SoCS:stream of consciousness Saturday

I don’t know if what I have done this past week is uncommon or common.

I’ve had a muscle disease diagnosis for over 11 years now. I’ve worked my way up to driving a few miles at most and that has taken me over a year. I typically stay on the prairie and down the dirt roads behind our house. Once I drove my daughter 7 miles to a Doctor’s appointment because my husband was out of town and it was an emergency. It only took 10 minutes and one traffic light to get there.

This past week while on the prairie the car that I can drive broke down. It sputtered and puttered home. I had it towed to the mechanic. THEN the other car which I cannot drive had the AC broken. As the one car was being towed I thought I would just boycott alltogether the limitations on this muscle disease and drive the car I cannot drive. The reason I can’t drive it is that it causes extreme pain. It takes extra effort to push the brake and turn the steering wheel. This causes me to then have days of excruciating pain and sleeplessness. So in truth, I can drive it, I just choose not to put myself through that pain when I know the other car is MUCH less painful to drive and there is only about an hour of recovery time.

Both cars needed to be fixed. My husband had JUST taken both cars in a few weeks earlier for other issues.

I decided to do this on my own.

I got in the car and drove to the mechanic. 10.3 miles. 17 minutes. I made it there. Muscle disease out the window. I got into the shop to wait to get the AC fixed and did not have the forethought of not having my scooter when I got there, being around tons of men, cologne, chemical smells, PTSD…nothing. I panicked. I thought I was going to have a seizure. Too many men. Too much cologne. Inability to get up and move. Frozen. All things very common for PTSD. I felt very exposed. Fortunately, the mechanic knows I have PTSD. He came over, sat with me, explained what happened to the AC, walked me out to the car, made sure I was ok, and then even came and checked on me again as I was alcohol wiping off the car. I also didn’t realize I’d then have to drive home! After all of that. I made it home and made it to the shower and made it to my bed. My body had succeeded and then the pain set in. Despite multiple pain meds, relaxants, and pain patches the pain was unbearable. YET I still did it. I fixed the car by myself. I had no cheering squad waiting for me to celebrate my 20 mile victory but I celebrated in my mind.

Denial is just a funny thing and I have thought about it multiple times since that trip.

I could deny having a muscle disease. I could even accept the pain that would go along with the denial. There is no denying the physical pain I am feeling right now as I type this. Even my fingers and toes hurt. But I can still push through the pain and do this, type this, get up and put in laundry. The weakness that happens because of this muscle disease I cannot push through or deny. If I can’t move, then I can’t move. My right shoulder is atrophied and my left leg is atrophied. I know those weaknesses and limitations and I can work around them denial or not.

So, I don’t know how many others with physical illnesses find it a common thing to just do what I did and say screw it I’m doing this regardless of the consequences.

I liked the fact that I had the ability to deny the disease and push through it even though I could not deny the later pain.

What I could not deny is what was in my brain.

I wish I could pretend I did not have PTSD. I wish I could just deny it, push through it, and act like it isn’t there. I wish I could deal with the pain, deny anything that happened that has caused the pain and just DO IT. Do ANYTHING.

Some may think well I did. I sat in that mechanic office and I DID deal with the PTSD. I didn’t. There was no dealing with it. There was no pushing through it. It was just as excruciating as the pain in my body but I couldn’t push through it in a way that made me feel invincible and strong like I did with pushing through the muscle disease. PTSD made me feel small. It made me feel angry. It made me feel defeated, hopeless, powerless, and as if life were just meaningless.

Yesterday, my other car was fixed so I had my husband take me there to pick up the car and drive it home. After countless uber experiences with clothes that had to be thrown away due to cologne and smells I thought, why not do this again! This car I could drive with no pain, the mechanic office was closed. I just had to get there, wipe the car down of cologne smells, and make it home. Denying again my muscle disease.

So I did it.

I made it home.

The pain last night from all of this was a cumulative affect. I started to cry. I never cry. I hate to cry. But I did.

I can deny or try to deny all of this in my life as much as I want to. It’s probably pretty common for most people do try to deny the bad things. But in the end we have to face the truth of it all. Last night I faced the truth of the pain in the PTSD and in my muscles. How difficult it was to do such a seemingly simple thing to most people. It was not simple to me. And I know it never will be. Common or uncommon, denial is a normal stage to go through to cope. I wish I could live in it like most people around me do. Just deny everything and pretend. My mind and body won’t let me do that. The truth truly does hurt. It hurts my physical body and my mind. I wish I could turn it all off. Turn the switch. Turn off at least a few switches to lessen some of this. I can’t. So I’m resting and writing hoping to find some peace and calm for body and mind. If that doesn’t work I will have to get out my camera. I feel tears coming again though at the realization of my life. I wish there were a switch for that too.

