some times you win, some times you lose

but, as carole king said, most times you choose between the two. and then there is the dire straits lyric, “sometimes you’re the windshield, sometimes you’re the bug.”

this past week here in maine we endured unusually high heat – came down to make coffee a few days ago at 5am, and found it was already 85 degrees. it has cooled off significantly, which is very nice (had to put on jeans last night!). i don’t know about you, but heat is my kryptonite, sucking out my will to live. i spent a day and a half in the bedroom, where the air conditioner lives, watching law and order reruns. finally, on sunday afternoon, i just had to get out of there, and went downstairs to sit very still in the living room (musta been at least in the hight 80s, if not into the 90s), and just endured.

now i wonder if it did some sort of permanent damage to my already damaged brain. yesterday, monday, when it was nice and cool, was when it really hit me, and i definitely WAS the bug. i could barely walk, my legs ached (which they usually save for night-time, just to make sure i don’t get enough sleep). i couldn’t even think straight.  today, tuesday, my feet still feel like they each have a cement block and a brick tied on them – usually it’s just a cement block.

so i wonder why, now that it is very nicely cool, do these symptoms seem to be dogging me? i have grudgingly conceded a few things to MS, like using a wheelchair in the house. but i have not been able to get past being angry at it when i am forced to admit that MS has won, even if it’s only for a day. i would say it’s not fair, but what is? i am very thankful that our weekend guests were so understanding, and very glad that i was able to manage to have dinner on the deck with them (before going to bed VERY early.)

all i can do is shrug my shoulders, and hope the kryptonite loses it’s grip on me soon.

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2 responses

  1. Hi Stephen,My name is Susan,I am 52 years old.I’ve been living with MS for around 25 years.I have a friend named Dotty who lives in Maine,she turned me on to your site.I wonder if you get all the current news on MS.I have been taking a new drug to help me walk.It does help some.Of coures I’d like to walk like I used too.
    That I’m afraid will never happen.The drug name is Ampyra.Ever heard of it?Fell free to e-mail if you like Take care and God Bless.
    Susan Mcgrath

    1. thank you the suggestion. i have been using ampyra for some time. while i only notice it’s effectiveness when i forget to take it, and suddenly cannot walk at all, i have such trouble walking as it is that i wonder if i should even bother taking it any more. i spend most of my time in a wheelchair, so maybe i can take that pill out of my lineup. again, thanks for the suggestion!

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