Woke up at 7am and stayed up which is the first strange thing considering most the time I'm so tired I can barely keep my eyes open.
My hands feel very tingly in a different way and the optimistic side of me feel like maybe they are finally "waking up" from the numb feeling that has been going on for the last year.
I did some writing today just to get my hand muscles moving and it looked decent.
I also have been having tingly sensations in my toes which I have never had before. Almost like that feeling that comes over you when you get a chill. Not sure if it's good or bad but it's just different.
I noticed earlier while massaging my feet that the arches of my foot and the heels tend to have more feeling then the ball of my foot. I'm not sure why that is but I found it interesting.
My leg muscles as a whole are kinda twitchy today and even pretty tingly. My knee is feeling like it needs to crack but it won't and my left ankle has been having a really nice pop which it never did before.
Basically my whole day just feels off. Not in a bad way just a bizarre way.
SO...
Andrew has an upcoming trip to New York in May. I am honestly thinking of staying home by myself. I had wanted my bestie to come out but the timing and such isn't going to work out.
I mean as long as I have the groceries delivered before Andy leaves I should be ok. My room will be stocked with water and snacks and I can mosey on downstairs for dinners.
As long as I have him leave the top lock undone I can call on Keara or Cyndee if I need anything since they have a key.
Part of me is nervous that something will happen but I can't constantly be a worry wart right? Id just need someone to check my mail for me.
Although May is still a ways away and I could have vast improvements by then.
It would be nice if I was able to open the door so I could at least use the door dash service while home alone.
It would also help for friends to come by if I could actually answer the door. If I had a second manual wheelchair it would be easier but at this point I don't. If only the bottom two floors were combined into 1. Oh balance!
I started reading a book that was recommended by another CIDPer "the two kinds of decay", it's a memoir and the woman who wrote it also had a version of what I have. In it she says she never got herself a wheelchair because she never wanted to admit that she could possibly never walk again.
I don't feel like needing a little extra help is admitting defeat. I mean sure there are days when I want to push myself to the limit and do as much as I can ( even when those things are really things I know I can't do) but there are days that I am so exhausted that I need a little assistance of my chair.
On those days when someone has to push me around I feel like such a burden though. I try and keep those negative thoughts to myself though.
All my family and friends have been very supportive in helping me get around and been quite understanding of my condition. Everyone keeps saying when this journey is over I should take this blog and turn it into a book.
I'm not sure anyone would really buy it and let's face it you have all read it already lol!
I saw something on the news last night that kinda upset me, I don't usually watch the news but for some reason this week the tonight show is staring at 13 instead of 11:30.
It was about lawsuits that disabled people are filing. It was all for the dumbest shit! One store was sued because they bathroom placard was square instead of a triangle. Really? That's what the lawyers are spending their time focusing on? A damn sign?
I would love to have easier handles and be able to lock and unlock the bathroom door myself. Hell half the bathrooms in Michigan that claimed to be "handicap" didn't even have room for a chair.
Another lawsuit was that the handicap stahl door was hung a half inch too high.
It said there was over 7,000 lawsuits filed and only filed by approximately 30 individuals. I would love to know who these individuals are and how they have so much damn time on their hands.
I mean don't get me wrong I have plenty of time on my hands but no time for that bullshit.
I just spent the last hour finishing that book. While I'm glad there was a positive recovery I felt the book was a bit all over the place. Which made me then think I could possibly write a book about this horrific stuff that has been happening.
I find a lot of what happens frustrating.
I do not know how to act as a disabled person and therefore I feel like I try to hard to make myself and things seem normal. Then if I feel like a friend, family member or my boyfriend aren't putting in the same amount of effort I get upset.
Perhaps it's from the drugs but I just can't help it. None of us have ever dealt with this before so we don't exactly know what we are doing.
I keep trying to tell myself just one day at a time but as a person with little patience I want change now!
I guarantee the things I long for the most, most of you probably take for granted on a daily basis.
I feel like they are all things I took for granted as well until they were taken away from me.
* i would love to be able to get out of bed without putting on shoes. My poor dad the first month I was really sick he would come in my room whenever I text him and lace up my running shoes. Then help me to and from the bathroom and take them off. Thankfully I have slip on crocs now but still I wish it wasn't such a process
*To be able to stand and take a shower
*Blow dry my hair or brush my teeth in front of the big mirror
*Sleep without worrying my leg is guna kick out and swiftly kick an animal out of bed
*Have good enough balance to be able to pull my pants up and down and perhaps one day even wear real jeans again with a zipper and button
*Wear a flip flop or my toms anything besides crocs
*Walk up a stair instead of pushing my body up one by one.
That's just a few to say the least.
I don't mean for this post to sound negative at all, just a bit of venting.
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