group together, if only because then we can come up with a crazy name and make T-shirts!

  4. I’m a fellow naval-gazer, though from the point of view of the parent of a newly diagnosed MS patient. My postings are more joiurnal like — the blow by blow roller coaster that has been the last four months. Hope you’ll check out my blog, too!

    1. Thank you for posting – I’ve recently wondered how my MS is seen through my parent’s eyes. It must be beyond difficult to see a child endure this. For some reason I think of that scene in Steel Magnolias, the Sally Field monologue, and that helplessness of knowing that she’s able-bodied but it didn’t matter. But you are so strong to post this experience you all are going through. It helps…it really helps.

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