Wednesday, December 4, 2013

Are you trying to fool people about your MS?


When I was a child I remember hide-and-go-seek as game you could play with just about anyone.  Some kids picked ridiculously good hiding spots and others ridiculously easy ones. When I played I always wanted my hiding spot to be good but not too good.  I wanted the thrill of the possibility of being found.  I could have went into the attic and NOBODY would have found me but that wasn't fun to me.  As am adult hide-and-go-seek is not something I want to participate in.  However, most MS'er's have or current do with their MS.  Don't kid yourself you know you have.  For example you have been planning on going to event with your spouse or family but you don't feel good...at all but you tell them you feel better than you actually do.

Jenn has tried this with me.  Most of the time I would catch it and call her on it.  I get it, you don't want to look like a whiner, weak or feel like you're being a burden by saying how you really feel.  I have 3 words for you.  Get over it.  Sounds harsh but it has to be.  Yes, you have good intentions by playing the MS hide-and-go-seek game but it will come back to bite you.  The fact is you are going to miss things or have them interrupted or shortened because of your MS.  It sucks but it is something that is a part of managing your MS both physically and mentally.

When I ask Jenn how she is feeling I do it for a couple of reasons.  First, I care how she is feeling and if there is something going on that I can help with then I can do something.  Second is that I notice that she is "off" and I want know what it is so I can help (if I can).  When I noticed she was "off" and I asked her how she was feeling and she would be reply "I'm doing okay".  I would respond with "really.....because I can see that everything is not "okay".  Now can you please tell me what is going on?".  At this point she would spill the beans on what was going on.

I don't ask how she's doing to be a pest or make MS and her health the focal point of everything.  I genuinely want to know.  I also mentally mark down any patterns or new things as they happened.  It helps me as a care partner to recognize health patterns and when new or different things come up.

Something you may not have thought about when you telling people you feel better than you do.  It creates a pattern of deception that will have your care partner (and others) questioning what you are saying about your health.  This is not good for anyone and can be a very slippery slope.  It can get to a point that everything (not just health) you are saying is questioned is questioned if it is truthful.

The people around you want the best for you and even if it means altering a plan be upfront about how you are feeling.  If you feel that someone doesn't understand why then use that opportunity to give them a quick education on why.  Having to be upfront and truthful about how you are feeling is not easy.  The last thing you want is to have your MS get in the way of anything.  Unfortunately it's going to but trust me as a care partner we are prepared to make adjustments and go with the flow.

Next post: Holidays + Stress = MS nightmare!

Thanks for reading.

-Brent

Reject Defeat




1 comment:

  1. This is so true. "I'm fine".... Marcus does this to me when I can see it plain as day that he isn't. He always wonders how I always "know" when he is feeling off. I think he thinks he would disappoint me if we had to cancel/change plans because of his MS. Thing is, I would drop everything- every single plan- just so he could feel better. No big deal to me, but to him... He would rather suffer through it (pain, fatigue, off balance, etc) ... I think it's a fairly common MS trait, to try to hide the MS & act like nothing is wrong.

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