I'm in a good mood despite that my meds seem to have my eyes in a bit of a fog today. Guess that's what happens when you take 3 medications that have a side effect of blurred Vision.
My insomnia lately has been pretty bad, I'm not sure if it's because I am getting pretty low on my low days now or what. I just lay in bed after everyone is sleeping and think of a million and one things that I probably shouldn't be thinking about.
Sometimes it's therapeutic to just clear your mind and write it all down but that leaves me feeling too vulnerable putting it all out on the table like that.
Last night I couldn't help but thinking that I would never drive again. If I can't see my feet I don't really know what I'm doing since I have so much sensory loss in them. And well driving a car requires the moving of your feet without looking at them. While this may seem like I'm giving up to some of you, I'm just trying to be realistic. And just the thought of driving right now gives me anxiety. My hope is that In few months my legs will be more stable and I will be able to open the door and leave the house on my own. That would mean I could take a taxi if I needed to or get a ride from a friend!
Right now I need to figure out the whole opening the door situation before I can even think to do that. I am being hopeful though. Each week I feel like I'm getting stronger and I know that all the positivity in my life has been really helping me through this process.
I also think about things I miss.
Mostly the "old me" and what I was able to do vs "new me" and my limitations. I've really been trying to make an effort and push myself to do things I am not comfortable with in order to make myself a better person! (Currently right now using the big person oven lol)
I wake up and think about how it's a beautiful day and how id love to get sushi and maybe a frozen yogurt with andrew and chill on the benches in Santana row and just enjoy each other's company!
But then I am reminded of the stress of getting me out of the house into the dining room/bathroom etc and I am put off by the idea.
I need to stop doing that and just go with it. I just feel like it's such a burden to deal with all my stuff and helping me in and out of the car. No one has ever said that to me but my brain tends to think that. I mean in comparison to the summer it takes whoever helping me a bit less effort.
I wish I could find a manual wheelchair that would fit in the mustang trunk though. The transfer chair works ok but I don't feel as Independent and I tend to get frustrated. Id much rather wheel myself around and give my friends/love ones a break! Plus it makes going to the restroom a bit easier. So I'm on the search for that amazing chair that will fit!
Each day I try and think of something new I can do that I couldn't do before and that makes me feel infinitely better about what's going on.
For instance today I managed to use the big oven. I was able to move the potatoes around after 30 minutes and get the ham in without burning myself which that in itself is a victory!
Now I'm hoping Andrew will be home to help me take stuff out of the oven because I don't quite feel comfortable with that just yet!
Here's my on going mental list of things I can now do that in June I could not!
1. Get out of bed myself
2. Use the bathroom myself
3. Chop vegetables
4. Cook on the stove top
5. Do the stairs on my own
6. Walk laps between rooms
7. Write in a some what legible manner
8. Open a can with a pull tab (although those damn ravioli still spray every where)
9. Open a can of soda or mineral water
10. Open a water bottle, even the ones with the annoying small caps
11. Do the dishes (not the actual dishwasher)
12. Paint my nails
That's all I can think of at the moment but I think that's pretty good.
Each day I feel like there are small improvement and I just hope to get to a place where I can lead a more normal life. My PT says the treadmill is preparing me for the marathon.
The marathon being able to get around without a wheelchair. I just hope that day is sooner rather than later.
From what I've read from people who also suffer through Cidp the first couple years are the hardest. I feel like I was robbed of 2013. I spent the first half of the year trying to find out what was wrong with me and then the second half basically bed ridden. I don't want this year to be like that! I want to get out there and enjoy stuff and I'm really hoping that will happen!
I want to get away with Andrew and kick back and really enjoy stuff !
Id love to head up to napa or Vegas or even something really cheap as long as we are together.
I hate worrying about money but it's constantly on my mind. As most of you do, I have bills that need to be paid and as you know I haven't been working.
I honestly don't know if I could handle the stress of my job currently or that I could even get there since I don't drive.
Id love to get an answer from SS office but it still just keeps showing the same standard response when I check that the medical portion of my claim is being looked into. I just keep telling myself I have until June for my EDD but it still stresses me out!
I would love them to give me my 1099 form so I could figure out my taxes. I just don't want to owe money! I don't know how disability works it's all new to me! So many new experiences happening. Most of which I wish I didn't have to deal with!
Dinner tonight was ham and cheesy potatoes! I made it all just needed help getting it out of the oven.
Worked on my standing as I already posted on my page. I wasn't able to do the 15 minutes in full but broken up I accomplished it. There's always tomorrow to try and accomplish the full 15 mins in a row.
And now time to relax with Andrew and watch some television before venturing back up the stairs.
Xo
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