Nobody has meant it as a condescending thing thus far. From the outside looking in, they see someone that goes through their life in considerable pain yet you’d never know from looking at her. They hear my story, and automatically picture themselves in it, while relating what smaller influences have brought their lives to a screeching halt. I can see where it can seem like a super power.

She’s walked on a dislocated hip…
Worked through a migraine…
Got an stent removed from inside her ankle during an office visit…
IT’S EDS-WOMAN!!!

However, I don’t have a naturally high tolerance for pain. I adapted out of necessity. It’s not a pretty story, and I seriously wouldn’t wish that journey on anyone. Personally, it’s not a question of being brave or strong. It was simply what I needed to do in order to survive.

There is not a day that I am pain free, so much so I had a full blown panic attack when I was on dilauded after my first ankle surgery. Why did I panic? Because taking an extra pill made the pain go away. My brain had no idea how to handle not feeling pain, so it freaked out and screamed that I must be dying because it couldn’t feel things. It was not a fun time. I’ve been told I’m a trip on anesthesia and during a migraine. Give me meds that take pain away though…and I’m Chicken Little and everything is about to end. The same happened on nitrous oxide at the dentist. The pain was there but distant and…my brain freaked out and it screamed that we were dying. Then it decided to panic and run through a mental checklist of things I could do. Could I blink, could I swallow, could I breathe, could I move my fingers, could I move my toes? All because the pain wasn’t in the forefront where my brain thought it needed to be. My brain is obviously a masochist at heart.

Now, my daily pain varies from a general body ache in most of my joints to a highly significant pain that is nearly overwhelming. It doesn’t happen to a pattern or stick to a schedule, so I wake up not knowing what the day will bring. But, I always have something to do. A job to go to. Chores to try to keep up with. Pets that need attending. Life doesn’t stop because I’m in pain. My snakes don’t care if I have a rib out when it’s feeding day. Things need done, and the world waits for no one. At least…that’s what I told myself. Over the past few years, I’ve been forced into a situation where I need to learn to listen to the pain signals if I don’t want to push myself straight into a wheelchair. But I started pushing when I was very young, so it’s a hard habit to unlearn.

I was told often, that my pain wasn’t real enough for me to be inhibited by it. Doctors, teachers, family, friends. It was always said that I was just a weak girl that needed to get outside and exercise. I was a drama queen for saying normal activities hurt. Girls just need to learn that discomfort isn’t the pain they make it out to be.

My response to all of that wasn’t to get angry, it was to internalize it and believe that I really was weaker than most around me. After all, I could never do a pull up or a push up. Running hurt. I had trouble gripping things sometimes. I could bend weird but I still couldn’t even do a split. I even wanted to cry because my hands hurt bad when the weather turned cold. But nobody else my age seemed to be impacted as badly as I was. My little kid brain, took it as I truly was the weak little girl that they told me I was.

I wanted to prove that I could be strong, that I could learn to be better, be like all the other kids. So I tried to participate, even though my ankles rolled all the time. I’d keep going even though it felt like my spine was on fire. If everyone else could do it…I was going to try and prove I could too. I didn’t know that the people I was trying to measure up to, never felt the pain that I was in. Nobody told me that my muscles were actually pretty impressive however my ligaments came from Gumby and that’s probably where my pain originated. Nobody bothered to tell me that I was comparing myself on an unfair scale. Nobody bothered to even look at it in the first place. So I persisted.

So many people say things about how they could never accomplish what I have. Perhaps I’m a little bit jaded, but I can’t help but be slightly insulted sometimes. To me, it was never presented as an option to give up or to live on pain meds. It was being thrown in the deep end of a turbulent pool and told to simply learn to swim because all the other kids your age have. If you aren’t told that the other kids learned in the shallow end of calm waters, you assume you’re flawed if you can’t accomplish the same. It had nothing to do with being brave and on a noble quest to overcome and everything to do with just trying to be a normal kid, and later, a normal person. And spite. I’m definitely motivated partially by pure spite.

