Ice #8

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I went today to Popham Beach out in Phippsburg, and while it was a beautiful day, and the waves were very dramatic, and I was very glad to be there, and I would have loved to stay there all morning, I quickly became very tired, and had to pee, and it was all I could do to get to the outhouse and then back to the car. All I wanted to do was lie in bed and sleep. I kept thinking how much I hate MS.

Driving home, I thought that perhaps the worst thing about multiple sclerosis for me is all of the negativity it leaves me with.  It is very hard to talk to people about how hard it is, when taking a walk on the beach becomes a big ordeal that I have to cut short and ruins me for the rest of the day. When people ask how I’m doing, even if they really do want to know, I don’t like to start in on how angry it makes me, or how hard it is not to get completely discouraged, or how it feels to enter into something as simple as walk on the beach knowing that it will end with complete exhaustion. I don’t know how to deal with all the negative emotion. I came home, lay down in bed, and slept for an hour. I could easily have slept all afternoon. I know that rest is very important, but I always feel like I’m wasting the weekend if I spend too much time in bed resting.

Have I mentioned lately how much I hate MS?


One thought on “Ice #8

  1. O.K. Steve…I have several questions…

    First, are you taking these pics with that digital camera you bought online that I saw at Cuddledown?

    Second, the picture that went with this post about Popham Beach – was that taken there??

    Popham is such a fantastic place – especially at this time year when ther eis virtually no one there. I can understand how frustrated it must make you to not be able to spend as much time out there as you wanted…walking on the beach does takes a lot out of a person, though. I have always thought that until you get out onto the really packed sand when the tide is out…beach walking is almost as energy intensive as snowshoeing.

    Anyway…my other question is basically…do you have someone you can talk to about how much you hate having MS and all that? I suspect the blog is not a bad place to let it out a little…but it is often nice to get feedback too. But I know that finding the right people to talk to can be difficult.

    Some people swear by support groups…I don’t know. Sometimes they are just endless bitching sessions…which can be helpful at times…and at others, not very therapeutic.

    Can you talk with your wife about it? That can be a double edged sword too – sometimes you don’t really want the spouse to know just how much some things are bothering you. On the other hand they can be a big support. And on the third hand…I have heard of many spouses that react negatively to this kind of stuff…

    I tried the whole “shrink” thing…anti-depressants haqve helped me (and I think I remember you being on them…), but I have yet to talk with any therapist that really had any insight into living with a chronic illness. They are all into behavior modification…”when you start thinking like that…stop!” Well, can we please explore a little bit why I might feel like this and why it might be VALID??!!!!

    Anyway…I don’t have any answers…but, hey…at least you have Squiggy on your team…all we have is Neal Bush – the Bush brother that went down in flames in the big Savings & Loan fiasco in the 80’s (although Barbara has done PSA’s for the ccfa).

    Hang in there, Steve.

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