The heart wants

Today I was struck with a phrase I heard before but didn't really understand. And today I got it. 

"The heart wants what the heart wants"

I received a text from my brother today.

I only hear from him when he wants something. My Mom, although she lives in the same town as him sees him and speaks to him far less often than she does me. I'm angry that my brother is selfish and that the responsibility of my Mom almost always falls directly on my shoulders. 

I didn't reply to his text until later tonight as I was leery and already had a troubling conversation with my Moms nurse about her current state of health and the decline I am seeing. 

Once I finally did reply to my brother he asked about Mom, talked about how he wanted to visit with her. I found myself unloading my fears and concerns about our mothers health to him. In the midst of all his selfishness I find myself longing to have a relationship with him. I would love to know that I am not alone in my thoughts, feelings and decisions about our Mom. I would love to not feel so alone. 

I have my own set of issues each time I walk into my Mom's room. I try not to think about my own MS and how seeing her makes me fear for my own future and what I may end up leaving my family to deal with. But it's hard, those thoughts are easy to come and while I would never wish this disease on my brother, I would welcome his support.

So, the heart wants what the heart wants means that the heart is not always reasonable or logical.  It knows that sometimes while what you want isn't good for you or even realistic it doesn't stop you from wanting it. 

So tonight my heart is wishing I had a brother I was close with, that it could tell my fears to, that could help ease the burden of caring for mom. That's what the heart wants. 

Scratch that itch

After a night filled with little sleep I am struggling today.  It hs reminded me how important a good nights rest is for a peron with MS, or at least for me.
The reason I had such little sleep was due to my MS so things get tricky, making it a bit of a vicious cycle.
The sleeplessness was due to one of the harmless but crazy symptoms of my MS.  Itching and numbness plagued me into the wee hours. 
I knew better this time then to wake up my husband and have him check repeatedly for a rash.  It was my brain being tricked by the lesions from my disease.  It had me up scratching my neck and chest most of the night.  It does calm me slightly having been through this before, knowing I am not going crazy.....knowing that it will pass.  Those thoughts kept me calm as I laid awake and itched. 
What they did do was make me very tired this morning.  I notice I am slower in moving today, slower in thinking, my hands are colder than usual, coordination is worse, tremors are more noticable and my numbness increased because of my fatigue.

Because I was calm but wide awake I was able to do a lot of thinking.  Got a lot of productivity done in my head with To Do lists etc.  And I also thought a lot about my Mom.  We went to visit her on Saturday.  The visit was a really nice visit for the kids and me. Because of my optic neuritis and the busy return to school schedule etc, it was a month since the last visit.  I was saddened because I was able to quickly see how much more the MS has taken from her.  Her right hand is no longer able to move at all.  Her fingers now formed into a crippled and dysfunctional mass.  What did stick out in my memory from our visit is her comment, "I can print and eat with my left hand now." 
What's awesome is that in the midst of everything that this disease has taken from my Mom, she is able to tell me what she can still do.  Or even better, what she has learned to do inspite what the disease has taken.
So proud.