Yes, I can go to work with a migraine and function pretty well. I can act fairly normal when I’ve got a joint out of place. I’m willing to sit through procedures that hurt if that’s what it takes. But at what cost did I get to that point? I can’t say that I’d take it back, or I wish things were different. I can’t imagine going through life any differently. If having EDS means that I’ve got a life of pain, it works out in my favor half the time to be able to ignore it. Try and remember that it also comes with not being able to easily recognize that something serious is going on. The confusion of not knowing whether you should bother your doctor to see if an injury is worth medical attention. Doctors that are unwilling to help you because if you were really in pain, you wouldn’t be able to calmly discuss it. All because your brain has just accepted that significant pain is normal, so meh. Whatever.. Not to mention that when friends come to you with a painful experience, you come across as cold and unfeeling if you’re not careful. “You dislocated your finger? Okay…but…why are you freaking out about it. Just breathe. What do you mean you need help getting dressed? I don’t understand, it’s just one finger, all your others are fine…” And there’s always the really morbid sense of humor that can throw people. Nothing like casually suggesting someone take a chopsaw to your ankle to get most people in a room to look at you in horror.

I have no real concept of what normal life is like aside from an understanding that what I experience is probably different. I’ve had my surgeon tell me how well I’ve handled procedures they’ve done in the office with only some lidocaine. Yet I’m sitting here livid at my system for going into shock when I’m consciously alright from it. I’ve been told I’m weak so often and for so long, I honestly thought it was meant in a patronizing way the first time they said it. It never crossed my mind that the way I go through things was actually impressive.

Let that sink in for a minute. The trauma I’ve experienced is enough for my body to go into shock. But I’m so used to it that my brain doesn’t get swept up in it all the way. You’re not really supposed to be in a mental state to be annoyed at shock response to trauma. How much trauma do you think it takes to get to the point where the brain normalizes it to that point? To be sitting there, pale, shaking, nauseated, sweating, light headed, and to also be annoyed that you have to sit back because your body is freaking out over what you perceive to be “a little pain”. Fighting with yourself and trying to will your body into functioning. There’s been more than one occasion where someone asked if I was okay, and I replied in an emotionless voice, “Yeah, just shock response”

So while my high pain tolerance has been something that has helped me to survive and work past some of the hurdles in my life. I hope you are never in a situation where you body is put in the position where it has to do that to survive. My heart goes out to all those that have had to learn it, whether from something like EDS or another form of extended trauma. I know it can feel isolating, and there was a previous post that touched on some aspects of that as well. I know it can feel like you’re less human sometimes. It may not be traditional heartbreak from a lover, but it can sure feel like a part of you has been ripped out anyway. We may seem super human, or maybe less human, but really…we’re really just more broken than most and a bit on the numb side.

When Communication Looks Irregular

As I’ve personally had a recent flare of significant pain, the messages of a few friends have brought to my attention that it can be a bit confusing from the other side. They see me sharing a video on Facebook but not respond to their private message or answer a text. Or knowing that I’ve gone to work yet I’ve not picked up the phone. There is, of course, an explanation and I’ll try my best to illustrate it.

All communication is taxing, but in varying degrees and in different ways. Sometimes, there are also ways to work around some of it and appear better than how we’re actually doing.

Autopilot in People

“Being on autopilot” is a term I’ve used for a long time now in trying to explain how I can work and I seem fine. I’m sure many of have experienced something like it. Instead of remembering a phone number you remember what order you pushed buttons in. You don’t remember a lock number, but find that as soon as you do it, the memory takes over and you punch it in. You can’t give someone directions, but you know how to get to a certain location because you’ve been there so many times. It’s a form of muscle memory, where you do a task to often that you no longer have to think about it…you just do it.

