I think that it’s safe to say that no one likes their chronic pain; if you do please track me down and explain it to me because I couldn’t imagine. Anyone who suffers from chronic pain most likely has some form of anxiety and/or depression. Chronic pain is no joke and it takes a serious toll on a person emotionally and physically. This kind of pain is a joy taker and a life stopper and it’s one of the toughest pills I’ve had to swallow. So why would I say that chronic pain, or even any pain at all, is necessary? People that don’t even suffer from chronic pain pray pain away. Chronic pain is amplified because it will trigger deep emotions. It will remind you to think about how you can’t physically function like you maybe once did, and remind you how one day you may never function as well as you do now. Chronic pain is a reminder. The very raw reality is that chronic pain is important for those of us with chronic illnesses. Imagine having Ehlers-Danlos Syndrome and not feeling pain at all. You wouldn’t know when to slow down to give your already sick body a break. We would literally run our limited bodies into the ground. When a healthy and normal person dislocates their shoulder, that is an abrupt signal to them to stop what they’re doing immediately before any further damage happens. That’s the exact same with people with chronic illnesses, it’s just that our bodies truly are limited in what we can physically do. Our bodies are constantly sending signals to us that we cannot push ourselves any further and that is why it is important for us to listen. We cannot listen to anyone outside of our own body because they simply do not feel what we feel, therefore cannot tell us what our own limits are. They cannot tell us what our own limits are. That doesn’t mean that they don’t try. I forever have people trying to think for me when in reality they just can’t. Even doctors can’t tell you what your own limits are when it comes to chronic pain. It’s all about learning to balance your physical capabilities and how far your willing to push your limits to accomplish tasks. Pain is a direct message to you straight from your own body, so don’t let anyone else try to interpret it for you.
Tag: Ehlers Danlos
The Love-Hate Relationship a Person With Ehlers-Danlos Syndrome Has With Their Bed
When you have a chronic illness and you think of comfort, one of the first things you think of is most likely going to be your bed. Rest is very important when dealing with any illness, so why would there be a love-hate relationship with your own bed? It all depends on the illness!
The illness I am facing is Ehlers-Danlos Syndrome (EDS). EDS is a chronic condition that has to do with collagen. The collagen in my body is faulty and doesn’t do what it is supposed to and it wreaks havoc. Collagen is a protein found in connective tissue — it’s what holds our bodies together. Our tendons and ligaments do not hold our bodies together very well at all. Ehlers-Danlos patients are prone to chronic subluxations and dislocations and each patient is as different as a fingerprint. I struggle with full-shoulder, clavicle, rib, and hip dislocations and subluxations as well as craniocervical instability (CCI). The running joke in my family when it comes to the CCI is that my head isn’t screwed on straight. That is the best way I can explain CCI to someone who isn’t familiar with medical terminology. I use that joke to lighten the mood so people are most likely to hear me out.
Now that you understand a little better the basics of not only EDS, but my EDS, let me paint you a picture of sorts.
You’ve been going all day long and you have really pushed your body past its limits. You have been looking forward to the moment you can come home and crash and give yourself an actual break. You shower before bed and that takes a good bit of energy out of you, but it had to be done. You go to change into some comfy PJ’s and while you’re trying to put on the bottoms, your hip subluxes just enough for you to really lose your balance and you hit the ground. Bam, you dislocate your shoulder and hit a nerve. No big deal, I’m pretty much used to the pain by now so I just laugh it off as I head for bed.
I go to climb into my bed and as I’m trying to get comfortable, the weight of the blankets is almost too much for me to stand. Pulling myself into the sheets sends my hips and ribs into a panic. One hip subluxes and a couple of ribs dislocate just from the simple task of getting into bed. Now I’m struggling to breathe from the excruciating pain of dislocated ribs. I take a break from trying to get comfortable and just lay there and wait for my body to calm down.
