This Is Multiple Sclerosis On TV!

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Let’s just say I’m having a perfectly lovely day taking a stroll in my wheelchair. I am rolling down this amazing dirt road drinking in the fresh air and the feeling that comes from being at one with nature. Yesterday, the temperature was 107°,  this being a record high summer all across the United States.

However, today for some unknown reason which  has scientists and local weathermen  mind boggled; today it is 75° and absolutely gorgeous. And so, for me, a woman with multiple sclerosis which makes dealing with the heat atrocious, I am finally able to go outside and get some fresh air. I’ve been stuck in the house for two months other than the fact that I’ve gone to the Dr. for one thing or another.

It was an exhilarating time and I am proud of myself just for taking the initiative to get outside and enjoy the wonders of nature.

And then, God damn it! I woke up! It was a dream. One of those wonderful dreams, almost orgasmic where you just don’t want to wake up and face another day of the same old shit.

I turn on the television to see what the weather report is for today and here is what I saw.

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The forecast for someone with MS. trying to turn the Channels doesn’t work. DAMN DAMN DAMN! I’ve still got MS. no matter what I do, or try to do because my body’s not working very well anymore and I’m paralyzed on my left side and often times in pain.

I have learned over the years how to temper my emotions; my sadness, my fear, my depression. I see a psychotherapist twice a month. I meditate I read inspirational books and I spent a lot of time on the computer reaching out to other people in the same pickle that on so that I know I am not alone and that beast will not take me down.

I am actually doing  quite well under the circumstances and have actually been able to write a book which I have entitled Potty Mouth because it is about my life living with multiple sclerosis which is a god damn mother fucking disease. So I took some lemons and I made some lemonade! You can find the website for my book right here. And don’t forget that I am giving a percentage of book sales to the National MS Society so I can be part of the solution to the problem . We need to stamp out this horrible monster which affects over 2.5 million people around the world and 400,000 people in the United States. Thanks guys, much love.

http://www.thepottymouthbook.com

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7 Responses to This Is Multiple Sclerosis On TV!

  1. A Dog With Fleas says:

    I totally understand your frustration and anger with the heat. It has been so atrocious this summer…..cannot wait until fall!! But I just love your outlook on everything, but I know it is hard and can be depressing at times. I hope your pschotherapy is helping. I know it has helped me tremendously on dealing with this disease.

    Be well my friend!!

    • renaeclare says:

      Hello my friend,
      Yes! My psychotherapy is going well and I always come out of it with a new perspective and giving myself a pat on the back which I often times find it hard to do. and as always, thank you so much for your kind and understanding words.
      Take good care of yourself….
      Renae

  2. Lovely post Renae.

    I can hardly use my right side so maybe we should join ourselves together and become one!

    Keep taking care and love you loads xx

    • renaeclare says:

      LOL! What a great idea, to join ourselves together. It’s going to take a lot of superglue and duct tape to get the job done but between the two of us I’m sure we can make it happen. So tell me, honestly, how the hell are you? How are you doing? How are you feeling?

      I’ve been thinking about you a lot and sending all good thoughts but the couple of real good Hugs in there. thank God I am right-handed and it is my left side that is kaput and for that I am thankful. How about you? Are you still walking pretty good?
      I’m sure you are still recuperating and it’s taking time. I can tell by your post that you got a lot on your mind. I’m always here for a good rant.
      Take care of yourself, be gentle and kind. Hugs from the right side,
      Renae

  3. Hi Renae,
    My waking is becoming really crap. can’t go anywhere without the rollator now and then can only manage about 5 minutes; so life is changing rapidly – too f****ing rapidly for my liking. this sodding condition has progressed so quickly in me since 2009 it’s so scary. Did I tell you the whole story about the fact that it has now become evident I have had this monster for 30 years with unexplained symptoms n the 80s and 90s then (lucky for me) a long gap without symptoms until 2005, but only diagnosed last year. It feels like a massive boulder has fallen on me from a great height. It’s now SP and progressing horribly. I HATE IT!!! By the way the doctors and neurologists back in the 80s and 90s said I was just stressed and anxious! – Bollocks!!

    So glad I found poetry though and am meeting some fabulous people including you who I would never have met otherwise. I am trying photography too! I believe we have to push doors and use the space they create if indeed those doors do actually manage to open. I am looking at getting a bite switch because when I take pictures of close up flowers, which is my favourite thing to capture, out of about 100 shots two may be floerrs, the rest are great shots of the sky or sideways trees!!!

    Although all this newly found stuff like poetry etc is wonderful some days its just not enough and I want my other life back; no point dwelling though cos it ain’t going to happen is it?!!

    I love that we have met and intend to stay very much in touch. You and your book are an inspiration to me and I think about you a great deal and where you are at and what you are going through on a minute by minute basis. I am truly thankful for our friendship

    Lots of hugs

    Christine

    xxx

    • renaeclare says:

      OMG! So you’ve had this monster grabbing at you for 30 years! And you’ve just been diagnosed last year… That is fucking crazy. I know the doctors in the 70s and 80s were really rather clueless but that happens say that you were stressed and anxious; but of course! What else are they going to say to you when they don’t know what the hell it is? I’m sorry, Christine, as your physicians we have to tell you that we are stumped and so in fact it must be something that you are doing wrong. Relax, don’t stress so much. And then come and see us into another year or two.

      and of course you were stressed, you have MS for the love of God and all that is holy and who doesn’t get anxious and worried about that? Especially when nobody even knows what the hell is wrong with you. I am so sorry that you had to go through all of that and that it’s getting worse for you.

      I remember when I first started to use the rollator and I was still working. It took a long time for me to get to that point. Before that I was just using a cane. It was humiliating to me and I hated showing everyone else that I was getting worse. and killing myself but I actually needed the god damned thing.If I knew then what I know now. well, I guess I wouldn’t do the same things over because I would know a lot better and there were a lot of lessons along the way that I needed to learn to get to this point. Being kind to myself is number one thing.
      I’m so glad that you found your creative side and you are writing poetry and photography. Very cool! and if you hadn’t started your poetry blog I never would have found you. How about that? What a world we live in eh?
      Lots of hugs and lots of love, your friend
      Renae

  4. Keep in touch!!!

    Just to rant on about the 80s again – I actually lost the complete use of my legs for 4 months at one time! How the fuck than that be just stress – I was given Ativan!!!!!!!!!!!!! AND at one time the pupil in my left eye dilated itself for no apparent reason, stayed that way for 2 months and the eye doctor was convinced I was on drugs!! Lol Can you imagine that?! I can still remember the look on his face when he didn’t believe me when I said of course I wasn’t on stupid drugs!

    And yes – one thing I do thank MS for is our friendship – long may it last!!

    Love and (((HUGS)))

    Christine xx

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