Interacting with people can be very similar, especially in a work situation. People come in, the greeting is always the same. They often ask the same questions I’ve heard for the past 10 years that the answer is automatic. On good days, I’m alert and completely aware and can have a really engaging conversation. On days like recently where there’s significant pain constantly that makes it hard to concentrate? Most visitors feel like I’m aware and alert and having an engaging conversation because of that muscle memory. I don’t have to think about the smile, it comes when I’m there answering a common question because that’s what I’m supposed to be doing. There have been occasions where I feel like I’m half in a dream world because I can feel and hear myself responding but all my conscious mind is doing is wondering what time it is so I can get off my foot or change a dressing and be far away from any light source. Though I’m grateful for the ability, it can be very surreal and distressing in the moment.

I’ve done things like take out the trash and cleaned without realizing it because it was just part of the daily routine that my brain had stored away “this is what needs done”. The hard part is that is that for others watching, it seems like I’m just a tiny bit off because I appear pretty functional, maybe just a bit weird.

Friends Aren’t Autopilot Material

There’s a lot in life that can’t be put on autopilot though. Anyone I’m close to? Those aren’t a dull, everyday interaction. There’s engaging conversation on a wide variety of topics that you need to be a willing participant in. So while I can have what seems like a productive day at work, knowing that a friend is calling can present more of a challenge than I’m able to take on at the moment.

Sounds a bit weird, I know. Friends are the ones that are supposed to be your support network and the ones you can be yourself around. Problem is, on bad days, we’re not even ourselves. I’m not just grumpy or feeling a bit anti-social, I literally cannot give them the attention needed to interact. We had a friend over for dinner recently and there were several occasions where I have no idea what they were saying. It was such a taxing thing, trying to listen, that my brain just kind of shut off and I stared off into space in the middle of the conversation. I couldn’t even focus on words to say aside from being able to mumble “Sorry, pain” and just cuddled in a blanket on the couch. A part of me could see that they were frustrated, but the rest of me couldn’t even figure out words to speak and it just frustrated and upset me more…making everything in my own head feel worse.

When The Streams Cross

This leads into one of the possible reasons we seem to cancel plans last minute. Sometimes, autopilot can seem to take over when we’re on the edge of being not okay, so that when someone asks “Hey, you want to come to the movies with me tonight?” your automatic response is “Sure!”. Not because you’re just agreeable, but because you like to hang out with those close to you and a part of you really does want to go. You’re not thinking in the moment “Oh, but it’s slightly hard for me to think about complicated things and I may get worse over the next hour. I may want to reschedule”, you’re thinking “Awesome! Let’s go!”.

Now, on bad days, they can hit quickly or slowly, but either way, you find yourself unable to complete a task and it takes an inordinate amount of brain power to figure out what to do. Simple tasks become as complicated as doing complex algebra…while drunk…and high…and on a sedative…while dizzy. I have been in tears because I couldn’t understand how to cancel plans with someone. Not because I was scared I was going to upset them, but because I just couldn’t figure it out. Do I call? Where’s their number? Do I text? Can’t…think…words.

Over the years I’ve learned how to cope with this and work through it as best I can, but that took a lot of experience and a truck load of stubborn ambition. Despite that, there’s just days where I can’t people. My brain is so overwhelmed, I can’t have a conversation. It’s just not going to work no matter what I do or what meds I do or don’t take. So by the time I can figure out or recognize that I need to cancel plans, it can be right as someone pulls up to pick me up. It’s not intentional, and I can promise that I hate it more than anyone I’ve had to cancel on.

Like A Ton of Bricks

One of the other reasons that we seem to be unpredictable is that…well…we are! I can be having the best day, fantastic work day, be getting ready to go without a care in the world. Then, I pull my hip or my knee or my ankle putting on my shoe. (Yes, seriously something that basic. I’ve jarred my ankle, slipped my hip, and subluxed my knee putting shoes on) There’s no choice but to cancel. It’s not like I decided to do gymnastics so I intentionally injured myself so I can get out of participating. But the pain has hit and the injury needs attention unless I want to be completely nonfunctional for the rest of the week.

