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Monday, March 26, 2012

MS.. getting by with a little help from my friend

Today has proven to be more difficult than I had anticipated.  Last week I called Help At Home to let them know my MS was affecting me more than usual so they could, perhaps, increase the hours Dorraine is allowed to help me out each week.  I was told I would need to call DHS (Department of Human Services) of Illinois and they would have to approve my additional disability needs before any changes could be made.  Luckily, there was no need for a home evaluation and I have been allotted an extra 3 or 4 hours per week, totaling between 11 and 12 hours (Dorraine and I can't figure out the exact hours since Help At Home doesn't seem to know either).

I tried to go to bed a little bit earlier last night, knowing Dorraine would arrive at 11:45am this morning, which is the ass-crack of dawn for me!  Even with my phone alarm going off four different times before 11:30am, I was still fast asleep when Dorraine called, announcing she was already at my front door.  Oops, I guess I over-slept yet again.  I've been sleeping far too much almost every night day lately (technically, morning), which isn't a rarity when my MS is over active.  It doesn't even matter what time I go to bed either.  I tend to go to bed around 3 or 4am since I have no reason to be up in the morning, but I haven't been conscious until after 2pm many days as of late.  But even if I go to bed around 1 or 2am, I'm still having trouble waking and lugging myself out of my comfy bed by 1 in the afternoon.  The fatigue I feel is just horrible and if it weren't for my sweet kitties, I honestly wouldn't have a reason to get up.. ever.  But now that Emmi Sue needs both her insulin and medicine for her one of her ears in the morning AND Jinger needs her medication for hyperthyroidism (she has an over active thyroid), my girls need me to be up and alert so that I can give them their next round of medications twelve hours later, with Emmi Sue needing her ear medication in the other opposite ear at night.
When Dorraine was at my house today, she helped me in ways that brought me to tears.. and I'm crying now as I write this.  My girls are my life yet right my body hurts so much that I'm not able to do as much for them as I would like and she knows this.  Dorraine has been coming to my home for over a year and during this time, we have become very good friends.  She is priceless to me and I hope she realizes how much I appreciate all she does.  It is completely beyond her call of duty to do what she did but she volunteered to clean the litter boxes for me, even though now that Emmi Sue's blood sugar is still elevated, she tends to pee outside the boxes from time to time, which is why I have a few "doggy training pads" set out next to the boxes.  Dorraine didn't mind and went right into the kitty room and cleaned up after them, knowing I couldn't do it.  I was in tears and she said it was alright because she knew I did as much as I could when it was possible.

In a few hours I'll be off to get my next MRI's and then the waiting game begins.. will my MS be found to be advancing or will it be my old lesions attacking me?  I hope so much that it's just more of the same and I won't be expected to re-learn to adapt to a new life yet again.  I've become tired of readjusting my life and way of thinking to make room for what the MS does to me, even though I know this is what it means to have multiple sclerosis.  I'm exhausted of saying enough already!  I'm sick of making room for MS in my every day life.  I divorced two men because things weren't working out.  Relationships end when differences are irreconcilable.  But I can't break up with the MS no matter how desperately I need to get rid of it.  I'm stuck with it forever.  FOREVER.  I'm not sure how long forever will be but it sounds so daunting.. so depressingly long.
So I'm putting my happy face on because my parents will be coming to pick me up around 5pm to take me to my appointment and I don't want them to see me sad.  I need them to believe I'm handling things better than I really am so I can convince myself that I'm fine, rather than how I am truly feeling.  It's not that I choose to lie to Mom and Dad, but I prefer to smile and be pleasant than show my sadness and insecurity when I need them to be strong.

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