Chronic Pain / Comment Response / Deep Thoughts / Fibromyalgia / Long Post / Lor Rose / MPS / Myofascial Pain Syndrome / Physical Exercise / Sentimentality

Shedding Some Light

This is going to embarrass the hell out of a certain someone, but that’s just too bad. If anyone didn’t read it, here is the blog post I wrote last night about my take on dealing with a chronic condition. And below is the comment I received on it from a fellow writer.

I read this first thing this morning and I thought… “Well poor Murph. That sucks.” Got up stretched, put on some clothes and took my three legged border collie Basil on a half mile run.
I love it. Sunny out with just the right breeze to not be overly baking hot. Several people said hello to my like they always do as Basil and I pass.

I stopped to walk for a few house lengths to give Basil a little rest. As I was walking I thought of Murph’s post and I remembered that she mentioned she can’t run. I thought what if I couldn’t take Basil running? Walking isn’t sufficient for a dog of his energy level. What would I do? I wouldn’t know. It’s not fair to Basil to keep him cooped up in my house with my little backyard. I’d have to give him up.

Then I thought about Murph’s saying she has weak wrist and I thought “Well shit that would seriously fuck me up.” Why? Because I am very overly independent and when I set my mind to something I will do it. Murph mentions settling on something else for dinner because the things she needed for what she truly wanted she could’t open.

I may be a woman but hot damn I will open this jar by myself or so help me I will break it open. Not kidding I’ve done it before. So this would be a serious blow to my ego (which is proportional to a man’s).

Then I thought of my horses. Horses are not always the easiest creatures to handle. Even If you have the best horse in the whole wide world their equipment is heavy and you have to lift it high to tack up the horse. Heave and hoe to make it tight enough so you don’t slip off. Even if it’s not tight enough with the proper leg strength and balance you can stay on. But what if I didn’t have that? What would I do then? I honestly have no idea. Horses are like another part of soul just as much writing is. I honestly don’t know what I’d do without horses. I honestly can’t. I’ve been working with horses for fifteen years. How can I rewrite fifteen years of life? I can’t.

Continuing on my run Basil and I came home. I sat on the sofa with my mom while she shows me the dress she ordered online for her party on Wednesday. Basil looks at me like a fool of course me being his mom I know what he wants. Heaving myself with my left arm and left leg hooked over the arm of the sofa I twist over the back of the sofa to get Basil a treat.

I took pause. 

Would I be able to do that If I were Murph? 

Frowning I get Basil his treat. Facing the kitchen I want a water bottle Momma keeps on the top shelf. I being the short person that I am simply hop on the counter to get what I want. 

If I were Murph would I be able to do this? 

Jumping down I land lightly. 

Can Murph do these things? 

I found myself questioning everything that I do to include Murph.

I can’t say or tell her that everything will be ok because I don’t know. I can’t tell her the pain will go away because I know that’s not true. I can’t tell her it won’t get any worse because I don’t know that either. 

I wish I could tell her everything will be ok. The pain will go away. It won’t get any worse. Only better. 

But I can’t. 

I can tell her that she is loved.

Why?

It’s really a rather simple thing. Because Murph is Murph. 

Murph’s light brings people in. She makes them love her because of who she is on the inside not for what she can and cannot do.

Murph is just Murph and that’s all that matters. 

I know I love her. Even if we never meet in person (which I seriously doubt) I know we will remain friends. 

Murph is just Murph… 

and that’s all that matters.

Now, at the time of my writing the original post, I have to admit I felt like I was whining a bit. My issue, while it does affect my everyday life, is nowhere near as severe as Maggie’s, the movie character who inspired my post to begin with. So it kind of felt like I was complaining about something that not only can’t be changed, but could be a lot worse. I’m not as sensitive as Maggie is about her condition, which makes sense since hers was more severe. The fact that I don’t often complain about it made it feel even more like I was whining.

And then Lor posted her comment and, just as I’d made her think with my original post, she made me think with her comment. In fact, I had so much to blather about after reading that I couldn’t fit it all into a comment. I didn’t know there was a limit on comment length, but evidently there is, so there you go. I break Twitter (yes, you can go over the “allowed” number of tweets per day) and blog comment boxes.

So, with that in mind, here was my response, my answers to Lor asking “Could Murphy do this?” about the gestures she realized she makes without even considering it.

First off, I’m a little amazed, but glad to be able to have been so thought-provoking with a post that, at the time, kind of felt like I was just whining about the way things are. But you know what, we’re human, and no matter what, sometimes we just need to say plain and simple that the situation sucks.

