Long car rides and living with chronic pain

Reposted from my SFHEDS Facebook page (renamed Kendra N Myles to reflect my real name – finally). I also shared this on the Our Stories of Strength’s Facebook page, because THIS is one of my own stories of strength.  I wrote this post while dealing with the aftermath of sitting in the car for over 18hrs, during our drive home from Florida. Sitting is by far one the most painful things for me to do and it’s a constant challenge. It’s especially difficult because I am now on the computer so much to write and do other online-based work.

I’m still searching for the perfect chair, position or anything that helps me tolerate sitting and working, even for five whole minutes. I do have a treadmill desk, but it’s too low and causes mid and upper back pain to flare also.  When I am working, I do this constant dance between strange yoga positions while sitting, kneeling on a beanbag cube, or stretching while sitting and trying to work.  You will never catch me sitting too long anyway, unless I’m surrounded by beautiful blue water, laying in the warm sun and have a frozen cocktail in my hand. That’s pretty much the only time I will drink more than a few sips of alcohol also.  

Movement keeps me going. It’s momentum that helps me manage chronic fatigue and it is my biggest coping mechanism for chronic pain.  I’m not talking about working out, I’m talking about the fact that I hardly stop moving unless I have to. I’ve never been someone who sits on a couch and watches TV or lays in bed. Laying in bed has its own fair share of issues. No matter what, I am constantly shifting positions – seated, standing, or laying down.  I don’t think I’ve ever slept through the night, even as kid. I’ve always dealt with some kind of pain.

Being in constant movement, allows for me to shift positions all of the time. If I have to stand in one place for a minute or two, I start doing ballet exercises in place – i.e. heel lifts, first position glut squeezes, etc. I move a lot even sitting or laying down, and I take any opportunity to engage and work my muscles. Doing so has always helped take the pain away, even for a second or two. However, all my little tricks and coping mechanisms prove nearly impossible when having to sit in a car for many hours. Read below: 

I will be completely honest when I say that long car rides are the bane of my existence. Now I know why my husband was totally cool flying me to Florida after the EDNF conference, instead of me driving with him and the kids. I’m guessing that I’m not so fun to be around when I’m in so much pain. I have been known to start pounding on my legs, in order to help diffuse where and why I have the pain in the first place. 

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Car yoga – a safe stretch for me. No different from if I had my legs straight in front of me. Knees aren’t hyperextended.

The pain is excruciating and the muscles spasms that I get from sitting too long are horrendous. I try to work my muscles as much as I can in the car and when we stop, but it’s always such a hard cycle for me to get out of, once my legs have been cramped, or I’ve sat too long. The spasms become so tight and strong, that I can barely hold a squat (ie. In a public restroom), before my legs feel like they are going to collapse from fatigue. The fatigue is from my muscles constantly working so hard. When this happens, I am always reminded exactly why working out & staying mobile throughout the day is so important. If I wasn’t as active as I am, this is how my body would feel all of the time. I usually have constant muscles spasms and contractures in some places, but staying active and keeping my muscles strong, helps them not have to work so hard all of the time. However, sitting is a different story for me. Standing is a bit more bearable, because I can do ballet exercises while standing or modified squats, but sitting for extended periods of time is awful. 

When I sit for too long, in a car or at a desk, all the little accessory muscles around my hips, pelvis and lower back, don’t have the rest of my body or the larger muscles of my lower half to help stabilize my pelvis and lower spine. Having a Hypermobile pelvis with a sacrum that constantly slips out-of-place (I usually pop it back in by contacting my gluts), bursitis in each hip, tethered cord, lordosis in my lower spine and issues with arthritis and degenerative discs in my lumbar spine (yes, this is just my mid-lower part of my body. Does not include other areas and issues there), doesn’t help one bit.

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Stretching a bit more, but not too much. Legs are not in total v position and are more in front of me than to the sides. I’m also not bending over too far.

Why am I saying all of this when I usually don’t discuss my issues? Because this is life with EDS. It’s real. I have my own fair share of daily struggles, but I’ve chosen to not focus on them. Doing so has never helped me in any way and always makes me feel worse. Leg pain is by far one of my most challenging issues. It makes me want to punch a wall. And I don’t really ever feel anger like that, but I do when the pain is this bad. 

So, here’s what I’m going to do, because I really don’t feel like working out. I have to and need to — this is why I pick something small to do & I do it for “Just 5 Minutes.” Just5Minutes is my own rule for myself to get me going when I’m not motivated or I’m in pain. It’s tangible, measurable & anyone can do something for just 5 minutes. It holds me accountable to myself for the promise I made years ago, so I wouldn’t end-up bed-bound, unable to walk and in constant pain like my Gram. My mom was on a similar path, but for different reasons. I knew as a kid that if I didn’t change my mindset, I would eventually become what was around me, because that’s all I really knew and all I saw.

I also know now that this is par for the course – part of the roller coaster of living with EDS. I’ve been here before, thousands of times and it gets better, because I’ve learned what I need to do and what I do not need to do. I also don’t freak out and think this is it, my body is falling apart and EDS sucks. EDS is hard, but harboring negativity only causes more physical pain and that is a proven scientific fact.

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Stretching – just enough, but not too much to help with the pain

I’ve also learned that as much as I want to stretch (not too far, but I did stretch some bc it helps relieve pain temporarily for me), it doesn’t help me when my muscles in such tight contractures.

For my Just 5 minutes today, I’m going to do an online Pilates video & barre video. I’m also going to use my foam roller and trigger point balls to help relieve knots, as well as do a little yoga for my IG challenges. And if needed, I will take something to help me get through the night. That’s what the medicine is for – times like this and once I’ve done all that I can to help myself.

Then tomorrow, I will get up and go about my day like normal. However, I probably will head to Zengo to cycle the crap out of my legs.”

#RealLife #OurStoriesOfStrength #LiveEDSStrong

Please read the disclaimer here. My way isn’t the right way for everyone and I’m not stating that these stretches are advised.  Performing safe stretches is one of the ways that I’ve learned how to cope with severe chronic leg pain and it works for me. However, that does not mean it will help or is right for you. We are all different. Please seek the advice from your physical therapist or physician, before performing stretches that you have been advised against or have not done in quite some time. Attempting any of the stretches seen in the pictures included in this post, is done at your own risk.