Tuesday, June 19, 2012

The Five Best Things I Have Done Since Being Diagnosed with MS

Marie Cooper
Writer, MS Renegade

As I noted in last month’s post, the mistakes I made since being diagnosed with MS were all pretty big and dramatic. The best things I have done since diagnosis are mostly small and practical, banal even, but they helped all the same.

Best Thing #1: Writing my blogs
                                                                                                
Hands down, blogging is the best thing I’ve ever done for myself, period.

I have been writing since I was old enough to know what it meant, but I never made the time or had the courage to put it out there or try to have anything published. 

Then came blogging. I had been thinking about writing a blog for a while, but I was really apprehensive. I took my time, did a lot of preparation and then, nervously, took the leap.

Well, I have had the best time writing these blogs! My readers are utterly wonderful and many have become true friends. I have received feedback that is so touching, so kind and so encouraging it has been a real gift. 

My point here is, do what you love. You deserve it. It’s time. When we have a chronic illness, it is easy to fall into a life that is limited. We don’t feel well and everything is an effort. But try and ask yourself, what is the passion that you have been too busy for? This is the chance to cultivate the things that are most meaningful to you. 

Best Thing #2: I acknowledge what my body is telling me.

Me? Listen to my body?!?  Hahahahahahahaha. The only thing I ever listened to was the voice in my head that ran persistently into the future, telling me all the things I had to do. It. Never. Stopped. For. One. Minute. Then came MS.

In the beginning, I ignored my symptoms. I DEFIED them. I kept working, cleaning, shopping, doing, doing, doing.  And I paid the price with regular relapses, needing a course of IV steroids to get me functioning again. I had more and more residual deficits each time. It took forever, but I finally allowed myself to respect the fact that I needed to listen for cues and anticipate my needs before they got to a crisis point.   

Best Thing # 3: My “overbed” table

Go ahead, laugh.  It is, after my laptop, my most treasured possession in the world. After my diagnosis with MS, I was juggling my entire life on my bed and nightstand. Juggling unsuccessfully, I might add. So a friend suggested getting “one of those tables like they have in the hospital.” I am a nurse and I have seen unspeakably disgusting things on bedside tables. I can cope with these things professionally. But I certainly didn’t want those memories lingering near my own bed.

So I resisted. And I spilled things and lost things and sat on things because my bed was a disorganized mess. In desperation, I priced what are called “overbed” tables. I was delighted to find they had a different name: laptop tables!! Well, these didn’t conjure up memories of basins or bedpans for me.  What’s more, they were reasonably priced. So I bought one. And I love, love, love it.

It has a tilt top side for my laptop, a solid side for books, cups, plates, etc., and wheels that allow it to be pushed out of the way. The wheels are probably the weakest link as they will not roll over anything thicker than a human hair, but that is just a quibble. I stitched up a big tote bag with half a dozen pockets that hangs over the side of the table to hold my knitting, my iPod, my mobile phone, CDs, pens and notepads. It is like another limb.

Best Thing #4: Reach-y thingies

Whether because of the numbness and weakness in my hands or because I am simply clumsy, I do not know. I just know I drop and/or knock over everything. And, because of being so spastic and weak, I have the darndest time picking up the things I have pitched to the floor.

It took years before it occurred to me, but with a lightning strike of brilliance (yes, that is sarcasm), I finally bought several reach-y thingies. I do believe that is the technical name for them. [Note: the technical name is reachers.]

I bought ones that fold in half for the kitchen and bedroom, and that have wide, rubberized tips so I can pick up a variety of things. For the den, where I sew, (this was extra brilliant) I bought one with a magnetized tip because I am sick of playing 500 pick-up with the cups of pins I am perpetually spilling.  Voila! Now all I have to do when I need a pin is stick my magnetized reacher on the floor and I come up with a dozen. I usually come up with a dozen other things as well, but we won’t talk about that.

Best Thing #5: Admitting I have MS

Crazy, huh?  That having MS would be on any sort of “Best Things” list?  Having MS certainly isn’t the best of anything. 

I resisted the MS label for a long, long time. Denial is a great protective mechanism for a while. It is a good place to hide while the shock registers in your brain. But, when you’re in it, it is really hard to discern when denial goes from protective to destructive. For me, it was damaging when I wasn’t taking care of myself or accepting help because I refused to accept that I was sick. MS has no tolerance for not taking care of yourself. It is a punishing disease that punishes you even more if you disregard it. By admitting I have it, I am free to take better care of myself. 

That is the uniting theme here in my Five Best Things – do what is best for you. What is best to make your life simpler, happier, healthier. I am not a fan of the saying, “If life gives you lemons, make lemonade.” Life is hard enough at the best of times. My opinion is, if life gives you lemons then you have too many dang lemons. And I don’t even like lemonade. But we are stuck with this disease and taking good care of ourselves is the best way to cope. I suppose that could be considered a form of making lemonade out of lemons. Although if I have to make something, then what I’d really like is lemon vodka. :)

19 comments:

  1. MS wont stop me, have had R/R Ms for 4 years and im only 21, exercise and diet is the key! taking Gilenya

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  2. Like your attitude - I myself only have one reach-y thing (which I can never find when I need it). Now about the lemon vodka...martinis anyone!

