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Exercise Just Hurts


SassyBetsy

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Ever since I got my shiny red walker I have been bustling all over the place but I dearly pay for it the next day and especially at night. I don't do better when I am out exercising. They keep telling me that over time I am going to feel wonderful when I get out there and exercise but so far I enjoy my time out walking but then I am a sobbing suffering hot mess later. I like to go out too much to stay at home for long but it can take me days to recover from one day out if I walk too much too far too long. I now have to say nope I am not walking anywhere today so I can rest and recover. I am not in any PT right now because I changed PCP and now I have referrals and I have to start all over with every doc I was seeing before which I think is a fab opportunity at the University Hospital. The frustrating part is that I am going to be starting over with a general screening and then need to have a referral to a vestibular physical therapist again. I want to get in with the stroke specialists if I can. So in any case I don't slow down because I am going to class and when I took the shuttle bus and walked I was in agony the next day because it was just too much. So I need to get driven close to the door so I don't walk much at all. Just because I can walk doesn't seem to mean that I should when it means that I just hurt so badly and not just in my usually painful leg but in both legs. They remain clueless about my swollen legs and feet so perhaps soon they will find the answer. walking just seems to increase the swelling and pain despite their claims that exercising is going to cure this. In fact exercising is a nightmare. I love to walk and I love to be out in public singing Ariel's song "I wanna be where the people are...." so I am not going to be sitting around. no danger of that. But it hurts. And it hurts more than the pain killers can cope with. It means I wake up in horrible pain after a day out walking around. I am ok walking around the house. it seems to a bell curve for me and has to be just the right amount of walking. I am thinking that I want to start fighting now for scooter but I really need to get up and burn calories. Not to mention I like greeting the world standing up. I am so frustrated that everything causes so much physical pain and that I am do drugged up. Doc asked me if I felt fatigued. I stated that I felt drugged up so I couldn't identify fatigue if it had bells and whistles. It is so bad that I was in a class in this large room set up like an old globe theater and I was in the top row near entrance in handicapped seating and I dozed off and dropped my cell phone on the floor. I met the gaze of another student watching me be just another old person nodding off. I am so embarrassed by this nodding off thing but I can't just stay home and sleep my life away. So I got a new phone case again.

 

I was told by another woman close to my age in one of my classes that I don't look like I had a stroke and that I was lucky that I didn't have any thing wrong after the stroke. woah! I guess I was clueless about stroke too once. I told her that my right side was weird now because my hand and arm are numb but they work but I have burned my hand in water and on tea pots and that my leg had nerve pain which I explained as lightening in my leg that makes me want to amputate it and puts me on drugs to deal with it so I am high when she sees me I explained and we giggled here. Then I explained about the vestibular things which she didn't know the word so I said that it is double vision like being drunk and dizziness with nausea. I said the hardest was that sometimes I can't read because my eyes bounce and jump so tracking a sentence is hard and frustrating as I reread stuff or have to just quit and I always loved reading and I need to read for school now too and it has improved but it still goes on and on. Then I explained that I can't drive anymore or do things alone like shop, shower, use stairs, and things that could be a fall risk which is most everything in life. I said the drugs make me sleepy so I nod off before I know it like right in the middle of texting in a boring class. I am sure the woman was sorry she asked by now but I continued to tell her that I also had an almost synesthesia experience with emotions and sounds and colors and patterns. I can feel these things physically like a strong tightness in my chest and gut that can hurt when a sound is unpleasant and loud or a color is too vivid. I can't ride well as a passenger because motion is also experienced as a physical painful sensation. Then I smiled and said that brain damage is a fascinating thing to experience. She smiled back in a polite way that showed her relief I shut up finally and she said "wow i couldn't tell" as if. Oh one more thing I added, " I can't balance so I walk real slow with this" and I patted my walker.

I think most of the people around me think I just have some back problem or something that makes me walk with a walker or a chair or maybe some car accident that did it. When I tell them though I am listening to myself and thinking "OMG how do I even leave the house with all this?" But the amazing thing about it is that I just keep on like normal as if I am normal because in my mind I am still just me and I think I am going to pop up and skipdance down the hallways and stairs just like before. If I stop and think of it I may sob and sob forever never to be consoled for the things so gone forever. I don't know what the movie Gone girl is about but I do know that I feel just like that title. I am hidden in plain sight too I guess from the reaction of other people. They don't know when I am looking at them that the room is moving and that I am trying to make their face stay in focus and not bounce around. I take notes too but they don't know that my hand is cold and numb and just weird because I have on a pretty ring and I write with my favorite pen or type on a computer. I guess no one knows I am in pain at some level all day every day unless my pills are working for that window moment. I always think they can tell my speech is weird now but I guess I'm told that I speak a bit slower and more deliberate and so it isn't too slurred up unless I get too tired. I am amazed because in my mind I am so damaged and everyone can see it but perhaps other people are paying more attention to their own insecurities to really focus on mine. But on the other hand it is frustrating when even my own family fails to understand that my daily life experience is being in a carnival fun house where the floors rock and you have to hang on and you look up and see the multi mirrors with every reflection all distorted and hear sounds like whirrling and whistling carnival sounds too loud or too muffled. I get around good in my house now though. They don't expect me to fall apart out in the world of stores. Going outside is like suddenly floating in outer space feeling so I need to hold on to an arm or a walker so I don't float away. What? They think I am nutty. The depth perception all the layers of outside...I try and get them to look and see it. I keep screaming inside and outside that my brain is so far from normal now and even if I get this or that back a bit at a time I am going to be a bit more uniquely eccentric than I used to be. I am presenting a class project next week actually two days so I wonder if they will notice I am not good enough and maybe I am becoming a great actress as I fake it along or maybe soon I will fit inside the mold if I keep clicking those ruby red shoes. I am learning to live inside the tornado.

