One Person's Chronic Pain Journey

I think part of the reason that I wanted to create Sacred Health (this is Sabbath speaking here) is because there are experiences that are so difficult for other people to understand, unless you've taken the time to be around those people OR....unless you've lived it. I was sitting in my bathtub contemplating that this morning. Trying to explain trauma, pain, mental health impacts from chronic disease, how experiences in our past have shaped our outlooks......these are all individualized to the person as a result of living through those problems. Nobody has the same pain, nobody has the same presentation, and nobody feels things like anyone else. Because we aren't looking through just one lens, but hundreds. I really feel like the experiences of individuals is like the most complicated Kaleidoscope on the planet. And it all exists in the space within our minds. With that being said, I've had a lot of time over the years to experience, define, and ponder pain. I'll leave the emotional pain out of this, that's far too complicated for one blog post. But the physical pain has a simpler explanation. And I find that even if we can't understand the emotional trauma, many people can relate to the physical experience of pain. A little background here: I was diagnosed with Ehlers Danlos several years back. In the neighborhood of 3 years? Between now and then, the diagnosis has changed from Hypermobile to Classic, I've added a few more fun problems, most importantly, Leukemia. This is significant because the source or cause of pain is a known factor. Which I find to be an incredible blessing. KNOWING what it is, means that I can explain it, manage it with greater understanding, and find others with similar issues that understand ACUTELY what it feels like and talk to me about things that work for people 'like us'. I am grateful for the awareness.



My pain can be categorized into 5 areas. I'm gonna try to explain each one of them. 1) Tension.


In your body, we have muscles that provide strength and tendons and ligaments that provide stability and movement. Tendons and ligaments are fibrous and firm. Tight and rigid. They support the joints. Now just imagine, if instead of those being rigid and stable, they were made of rubber bands. And not good rubber bands, but rubber bands that are old, and can crack easily, and have been overstretched.


Imagine this - you are on the moon. If you don't apply weight to your body, you'll float away into space. So, you find some weights, and you tie them to your body. But the only thing you can find are really stretchy, crappy rubber bands. So, if you try to pick up the weights? They stay on the ground, and the rubber band just stretches. If you try to pick them up too fast? The rubber band snaps or tears. That means, in order to stay stable, or to feel held together, you have to tense your muscles to keep things from just falling apart. My hip, for example, should be a nice stable smooth joint with these lovely tight ropes of tendons and ligaments holding the bones in alignment, keep the muscles in the right place, and the blood vessels and nerves too. But instead of stability, people with Ehlers Danlos have massive amounts of INSTABILITY. So they tense. Constantly. This constant tension is exhausting. Muscle pain and cramping that ANYONE would feel from overusing or overtraining a muscle is constant. For me, the greatest areas of instability are my hips, my ribs, my ankles, and my wrists, with an extra fun dose of tension in my neck. Yes, that is a lot of places. Also consider, if all you do is TENSE a muscle, you aren't really creating a muscle that has been trained with movement. So you lack a sense of being able to move the muscles through contractions well. It's bulk without grace of movement. Which is simply ineffective.


2. Joint.


With those crappy rubber bands, those smooth moving joints cannot be smooth. So, say you've got a door. And instead of factory installed hinges with a supporting door frame, you've got a slab of wood, with a few holes, tied to another board, with no supporting frame. Again, the big issue is instability. When joints don't glide and move in a smooth pathway with supporting strength and framework ALL day long? I mean, it starts to hurt. Ya know? It's clunky, it's NOT smooth, it breaks down and wears away at the bones, and honestly my joints swell very easily. For me, this is a deep ache. If I'm going about my day like normal, it's gradual, gets worse throughout the day, and is made exponentially worse by the chemotherapy medications I take, just as known side effect (insult to injury if EVER I saw it). If it's a busy day, or I'm at work? Man. It starts early and just gets worse.


The interesting issue with this is that with hypermobility issues (which most people with connective tissue disorders battle regardless of their subtype) the hyper part of the mobility in the joints is a problem in and of itself. Your joints have a natural end place. This is defined by the simple bone structure itself, but also by the connective tissues (tendons and ligaments). With nice strong and stable connective tissues, again, they are strong and fibrous, like a nice thick climbing rope. Imagine a door with a length of rope attached to the frame and the door. Whether you open it quickly with force, or slowly with intention, it would STOP at the point of tension. With people that have connective tissue disorders, again, that's a rubber band. Which means that door can swing PAST the stopping point. Especially if there is any force or effort behind it. So, you move a joint too fast? You go too far. It's a hyperextension. And it often causes tears, pain, dislocations, and furthering instability.


3. Nerve.


As a result of these unstable joints and joints, your nerves are impacted. Pins and needles, electrical zaps, numbness and tingling? All part of the drill.


4. Floating Away.


This is literally the only way I can think of to describe this. I love baths. I love laying down on the sofa. But just like that scenario where you are on the moon, and you have weights attached to your body - let's expand that a bit. Let's say when you are standing, the weights are the exact length they need to be to sit on the ground. But, if you move to a laying down position, you are floating there, while being held down by the weights. So it's a feeling of floating with a feeling of painful tension at the 'bottom' of it. If you've ever thrown your back out, you've probably experienced this in the moments leading up to your back going out. Baths are my favorite, but without Epsom salts, sometimes I feel that floating pain in them. My husband offers me the couch all the time, but laying down doesn't weigh me down enough. It's weird, but true. 5. Lifting Mass.


Again, this is a weird issue, but I know it's not just something I have. A lot of times, if I'm moving my body, and I either bend at the waist, or extend an arm all of the way, or spread myself out in some way, trying to pull that extension back in is either extremely unstable, painful, or just straight up impossible. Again this comes back to having tense muscles that don't work through motion, and then don't have stabilized joints, or supporting connective tissues. If I bend at the waist, I often have to stay bent, and move my lower body underneath my chest, just to lift the mass of my body. Or, if I bend my arm all the way out, I might have to move my whole body underneath my arm just to bring it back to center. It's especially problematic with my back. If I were to simply straighten like a lot of people do, I would throw out my back.



I have good days and bad days. Good weeks and bad weeks. I know that there are things I can do to make this a simpler issue, losing weight would be a big one, but my uphill battle with that is problematic. Medications that cause weight gain, injuries happening so easily with the simplest and lightest of movements, emotional eating as a result of dealing with chronic pain, and heart issues and gastrointestinal problems.......excuses are excuses, but they complicate the playing field. But none of that changes the fact that pain exists. And dealing with pain is a complex issue. I've found that medications for pain are simply bandaids. Lifestyle changes, dietary changes, using the proper movement, supplementation, and most importantly......acceptance that this is who I am, and the journey I'm meant to be on. Those are the things that help. Good can come from places of despair and pain. So much good. I accept my pain experience for what it is, and in a way, I'm grateful for it. I think it's helped me develop a sense of empathy and understanding with my nursing patients that I would never have had the opportunity to have otherwise.


As far as Sacred Health goes - we absolutely have tools for helping people with Chronic or Persistent Pain issues. We have massage, SomaYoga, nutritionists, reiki, Ayurveda, and Hypnosis. But most importantly what we have is a crew that all UNDERSTANDS pain, trauma, and chronic disorders. If you've got questions? Just ask. We're happy to be an ear. Love, Sabbath

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