This post written for Linda’s prompt using the letters “mon” which I used as the word common and uncommon

https://lindaghill.com/category/stream-of-consciousness-saturday/

17 thoughts on “SoCS:stream of consciousness Saturday

  1. Trying to deny yes, but also forgetting. I forget sometimes like you were talking about here. Sometimes you just do something, because it’s what a person does. Even under the PTSD and muscle disease you’re still a person who wants to get things done, has a need to live life, take care of problems that arise that in other circumstances would be no problem. Quite stressful as it is to have a car break down when a person has a mobile body and can walk or run if necessary. A whole other issue for someone who isn’t able to move quickly physically and get to safety. It’s a really vulnerable position to be in.

    I don’t know how to explain it and I don’t know why exactly it happens, but I forget sometimes too. I have pretty severe issues with my adrenals and so I should not really even walk very far. Some days I do okay, but other days I’ll take a walk and it will take me a week to recover. And before I go, when I’m getting ready to go, I’m feeling good, strong and so ready to kick some ass, but then the next day I feel like I was hit by a truck and I’m like wtf? And then I remember, oh, that’s right, sometimes walking does this to me.

    I’m not comparing really. It’s just an illustration of forgetting sometimes.

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    • This makes total sense. I’m glad you shared that. You are right I guess it is just doing what people do. Not even thinking twice just boom doing it. Adrenal issues are a bitch and can leave you so exhausted. Every little thing can be an exhaustion. Doesn’t it suck that a little walk can just ruin the next week though.

      Liked by 1 person

      • It sucks bad. I love nature and love to hike but when I do it now, afterward all I want to do is sleep.
        And when I’m awake I have brain fog. I’m still having problems from it. Today…I just woke up at 1 pm! I hate getting up so late. So I won’t be walking like that anymore for a long time.

        That’s what happened this time anyway. Last two times when I went with B though, I was fine and those walks were longer. I don’t know I don’t get it. But it’s frustrating because I can’t get much done.

        I might go out there and sit by the creek maybe and also I seem to be ok with stretching/yoga and some of the exercises I learned in physical therapy for the herniated disc I have. But no more walking for a while.

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      • Sitting by a creek is something I would do every day if I had one next to me!
        If walking takes that much of a toll I would rule it out. I wonder if you are more stressed if you are alone and so you are holding yourself tightly and wearing out your muscles.
        Brain fog is tell tale of lyme. It’s what is all over the lyme boards. I have it and I’ve nevver heard anyone use the term that didn’t have lyme. I didn’t even know others felt that feeling. It’s awful. I’m so sorry you have that!!! I guess dissociation would make me feel that way too though.
        I woke up at 11 today. Sometimes I sleep until noon. Today I kept thinking I smelled something burning. Nope. Nothing burning. Phantom smell. What explains that?!!! Who in the hell knows but it is disturbing!

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      • That could be. Yes! I felt more confident than I have in a while about going out alone but I could still feel the apprehension so yeah, that is definitely a probability.

        Great! (Sarcasm) That would be just what I need. I’ll look more into lyme and the symptoms. I have only read a little bit about it and do know that you don’t necessarily have to have that bulls eye mark to get it.
        I’m hoping the brain fog is tiredness, too much sleep at the wrong times…like 2am and 1pm. Ugh. Even when I was younger I’d sleep like that and feel the way I feel now. I thought it was part of the depression. Perhaps I’ve had lyme all this time.

        Smelling something burning WOULD be disturbing.

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      • I never had a bullseye rash when I got lyme initially. But they have caused my joints to be affected, head fog, and seizures, and tons of other fatigue like symptoms. Igenix is the only trust worthy place to get tested.
        Good point on the sleep making you feel that grog feeling though.
        I’m wondering now about lyme though…anyone who has had ticks has a possibility. I had all of the coinfections too and then recently as you know got rocky mountain spotted fever and DID have a rash bc that’s all i needed was another fucking tick infection. And it isnt even common in florida

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      • Yeah, I was surprised to see and read that you got Rocky Mountain spotted fever. I guess all that stuff is moving around now though.

        I googled symptoms of lyme and can see that of course those symptoms can be part of other things too. So I’d have to get tested to be sure.

        They use the word ‘cognitive’ so I would take that as brain fog as one example of that.

        I notice that I get this groggy feeling after I put myself/body/mind through something stressful. I remember feeling a little brain foggy when I was caring for my father and being abused by my family.

        I had it after the break up of the affair a year before my father got sick and I get it along with some other issues (like heart palps) after walking sometimes or riding my bike.

        The last time I took a bike ride, which involved up hill as well as some fun down hills, the heart palps were really bad afterward and I haven’t ridden it since.

        I used to walk a dog a couple times a week. He lived in the same town and for a while I didn’t have a car, so I would walk over there. Then I’d walk him and then I’d walk home. At first it was fine and I had no problem with it.

        Then after the break up is when I started noticing the fatigue after an afternoon of so much walking. Before that, I could walk without fatigue afterward and I also rode my bike over there too and was fine.

        So all that leads me to believe that it’s connected to the adrenal fatigue or whatever it would be called. I mean, I don’t want to deny it if it is lyme. I’m just making connections here. Because it was Thursday that I took that walk and 3 days later here I am still not recovered. But I’m also older, and even feel more traumatized in some ways so my adrenals have not had a chance to heal. Idk. Hoping it’s not lyme. lol.