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    1. Splurge and get yourself a few more! You will be SO happy you did.

      And I have my shaker at the ready! Give me a shout if you are ever heading to the Jersey Shore! Martinis all around. :)

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  3. Oh, forgot to say I have R/R MS was diagnosed 23 years ago!

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  4. The first rule I set for myself is never be paralyzed by 'possibilities' live with today. After 20yrs of r/r MS, I have had some rough times but have never been paralyzed by MS. This is true for many so don't set expectations for a future that includes problems you may never have.

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    1. I am afraid it is creeping up to that time of not walking ,I am push as hard as I can but I get spasms that go through my legs and up my back it feels like something is squeezing me and I can't get any air. I went face down twice now out in our yard, what is that squeezing? Does anyone else have it. that bed side table sounds nice. A bed sounds even better. I have been sleeping in a recliner for 5 years. My husband of 30 year doesn't do well with the fact I cant cook and clean like I use to, so he gave me a room with a TV and chair and my lab top. He work about 13-14 hours /day and I can't make it down the steps most the time so I end up waiting all day for food, Although the last 2 days I have had cream of wheat. I know he is tired and don;t want to come home to more sickness. I'm just lonely, I write a lot too. I wish I could get someone to get me back on my feet, AGAIN has anyone heard or had that feeling like you are being squeezed?

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    2. this is so touching and I really want to cry...MS is so dreadful and they know it's really hard on the caretakers too. I finally got to the point where I reached out and got a home healthcare aide. And she is a wonderful. The first part about doing that is to call the him of aging and disability in your state and get the ball rolling. It will give you such a feeling of relief, more independence, feeling so much better about yourself. I've been where you are and it really sucks. To have to wait a whole day to get some food is just not acceptable

      I wrote a book about my ex-princes with MS. It is Called Potty Mouth. it's inspirational and funny at I hope so much that it will help you. There are many ideas in it on how to go about getting the care they deserve. I too, spent a lot of time in bed.

      I also write a blog and one of the site it was 10 Things That Will Make It Easier for People with Disabilities.

      Imagehttp://www.thepottymouthbook.com

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    3. Peg, that is a very good point. I think for most people, the 'worst' will not happen. I just think it is a good idea to be open to and prepared for all possibilities, since MS is so unpredictable.

      I am very glad your course has been manageable. :)

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  5. Thanks for this..I am a doer and been diagnosed with MS this year.. I thought for the last 3 years, I have begun to go crazy and pushed harder and harder to do things to no avail...I finally ended up with ON. and was forced to slow down...I now listen to my body, but sometimes not soon enough.. I continually have to remind my family that enough is enough and I can't do what I used to..It is easy for them to push me farther than I can go because I always did it, but now I need to remember that they don't know how I feel and need me to tell them I am done...I need a rest or that they are being to hard on me...

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    1. Pardon my ignorance, but what is "ON"?

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    2. TJ, ON is Optic Neuritis, an inflammation of the optic nerve, which is what transmits the signals from our eyes to our brains. The inflammation affects our vision, the extent depending on the level of inflammation. It is a classic and common symptom of MS, although some people with MS never experience it at all. The National MS Society website has excellent information available about ON, http://tinyurl.com/83a6jtj.

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  6. I was in a study for an oral med for MS for 3years, I have all the symptoms, had ON and I have never been offically "diagnosed". That means I don't have it, right?

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  7. I'm so glad someone else Sid lemon drops. ILove them! One is enough to be special. Also enjoy making them. This blog came at the right time. It's been a hard day thanks!

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  8. Love your positive outlook and sarcasm. I was diagnosed in 2007 when I was 21 and have been living with RRMS ever since. I've recently started blogging as well. I've noticed most people tend to focus on how difficult things have become for them rather than talking about how they refuse to let MS get in their way.

    If you've got some time, give my blog a read :-)
    Nick With MS - Blogspot

    NickWithMS

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    1. I'm way ahead of you. Checked out your blog AND left a witty and amusing comment to boot several weeks ago. :) Nice job. But sorry you have to be a member of this club. :(

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  10. THis is my third and last try at commenting. Here goes >>>>>

    Great blog!

    The first great thing after dx was to take early retirement on disability after 16 years of teaching and studying. Within weeks former pupils and students told me how much better I looked and calmer I seemed.

    After that everything started moving up:finally dealing with my health issues; publishing my first book of poetry and individual poems in anthologies; entering my photography in local exhibitions; swimming daily. I was finally living on my own schedule dictated by how much energy I had and how I felt! What an amazing difference!!!

    Feel good and keep blogging!

    Peace & Serenity,
    Maris

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    1. Maris, you are who I want to be when I grow up. :) I am so glad you were ahead of the game and didn't make all the stubborn, denial based missteps that I did.

      Peace and serenity are the perfect goals, aren't they? I wish the same for you.

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  11. Thanks so much everyone for your positive comments and for sharing your experiences. I am so grateful to you for reading!!

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