Symptom Log – Let’s Update a bit? I FEEL DISABLED.

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Well I have not updated in a while now have I? Still have not even told anybody about my hospital stay… It’s just too hard, it’s going to take me a few days to type it all up but I need to hurry up and just do it so that people will understand what I went through and why I am where I am now. It was just such a huge part of my life that I don’t want to skim through it, but it’s so hard to be able to write what I want to say in the detail that I want to say it in right now. I don’t know about you but I can tell that my vocabulary is all messed up right now, my cognitive skills are as impaired as they have ever been. I have gone through this one paragraph at least 10 times already just fixing all my mistakes… I hate this…

So I won’t get into my hospital stay just yet, that is going to be more of a blogging treat by which I mean, I will get to it when I get to it LOL… already been a couple of months so how will one more hurt? For now let’s just go over some of my current symptoms.

My hands feel like they are full of sand, stiff, slow. No fine motor skill, well hardly any, I can’t type with more than one finger from each hand, it’s so frustrating, keeping up with everybody is impossible, so many e-mails backed up because of this…

I can barely walk, my vestibular system is all jacked up, everything is spinning, been like this for over a month. Sometimes it makes me want to be sick! Mostly just can’t stand straight or walk without falling over. I am so tired of falling, I’m only 22 years old, I should not be falling. So in and out of the wheelchair and using a walker again… Using my cane is just too dangerous. I get no break from this dizziness, it is constant from the moment I wake up to the moment I go to bed. It is like trying to walk in the middle of an earthquake 24/7.

Random strikes of pain, pins and needles, numbness, and all sorts of weird sensory issues. My vision is at a constant loss, blurry, sometimes even doubled. This makes walking extra hard as well. Telling cold from hot is hard.

I’ve been sleeping so much, I can’t seem to get enough sleep, even on the steroids I was tired all the time! This also contributes to my many aches and pains because I am always laying down…

I think I have also been experiencing the hug again, not as bad as the first time I had it, but bad enough to be annoying. My chest and stomach are so tight, it’s somewhat painful but mostly just annoying now, maybe I’ve been through so much other pain that this no longer seems that bad or maybe it’s just not that bad, I’m not sure.

Bladder issues are still around, not sure if I’ve mentioned this before, but man is it annoying, I always have to go and when I have to go, I have to go.

Oh man, my cognitive skills are shot, so hard to think. Imagine trying to complete a difficult math question in the middle of a crazy crowd of kids who are all shouting at you and tugging at your shirt for attention. I wish it was that simple for me… I can’t think straight and my basic problem solving skills have gone out the window, it’s weird not being able to do something anymore that you know in your head you used to be able to do, I feel so dumb sometimes.

I need a check list or something, so many symptoms I am probably overlooking, they just feel normal now, but the above symptoms are the ones that are effecting me the most… “Living” is so difficult right now because I can’t do anything for myself and can barely get around. I actually feel disabled, sick, I hate it, no more independence…

The world is so loud, I have to go for now.

4 thoughts on “Symptom Log – Let’s Update a bit? I FEEL DISABLED.

  • May 17, 2012 at 6:16 pm
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    You are really going through so much and only 22 years old! The day will come when you will be so much better, it's just hard to wait and wonder when that day will be.

    I appreciate you taking the time to write your blog, it sounds so difficult for you to do, so thank you for doing that for yourself to express, and for all of us.

    I read your blog this morning to my husband. I could see in him, that by hearing your story helps him to understand my MS better and what it can mean to ourselves and others.

    I don't like to complain or speak of my "invisible symptoms" very often, to anyone, so I find it helps tremendously to read your story to others, so that a deeper understanding of this disease, can take place.

    I too can feel so dumb, when I have trouble planning even the simplest things, or trying to figure something out, that I could always do before. My thinking is often in a fog of blankness and I often can figure out a way to get around it and make it less noticeable to others. Quite hard to try to explain it to anyone, anyway.

    I see my neuro at the end of this month, for my yearly visit. I hope I find the right words to explain what I've been going through. (here is where I will use some of your descriptions because they are so good)

    I will look back on your previous blogs and jot down some of your symptoms and descriptions. Thank you for that!

    Let's hope you see some improvement, every day, even if just baby steps for now.

    Mary-Ellen

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  • May 17, 2012 at 9:44 pm
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    thank you, I'm just glad that my words can help even just one person in this world, that is my goal.

    sure it is hard for me to keep up with this blog but it is what keeps me going, it gives me a sense of purpose in this life, so even now as I deal with an excruciating pain in my stomach and chest, I have to write, I have to reply to everybody's comments, it keeps me going.

    Hopefully soon I will be able to do it I used to do for this blog and the people who follow it, it's been so rough lately, I can't feel my hands yet they are full of pain, everything is so tight and my chest and abdomen that I feel like throwing up, I hope I can find something to make this better soon because it is truly unbearable at times.

    well before I go I just wanted to say this, I always write everything down before I see my doctor, even if it's just a quick note on how I feel so that when the time comes I will know how to word it and not be sitting there forever searching through my vocabulary to try to explain to the doctor how I feel.

    Good luck and thank you for writing!

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  • May 19, 2012 at 12:11 pm
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    Weezer is right Matt. The sun will come up tomorrow. I can't believe how much of a bad time you're having my friend. Thank you for your continued support mate. Iv'e told you many times how much you've helped me, and I don't know what I would have done without your blog and MS is BS. Surely you will catch a break soon. Just remember whatever doesn't kill you, makes you stronger. You are a stong, inspiring young man. I just want to give you a big man hug my friend.

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  • May 20, 2012 at 1:56 pm
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    lol thanks Stephen, Ill take a rain check on that man hug haha! What ever doesn't kills us makes us stronger, I SURE HOPE SO except there are going to be a bunch of SUPERMEN AND SUPERWOMAN WALKING AROUND! WAIT, LET'S GO MARVEL, AVENGERS ASSEMBLE! LOL…

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