Now, to sort of shed some light on the things you speculated on.

First off, no, I can’t run, not properly anyways. Sometimes on a good  day I can jog a little, but mostly, between chronic pain & asthma, it’s awkward & if I’m not careful my ankle will seize & give out & I come close to wiping out. I’ve found swimming or biking to be easier forms of exercise for me, but of course I can’t bring my dog with me for those… not to mention the fact that being a hound dog, she usually needs to stop & sniff something every two seconds.

And yes, the fact that my wrists often fail me is one of the biggest frustrations I deal with on a regular basis. When people are around, I crack jokes, saying things like “Someone open this for the cripple!” and making it humorous, because just like it says in my blog description, that’s how I deal with stuff.

Most people–close friends who’ve known me for years, Duncan, and even his roommates–accept it for what it is. The Guelph boys even argue about who gets to open things for me. 😛 But it is MADDENING to me, as independent as I am by nature, that I can’t do those things for myself. Maddening and shameful, even though it’s through no fault of my own that I have these issues. But that’s the way I feel just the same. I can’t write by hand as much as I’d like to, either, and that annoys me too. Lots of things do, especially if it’s been a rough day and I’m frustrated and something else sets me off.

We have horses back home, too. I haven’t been riding since my diagnosis, but I can imagine how it would go. We ride Western, so that requires quite a bit of pulling and tugging to get things settled right, and the fact that our boys don’t make it easy on you wouldn’t help. Last time I rode, I was able to tighten the cinch on my own, despite my asshole horse holding his breath. 😛 Now? I’d probably need several tries, or the muscles of my wrist would spasm and seize, and yeah, maybe I’d need help.

Even the numbness and tingling (one of the symptoms associated more with fibro, which started my worries) in my hands worries me where my dog is concerned. Though I have a harness that keeps her from pulling too strongly on her leash, she’s still a fifty-pound dog, and when she wants to pull, she pulls; and it’s not like I can just keep her inside until my hands are okay. She has to go out. And if I were to let her go, by accident, she would run, because she’s a hound, she follows her nose, and though I’m working on it, she’s not trained for off-leash when outside. If I were to accidentally lose control of her leash–I don’t know what I’d do.

Twisting over the back of a couch, climbing on and off counters–well, that depends. If it’s a good day, sure, I might do it and feel only a little twinge and barely even think about it. If it’s a bad day, I might be able to–but it would take three times longer. Or I could be unable to do it at all for fear of pain seizing my back and making me afraid to move at all. On bad days, I can feel the knots under my skin that mean it’s not going to be easy, that I’m going to be moving much, much slower than I’d like. But there’s nothing I can do about it, so I’ve learned–more or less–to deal with it.

Good day or bad, though, I am always aware of the friends I have and how amazing they are, of the people who will be by my side for the whole thing. Whether those friends are a part of my life in the “real world” or in the online writing community doesn’t matter. Friendship is friendship. I don’t need to be told everything will get better; I just need to be accepted, and that’s what every single person close to me gives me. It’s just that simple. And for that, I’ll always be thankful; because of that, I can deal with the bad days and keep looking forward to the good.

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6 thoughts on “Shedding Some Light

  1. Was the person you were "going to embarrass the hell out of a certain someone, but that's just too bad" supposed to be me? If it is you fail! I'm not embarrassed. I am slightly O.O eyed that you found my comment to your thought provoking post thought provoking! XDWas that confusing? No? Good… moving on…You're right. "Good day or bad, though, I am always aware of the friends I have and how amazing they are, of the people who will be by my side for the whole thing. Whether those friends are a part of my life in the "real world" or in the online writing community doesn't matter. Friendship is friendship. I don't need to be told everything will get better; I just need to be accepted, and that's what every single person close to me gives me. It's just that simple. And for that, I'll always be thankful; because of that, I can deal with the bad days and keep looking forward to the good."Couldn't say it any better myself.Well other than Murph is just Murph and that's all that matters