Once everything has calmed down I begin again. I have a lot of pillows because I position them in ways where I’m less likely to dislocate something in my sleep. Usually by pulling one pillow between my legs and wrapping my arms around another pillow. The movement of simply dragging those pillows into position is yet a struggle. This time my shoulders are falling out of the socket and my clavicles are subluxing. I fight through it all even though it feels like I am made of jelly and my bones are moving freely as they wish throughout my body. I fight to get comfortable.
I lay there in what I assume is the position in which am going to fall asleep in, I realize this is not at all comfortable and I need to roll over. The clothes on my body are suffocating me with every move because my joints are too weak to fight the friction that is my pajamas against the sheets and comforter. Finally, I physically fight my way into a comfortable position and doze off for a couple of minutes, only to wake up to a pinched nerve. When your body relaxes, so do the muscles. When my muscles relaxed, my shoulder dislocated and a nerve got hit. Now my entire arm feels like it has been struck by lightning and is now on fire accompanied by a tingling sensation. I’m wide awake wrestling the sheets and clothes trying to get comfortable, yes, again.
This time I find that “sweet spot.” I am thanking the good Lord that the fight is over… and now I have to use the restroom. You have got to be kidding me. I fight the sheets off of me and I climb the mountain that is my pillows to get up and go to the bathroom. I am beyond exhausted at this point. I get back into bed, and you might as well reread everything you just read. This is my life when it comes to sleep. But you see, I rarely, if ever, truly get comfortable. Not just when it comes to sleep, I mean in general. My body is so off balance with the constant subluxations, I always feel like something isn’t quite right. That feeling is always accompanied with pain so that’s why you will find me wiggling and moving to try and put something back in place. It is a constant battle between mind and body.
My Ehlers-Danlos people are the real fighters.
Introduction to Ehlers-Danlos Syndrome
Hello Everyone!
I’d like to start my blog off with a quick explanation of what Ehlers-Danlos Syndrome is, so from here on out you will be more familiarized with what I will mostly be writing on. I am very grateful for the love and support I’ve been given from not only friends and family, but my EDS family as well. When I write, I’m not only speaking for myself. There is a whole community of people out there that are fighting alongside me.
Ehlers-Danlos Syndrome (EDS) is a genetic chronic illness that involves faulty collagen. Since the collagen in an Ehlers-Danlos patient is faulty, anything in the body that has to do with collagen is fair game for the illness. Collagen is the most abundant protein and it is what holds us together. Your bones, muscles, skin, tendons, and ligaments have collagen in them, as well as your corneas, intervertebral disks, blood vessels, gut, and teeth. Fun, right? Keep that in mind when speaking with an “EDSer” because I like to compare Ehlers-Danlos patients to finger prints, each one is different. Where my shoulders, ribs, clavicles, and hips are what I am currently struggling with, you may meet someone tomorrow that has EDS with a completely new set of signs and symptoms. Not only do you have to learn each one of us personally to truly understand our problems, but our issues can also worsen over time and we will most likely slowly progress downward. There are 3 basic type of Ehlers-Danlos Syndrome and they are Classical, Vascular, and Hypermobile. The classical and vascular can be confirmed by genetic testing however the hypermobility type cannot. Hypermobility type Ehlers-Danlos is diagnosed using what is called the Beighton Scale. Ehlers-Danlos patients have a wide range of really weird signs and symptoms which make it difficult for doctors to diagnose when they haven’t been trained to look for it. The biggest signs of EDS would be the chronic dislocations as well as subluxations, and a wide range of motion. The symptom list is very long, but for me, chronic pain is at the top.
I believe that this new generation of doctors, though, is learning about the illness and will know to at least look for the signs in their patients. That is a BIG deal and I believe we are coming a long way. There is no cure for us. Doctors can only treat the symptoms we face. Although I do also believe that there will one day be better treatment plans available which is why I fight every day.
I truly appreciate your interest in this illness. My main goal is to spread awareness of not only the illness, but the symptoms that you simply cannot see. You never know what someone is battling until you take time to know them.