        Would you mind telling me your experience(s) of brain fog?

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      • Just curious have you done the saliva cortisol test to test your adrenals.it would be no surprise if they were burnt up! Burned out! Just from everythign you’ve been through. I learned that this week at an appointment that the adrenals after going through fight or flight can really get burned out so then the startle reflex is more heightened and everythign in the body is more on alert and more reactive and exhausted. Prob is just adrenal fatigue.
        I feel like my head is full of water. Like I am underwater and things seem far away and I can’t think clearly and I feel like I have awakened in the middle of the night to pee and I am stumbling to the bathroom. That kind of head fog where I just can’t stay focused adn have even a bit of dizziness like I just got off an elevator. I have lots of contacts of people with lyme and usually there is joint pain and so many other symptoms than just head fog. My psychiatrist told me head fog could just be from PTSD and dissociation. So sorry if I alarmed you at all by even mentioning it

        Liked by 1 person

      • Hey…we lost power last night. We had some hard wind and rain and about 7/7:30 our power just went kaplooey. I shut down and did some reading by candle and flash light and then went to sleep. I woke up around 11:30p to turn out lights and woke B up to turn his laptop off. Plus he’d started laundry before we lost electric so he went and dealt with that too. I slept a lot though and didn’t get up for the day until 10am.

        No worries about suggesting lyme. It’s good to rule things out or find out if it’s what I’m dealing with. It’s not something I’ve done much research on and it’s not like it’s impossible. I used to play disc golf at a course that is mostly in the woods so it is certainly worth taking into consideration.

        I did that cortisol saliva test some years ago. So no doubt it’s worse now. I feel a little better today but still not 100%. I’m definitely going to have to be done with walking…at least by myself. I also had done some other exercises that day too before going out for the walk so all that together could’ve been a big problem with me. It’s where the mindfulness is going to have to come in for me. I need to remember that I can’t do the same shit I used to as long as my adrenals are so drained.

        I have no doubt they are burned up and out. Not only do I do things like that walk, (even though I felt fine before it) not giving myself a chance to get back on track, but stuff happening around me causes issues too.

        The move took a lot out of me and then the fleas, etc. And that was on top of still not having recovered before.

        It just keeps getting layered on before I have the chance to recover from the last thing. Because then speaker boy has also made things worse. I have become really hyper alert to sounds and noise because of that.

        The front of our building is on a busy road as it is. I certainly noticed the sounds before but I adjusted and could live with it even when it got really busy out there, but now, since SB came along, it seems louder and more likely to get that hyper arousal effect going in me.

        I also understand that the adrenals being worn out can have an impact on the heart. I have no doubt the palps I get are connected. And then you’ve got the parts of the brain, specifically the hypothalamus, which correlates to the startle response I believe.

        Thankfully I don’t have joint or muscle pain. But I do know what that brain fog is like. At this point, my money is that it’s connected to my adrenals. I had that walking through water feeling after that break up. It was the weirdest feeling I’ve ever had. I felt like I was moving in slow motion all the time and couldn’t do anything about it.

        Something else that effects me too is not eating the way I should. I spent a lot of time eating a lot of junk food and watching TV for like 5 years or something. Not the best decision, especially doing that in my late 40s. Now being in my early 50s it’s a bitch to lose the weight I gained. My hormones are wacked no doubt.

        I’m that weird person though that stresses about buying all the stuff I think I should be eating, get it home and then order a pizza.

        I’ll go hours without eating after getting up sometimes too because what I have to eat in the house isn’t something I want to eat, not exciting enough, I don’t want to cook it. And I don’t want to cook it because I have no energy. And I have no energy because I’m not eating. Ugh…you probably get the picture. Insanity is…

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      • LOL so my husband went out and bought all these groceries and they were all fruits and veggies and good stuff and we totally ordered a pizza!!!!! Just like you said. I don’t find that weird at all and if it is then well I’m weird too!!
        It is a circle I know. I force myself in the morning to eat granola cereal and that way I know I’ve done something to start my metabolism and tell my body ok it’s time to start working.. but then forget or don’t want to or are too tired to eat until later at night.
        I think you are right about your adrenals. Makes complete sense. I’m just so sorry you have so much that keeps taxing them. I wish you had a silent little cottage in the woods with no noise and just sleep and sleep

        Liked by 1 person

      • LOL. I laughed when I read this last night right before shutting down. I wanted to respond but I was too tired.

        Something quick in the morning is a good thing. Quick and easy. I like those overnight oatmeal jars. Put it together the night before and it’s ready the next day.

        I go through periods of time where I really want eggs but I haven’t felt that way in a while.

        It’s funny that you mention a cottage in the woods. I read a post the other day by Lucky Otter about some cabins close to where she lives in North Carolina…in Asheville. I asked her to send me a link to find out about rentals. It looks like a beautiful place but it’s a bit too much per night.

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