  2. Numbness and tingling are the mildest symptoms of fibro out there (in my opinion). I was diagnosed in 1993. Yes, I've been living "the dream" for nearly 20 years. In that time, I've loss the use of my left arm .. but it came back, I've lost my sight … but it came back … my liver function was alarmingly compromised … but it came back …. I've lost the ability to walk … but it came back … I lost the ability to think clearly … it's mostly back except for the bouts of brain fog that fibro-sufferers will tell you is the WORST symptom of the syndrome. I've lost lung function and it looked like sarcoidosis … but it came back (think of a lung looking like shattered glass on an x-ray) … I've suffered from Sjogren's (an eye disorder) … but got better … I've endured kidney stones … but they come and go … and lastly, there was this skin thing. It was the worst horror of all (and I can tell you a little bit about medical horror) … nothing hurt. And by "nothing," I mean … NOTHING hurt. Every nerve on my skin was on fire. The only thing that took the pain away was if someone grabbed me and hugged me, or put a hand on my arm, or clutched at me. Other than that, everything was searing pain. That went on for months. The meds they prescribed deadened everything .. including my imagination. They took everything, and when I spoke, I sounded like I had had a stroke. I couldn't form sentences. It was a nightmare. …. and in January …. it went away….In 1994, a friend of mine died of Fibromyalgia at the age of 47. Brina fought it to the end. It lodged in her kidneys. She ended up on dialysis. I'm now 47. I think about her. A lot. It's something that won't go away….Keep goin', Murph. It hurts, but keep walking, keep moving. Don't quit. Stare it down and don't give up. Don't give in. The best advice I got from a doctor was snarled through a telephone from Anchorage. "Listen, Amy, I don't give a shit how much it hurts, you need to walk. Every day." Every day. Every day. And I do. And I'm sure it helps. I don't want to imagine what it would be like if I didn't keep walking, keep moving … keep a sense of humor. Those are the things I can't let go away…. ♥

  3. Well, you can be weird about these things. If it had embarrassed you, well, too damn bad. 😛 And I guess it wasn't so much thought provoking as made me look at what you'd described and evaluate whether or not I'd be able to do that.Blech, sorry this wasn't clearer; migraine came back to bite me in the ass. >.<

  4. First: *hug* Thank you for telling me all this. You're a much more encouraging voice on the subject than any discussions on medical websites. Compared to most of the illnesses, not just fibro, that I hear about, I count myself pretty damn lucky. I mean, sure, this is something I'll be stuck with forever, but it could be much worse.I'm not going to list all of the symptoms I've experienced at some point or another and say it's because I must have fibro. But there are some things, little incongruous things that cause minor pain and hassle, that I either wrote off to other explanations or just ignored, and the diagnosis DOES make those little things make sense. Numbness and tingling, migraines, and SEVERAL areas of pain if not pain all over–those aren't mentioned as MPS symptoms. But when I was diagnosed with it, I'd gone in for wrist pain, having believed for years it was carpal tunnel syndrome.I'd been experiencing problems in my back and shoulders, and have always had awful knees and ankles, too. The ankles I blamed on having sprained them as a kid; the back, on genetics since my mom has a bad back too. The rest didn't make sense, or I'd just say it was stress. But then I started having days where I wasn't stressed and I still hurt, like today. The most stressful thing I've done is yell at the dog for barking at neighbours, but my head is killing me. Turning my head hurts. And I've been glad no one's here to see me get off the couch–the process is slow and excruciating. I have to carefully turn myself without shifting, then lever myself off the couch. I've made up my mind on a compromise, I think. I'm going to write down the symptoms–the ones I've experienced consistently and repeatedly on several occasions. Much as I hate to go to a doctor, maybe because I may OR may NOT get a diagnosis of fibro (because if I don't, then what?), I'll make an appointment, and I guess we'll see what happens.

  5. There's something that you could look into for your dog, that would help with control no matter how good or bad of a day you were having (and it's nothing as cruel as a choke collar). It's called a gentle leader, and it works wonders (or so I hear – I haven't been around a dog in a while, and I'm a large and strong guy, so I'll just yank the dog back).Basically, it fits around their neck like a normal collar, but over their nose below their eyes as well (which freaks them out the first time they put it on, just fyi – but just because it's new). Dogs have a pressure point on their snout there, so when they pull, it tugs on that, and forces their head down.So, they don't pull. At all.If you would like to hear more about it, I can put you in touch with my roommate. She worked as a vet tech for a while (and is where I heard of this!). It could certainly help, and keep you able to walk your dog without a problem.

  6. I've heard of them. I know it as a Halti. We had one for our dog at home, a German Shepherd/Lab cross. I suppose since she died in December I could ask my mom for it. But really, the harness works, and I can see my dog freaking out over a Halti and refusing to wear it. (She would, too.) I just need to stop being too lazy to put her harness on, even if it's for a brief trip out for the bathroom.Thanks, though. ^__^

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