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Hi Betsy, your writing is wow! I get that, people looking at me like I am

telling lies! Yet my mine is a mess! To day in my keep fit class, I could

not keep up, and just stopped with a smile on my face. For me, i was in so

much pain, when I walked, I would not stop, I wanted and needed to be out

in the fresh air, hearing the birds sing, looking at the blue sky,smelling

the fresh cut grass. It was over a year, before my feet felt like mine.

Another year, before my pain got "live able" during this I have been in

hospital six times! my blood pressure, playing to its own tune. I be on

and taking three meds for blood pressure, eating green veg, walking every

day, drinking only water. I even got a tube pushed down my nose to clean my

stomach. Yet through it all, my faith has kept me and I am still here to

fight another day! We are gladiators!

 

Let us know how your presentation goes

 

Yvonne

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you are the inside out girl pam. again your writing has a quality that as Yvonne has said is truly remarkable.  you really don't have to be anything but enormously proud in making your presentation!

 

good luck!

 

david

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Every time you write something, I'm grateful that you found this site. I'm sorry about the reason you had to find it of course. You keep saying so many of the things I keep thinking, and I'm just thankful that you say them, as I'm way too introverted, shy and insecure to do the same. Rock on, Pam! :)

 

Ursula

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Gosh I am so overwhelmed and grateful that my ravings and rantings are what can I say it is like well received and maybe understood. I am glad because I am mostly feeling really out there like nutty most of the time and I wonder if anyone can understand this existence very well.  I do feel inside out. and I wear my clothes like that frequently so how is that for well put together.

Ursula I think that you are awesome and that you can go out there and go do whatever you want to.  I am making a huge mess of things when I go out and I say oh well that is just normal for me anyhow. I nod off and drop my cell phone during class lectures or I eat and make noise with the wrappers. I always seem to get attention. Once my orange rolled down the theater style seats, someone got it and turned around and they handed it back up to me aisle by aisle and the professor talked on and on but was looking.  I have to go from one class to another and I can't walk fast and I have to use the lady's too so I end up in there late but I refuse to get back in the chair just to save time.  So this room doesn't have room for a walker. A really small room packed with desks. So I get the one by the door and they will move anyone who sits in it.  I mean I really am a private person but this is nice treatment helpful but I always feel in the way.  So just go out there U and remember wwpd  really because you know for a fact I could make a much worse mess of it.

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I am making a huge mess of things when I go out and I say oh well that is just normal for me anyhow.

 

And that's why you're my hero, Pam! ;) Me, I'm more like this: I wear an AFO when I'm out in the world (never at home, trying to train that ankle) because of drop foot and spasticity, and I walk weirdly because of it - and sometimes I stumble. Whenever that happens you can be sure that someone looks at me funny, as if I were drunk, and that's enough to push me even more into my being a recluse. It's okay really, I've been like that all of my life, so I'm used to it. Only the latest development (being abandoned by the boyfriend) made it much, much worse, because of the total loneliness. Yikes, look at all that bla bla. lol I'll say it again: Rock on, Pam! :D

 

Ursula

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I wish I could wave a magic wand and give you back empowerment. Something attracted boyfriend to you in the first place so don't let him run off with it now.  Take back your empowerment and self-affirmations. Whatever boyfriend abandoned I don't think it is you, maybe responsibility and compassion but that is just my two cents. Anyway don't let one lousy rejection keep you down because you didn't survive a stroke just to sit around alone and depressed. So get out and have some fun! Who cares if you walk weird or stumble just don't fall but celebrate that you can walk because greeting the world on your own two feet is magnificent isn't it?  I don't believe that an attractive and intelligent woman like yourself is going to be invisible or forgotten for long. I think you have more to write in your diary and that when you get done hibernating and healing that you are going to make a statement out there in the world that only you can make and maybe it is just that when you can walk then you do it!  I believe who we are makes a difference and maybe just a small conversation at starbucks  do you have those we have plenty--but that small interaction can make someone's day and who knows maybe saves a life from depression and maybe not just that stranger's life but your own wow.  So just go out and get a coffee some place and enjoy it when spring comes. Boyfriend was probably wonderful but seasons change and the next one will have merits to be appreciated too. Don't let yourself be robbed of You.  I don't believe you are a recluse by the way or you wouldn't be lonely. I believe you are hurt and scared and ashamed and I can relate to all of those things. I may be totally off and if I am I apologize for being so nervy just my American side showing but I hope you go share yourself because you have much to offer,

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Thank you for taking the time, Pam. You are right with so many of the things you said of course. I'm hoping that once the weather gets better, I'll be out and about a bit more.

 

Oh, the recluse thing is true, really. Up until now I was just your basic and happy introvert, but I always knew there's someone coming home who I could talk to at the end of the day. That's gone now, and I guess that's where the feeling of loneliness stems from. Anyway, things will get better, they just have to. ;)

 

Ursula

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