It's been a rough week so far. I've been really dizzy with little relief. I want to try and explain what I mean when I say I'm "dizzy" so here goes...
Dizzy is the term I use when I'm just "off" - it could mean that I feel like my brain is doing somersaults, or that feeling you get when you have a ponytail in too tight or if you've been wearing a hat too long. Have you ever had butterflies in your stomach? Most people have, so when someone uses that term you can relate. If you had to just describe that feeling to someone and they hadn't felt it before it would be difficult for you to describe and for them to comprehend. Well, I feel like I have "butterflies on my brain" sometimes. When I'm having a really bad night (like I did Tuesday) I wake up often during the night and the spinning doesn't stop. Have you ever had a dream where you're falling? You feel like everything in your mind is out of control, but you wake up and it stops. Well, when I wake up it doesn't stop and the nightmare that this is my waking reality sets in. I have a very recurrent dream that I'm driving up a steep, narrow bridge with no guard rails on either side and the road feels like it's covered in oil b/c I'm sliding all over the place. My brain is just scrambled b/c of the motion I'm sensing plus the fear that any minute I will be free-falling over the edge.
And just so you know I am dizzy to some degree every single day and have been for almost nine months. I am tired a lot b/c my brain is doing double-time trying to work properly and just think plus having to deal with this misinformation that my vestibular nerve (balance) in my ear is sending it. Basically that nerve is what keeps us all standing upright and what alerts our bodies when we lie down or move position so that our brain can adjust. That nerve in my left ear is constantly sending misfires to my brain. So anything I'm doing takes twice the brain power to accomplish. If I seems spacey lately (more spacey that normal I guess) it's legit!
Just thought I would try and share how I feel physically with this condition.
Even though I am feeling this bad physically, I am learning from my dear friend with MS that you just have to be thankful for the things you can do and not focus on what you can't do (love you Jimmie!). Let me tell you about what I could do yesterday even though I felt awful... I played Candyland with my kids, I painted pictures with Lydia, I did Mosaic Art with them, I watched Beau play a Disneyjunior.com game and get 1st place and I got lots and lots of hugs and kisses from them yesterday. I'd say that's a pretty good day!
And I'm going to take a minute to brag on my kids. I am so very, very, very blessed. I can't imagine having this condition and having bad kids to worry about. I laid down for hours yesterday and they entertained themselves without one bit of strife. I wasn't actually sleeping so I was aware of their general status but it was peaceful the entire time I was in the bed. I left them watching a movie, but came out of the bedroom to find the TV off and them diligently working with items they keep in their craft bins. They were making blankets for their stuffed animals by cutting up equal lengths of yarn and taping them together.
|"Blankets" made from yarn|
"The righteous man leads a blameless life; blessed are his children after him." ---Proverbs 20:7
Still praying for a miracle - divine and complete healing. I know it will come, I know it will. There is no question in my mind. I just don't know when. It may be days, it could be years. But I know it will come. And I will be sure that people know of God's goodness.
"I will not die but live* and will proclaim what the Lord has done." ---Psalm 118:17
* This living will be the abundant living that Jesus promises in John 10:10
Final note - after a promising start, we have not heard back from the doctor at Mayo. Waiting...