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Thread: Where has sunshine gone?

  1. #1
    Distinguished Community Member Sunshine's Avatar
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    Oct 2006

    Default Where has sunshine gone?

    For regular readers, I am sure there has been notice that Sunshine has not been present on this bulletin board for weeks.

    First was the move into an awesome accessible home: Low counters, wide doorways for wheelchair (aka R2D2) , roll in showers, heated pool for exercise, ramps, no stairs anywhere.

    The attendant difficulties with moving: Can’t findanything, absence of internet and cell phones for a couple of weeks.

    And then there was a flare up of SPS symptoms which seem to have been caused by over exertion of taping boxes, putting things into boxes, very little activity for an able bodied person, but deadly for one with SPS and MS>

    I became full time wheelchair, R2D2 bound. Then, my bladder began to really act up with spasms, urgency, inability to urinate etc but no pain. Suspicious of UTI, went to test and bingo. The day after starting Keflex, walking started to improve.

    Now I am about 50% R2D2 bound, and can walk comfortable about 30 steps. More than 60 at a time is not yet possible.

    Today, I am hoping to get into my heated pool. Let’s see when the sun rises if the pool is warm enough, because I turned on the heater last night after Husband bought a cover and cut it to size yesterday.

    Cooking has become an all day affair: between plotting the shopping days in advance, and then trying to cook with R2D2 and limited walking.

    I am able to pivot again.

    Still hoping to surf again, which might or might not be possible. Hate to impose upon my buddies to do so much for me in a regular fashion. Plus, its scary to be so far away from emergency treatment. Surfers are super independent people: While we look out for each other, its hard to hear if someone is in trouble due to the roaring of the ocean.

    Even sitting on R2 on the beach is scary, not knowing if sudddnly a crippling spasm will occur. And, the fear of losing touch with my Baclofen and going into withdrawal if the ER doesn’t give it in a timely fashion.

    So many things to get under control before trying to get into the ocean again. Plus, its winter: Waves are colder, and more powerful. Plus, wearing a wetsuit keeps one warm, but taking it off can trigger a spasm in legs, midriff and feet. Do I really want to impose on others for it?
    Last edited by Sunshine; 12-16-2018 at 02:47 AM.

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  3. #2
    Distinguished Community Member Sunshine's Avatar
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    Oct 2006


    Also, the increased Baclofen to 120mg daily, from 90 stopped middle of the night spasming, but created horrible side effects including jittery ness, more hand dropping, nystagmus, etc. Throttled back to 110 and that tamped down the SEs plus the Keflex for UTI helped out as well.

    Seeneuro this week and hoping to find a strategy to cut back to 100 and maybe even eventually to 90 to improve side effects while keeping spasms under control.

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  5. #3
    Distinguished Community Member
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    Oct 2006
    Red Sox Nation :D


    Thank you for this, Sunshine. I hope you are able to get in your new pool today.

    There comes a time when silence is betrayal.- MLK

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  7. #4
    Distinguished Community Member Sunshine's Avatar
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    Oct 2006


    Trying very hard to not panic at every little problem as though its a 3 alarm fire. The SPS makes it hard to tamp down on emotions, feeling perpetually vulnerable and physically unable to take care of small issues before they become large ones.

    I am sure others with SPS and ms can relate to this.

    I had wondered why the people on the SPS FB page always seemed perpetually panicked and emotional. I suspect it comes with the disease. I had thought the page attracted out of control emotionally people, but now I think its a by product of SPS.

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