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September 25, 2010 / multiplesclerosis1209

And Worse Again Today

I felt more energetic today and actually accomplished some things outside of the house but then by evening I was grumpy and irritable again….right about the time Hubby gets home.  Yesterday we were informed that Hubby’s father was coming for a visit tomorrow and bringing his dogs along with him.  This is annoying on many levels.  One, I’ve been feeling like shit all week and the house is a mess.  We have NO time to clean before he gets here.  Second thing…..really?  Two days notice?  Third, Hubby works on Sunday this weekend and Saturday was our day to hang out and actually spend quality time together.  And FOURTH, we have a dog that is not good with people other than a select few so she has to be locked up all day when we have company or she has to go to my mum’s house (which we didn’t have time to arrange so the poor girl will be locked up).  When Hubby got home tonight I tried to explain to him why I was so irritated about all of this and it turned into what seemed like “taking it out on” Hubby.  We talked it out and then changed the subject.  As I was trying to talk about an idea I have for Christmas gifts, my brain got flustered and I started crying.  The simplest thing can make me lose my focus and then Hubby giggles because he thinks it’s funny and harmless and adorable (and I love him for this but in the moment it’s pretty irritating).  I snapped at him for laughing at my “disability”.  I didn’t mean it to sound as harsh as it did and I apologized.  I’ve been apologizing a lot this week.  I try to just cry and collect my thoughts before we talk so I don’t sound mean.  I never want him to have to walk on eggshells because of my mood swings.  He decided that I needed to get out of the house so we went out to dinner….and not just any dinner, but good, delicious, gourmet pizza dinner.  I love pizza.  Like a lot.  After I got a little food in me I lightened up a bit and we had a nice time.  It was almost like a date!  It dawned on me that I did need to get out of the house.  I’ve been couped up in this damn house with our dogs since the end of June when I quit working.  I needed a taste of real life and I love my husband for knowing this.

Real life also makes me realize how much of a worrier I am now.  I have always been laid back and go-with-the-flow and now I worry about just about everything.  I’m constantly asking for details of things that we plan to do.  I can’t just jump in the truck and go and not care where we are going, who we are seeing and what we are doing which leads to a lot of questions to those involved (like Hubby).  I need to know how much energy to save up for the day/events (and if I will need the next day to recover),  I need to know what we are doing and if there will be bathrooms handy so I don’t pee my pants in public (Hubby’s good at scoping out toilets for me) and I need to know who’s going to be there mostly because I want to know if they know about my MS and my limitations .  So much more goes into me leaving the house now.  I hate being the girl with special needs.  I hate having limitations.  I hate having to explain to people exactly what my limitations are.  I hate feeling like the party pooper when I get exhausted.  I hate being the reason that we don’t/can’t do social stuff.  And I HATE being patronized.  If I try to tell people about my needs/limitations, many people then go overboard trying to accommodate me.  I’ve never liked being doted on by people other than by a partner or my mother.  Some of my best friends get it and my Hubby gets it and I appreciate people trying to help me but I’m not a cripple yet so please don’t treat me like one.  Hubby would do things for me whether or not I had MS so he’s allowed to dote.  He treats me like a queen.  I don’t mind when people say things like, “We wanted to walk over to such-and-such…is that cool with you or should we drive?”  That is a gentle way of asking if I’m capable.  I need to stop getting so defensive when people ask if i need help.  Most people offer help.  It’s courteous.  It’s usually in their tone if they are referring to my limitations or just offering help like they would to a normal person.  Being around people other than my husband or my mother is exhausting because I have to try extra hard to concentrate and focus and walk normal and laugh at the appropriate times and follow the conversations.  If there is anything else going on around us I have to try extra extra hard to focus.  Stimulation overload shuts my brain off.  The stimulation can be something as simple as music playing in the background or people talking.  I really want to do things like go to baseball and football games but I get nervous just thinking about it.  The crowds, the walking, the noise, the walking to the bathrooms repeatedly, the stairs, the crowds knocking me down the stairs…….

I know I say this a lot, but I’m so tired of this roller coaster ride.  I need a freaking break and I’ve decided that I want a vacation.  Me and Hubby in a hotel room with no cell phones, no laptop, no dogs, no laundry or dishes for just  for a few days.  Maybe a walk on a beach then back to the room to cuddle and talk and order room service.  Maybe I could forget that I have MS for few hours…..ahhh……a girl can dream…………..


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