It's been forever since I wrote but I need to post about disability 12-19-14

Hello friends and family -

  It's been a very long time since I wrote in this blog.  So many things in life changed for me so quickly that I was overwhelmed and so busy that I didn't see to keeping up the blog.  And at a family reunion this summer, which I intend to write about in the new year, relatives begged me to keep writing.  And I never finished writing about Ireland and there's so much to tell. 

  But today is not about that, because today I'm at the pinnacle of frustration, anger, maybe some depression.  I have been making so many plans for the holidays - gifts to buy, stores to go to, gifts to make, cookies to bake, fun things I want to do for people that are less expensive....PLANS.  

  I have had plans to get things out of storage, originally I had plans to decorate for Christmas, plans to do this and that and see these people and then winter hit.

  For the first really and truly true time, I feel helplessly disabled.  Of course I've had plenty of days of disability but I have been able to accomplish SO LITTLE out of the plans that I made for myself, the things that I wanted to do, because my MS medication (a new one but it has the same approach - MS is an autoimmune disease, so it's a pill whose sole purpose is to slow down the disease by shutting down my immune system) is working.  I say that "it's working" - and I mean, it has made me defenseless against pathogens.  Basically I get sick all the damned time.  I've been sick more days than well in the last month of hopes and plans.  Or really all winter.  

  But I have to say that it is ridiculous right now - I wanted to do so many things, like I said - I had so many plans for what I was going to do for the holidays for friends and family.  So I thought and think every day I can do this or that....but then I end up having no control over what my body says or does.  Which means that some days or nights I wake up sick and realize that it may be difficult or impossible to accomplish anything and it's completely out of control.  As of today I have lost 60 pounds since January 1, 2014.  Unfortunately, not of it was intentional - most of it was from being sick either as a side effect of the medication I took at the beginning of the year that made it difficult to eat because of nausea, or keep food down when I did eat.  That was the first 45 pounds.  Since then, I've lost 15 more pounds and part of it is just trying to maintain a lower weight because I needed to lose weight anyway, and so I just ate what I needed for my energy expended.  However, I would really love to tone up the muscles if I ever felt well enough.

  The other frustrating thing is that no matter what, this disease causes exhaustion of its own, and "exhaustion" is also a side effect of my medication.  I find myself needing naps, dozing when on road trips, having less energy, and then, ironically, I have a hard time falling asleep at night but when I do fall asleep the last thing in the world my body wants to do is wake up.  I'm just not anywhere near as well-rested as I dream of being. 

  So I am writing this blog entry, years after the last one, to apologize to friends and family for many things - I have forgotten birthday cards and gifts this year....I haven't been able to always participate in fun activities.  I haven't been able to organize everything I have wanted to.  

  And for Christmas, I wasn't able to get all the fun little gifts that I wanted to - I am not giving up, but there are things that I planned for everyone - and I'm not able to complete them.  There are things that I wanted to make and I couldn't.  I wanted to do so much for many.  I couldn't even get my Christmas cards together.  So please don't think that I love you all any less or that I don't love every card we get, or that Steve and I aren't thinking of you all - he's just working his tail off and I am just trying to get by.  But for the first time I really understand that I have a disability that is not in my control and as a control freak, that is so frustrating.  

  I am doing OK, but I wanted to make up for the year of missing people's birthdays and social events because of not being well by making up through a great Christmas.  But I am falling short again.  So please forgive me and know that I love you all and wanted to do so much for everyone.  And I wasn't able.  I'm mad about it - I don't want to say that I have a disability.  I don't want to be sick anymore.  I don't want to be so tired, so exhausted anymore.  But mostly I just wanted to be a better friend and family member.....

  So please, forgive me.  I love you all