Recently, I’ll be having a decent day and all it takes is stepping on my braced ankle the wrong way and I’m down for the rest of the evening. At this point, I know that either I can still go and be restricted and miserable and just want to go home the whole time, or I can cancel plans and take care of myself like I need to. So while it may be frustrating on the outside looking in…just imagine being in the other side of that.

We’re Not Avoiding You, We’re Avoiding Pain

So with all of that, please try and understand that while it seems like there’s no logic or pattern to what we’re doing. It may be confusing that we call and talk one week and then we disappear to the point you consider putting our face on a milk carton. We’re not being terrible friends intentionally. We probably feel MORE isolated than our seemingly odd behavior makes our loved ones feel. But for us, it’s like being held hostage by your body sometimes. You never know if it’s going to let you out and enjoy the fresh air for the day, or lock you in isolation without warning.

We’re not trying to push you away, we’re trying to survive and sometimes it’s just a bit difficult. We still love our friends, and we still need them. We just also just ask for a bit of understanding of what this personal prison is like while we’re trying to do it.

She says “Oh.”

*Fact: You never want to hear your doctor say “Oh” when looking at any test results

I say… OH???
Her…Your neck is bad. Really bad
Me…….. >Can I just get a new body? Because this one sucks donkey turds.
Her….. No, but let’s see what we can do.

Increase Gabapentin to max dose.  Another round of my favorite <snark implied> nemesis, methylprednisone.  Add Topamax for migraine control and to help with the tremors in my hands caused by the nerve damage in my neck.  Order an inflatable home c-spine traction device.  Caudal injections in my l-spine and SI joint . She wants an epidural block done on my c-spine .  All of this in an effort to put off cervical spine surgery for as long as possible .

It’s one of those days where too much happened in a very small time frame.  And now, I’m sharing my pity party with all of you.

But, I will process these new problems, and I will add these new meds to my overflowing pill planner.  And most importantly, I will tell myself what I always tell myself whenever a new roadblock pops up.

It is what it is.

If I cannot change the facts, fix the problem, well….. there is no point in making myself miserable over it.  We cannot dwell on that which is impossible to change.
               
*Pssssssst…  I still want that new body.  Preferably one about sixty pounds lighter, and ten years younger. 

Why Are They Considered Bad?

Do a quick search on Google and you’ll get a ton of articles that will give you a list of what they consider negative emotions and what to do to get rid of them. We’ve also all had that well-meaning individual that when we’re feeling bad does their best to pull us out of it. But what makes them so bad?

The biggest reason is that they are uncomfortable to experience. Even when reading over the small list I had above, some readers will internally cringe or feel a wave of sympathy. Some may have even gotten uncomfortable at the title of this article. They’re not nice things to go through. As we develop into adulthood, we’ve learned along the way that uncomfortable equates to dangerous and dangerous equates to something to avoid. It only goes to follow that emotions that make us feel that discomfort, get categorized into bad.

Another reason is something that I’ve mentioned in an earlier article about physical pain, we don’t like to see our fellow humans in pain. When we see someone that is in the middle of facing a “negative” emotion, the reaction for most of us is to want to make it better…to fix it. So we offer condolence, try and make them laugh, tell them positive things going on. Their discomfort makes us equally as uncomfortable.

There is also a physiological correlation between those types of emotions that I touched on in an article about talking to your body. Studies have shown that certain emotions have a negative impact on the immune system, heal rates, and organ function. With all of that, the evidence seems to point in favor of avoiding or trying to get rid of those emotions as quickly as possible, right? Well…not really.

To Feel Is To Be Human

All emotions are equally important. ALL OF THEM. Whatever you feel, however you react to a situation…is okay. Let me repeat that. Whatever emotions you experience is okay and normal, even if you don’t like them .

To be human, is to experience the whole spectrum, not just the pleasant things in life. We can’t sever or bottle things just because they don’t feel nice at the moment and expect to function at our best. Whether we like it or not, ignoring an uncomfortable emotion carries with it the same risk as if we choose to ignore an ailment that is purely physical such as a sprained ankle. Pretending it’s not there doesn’t remove it, it just increases the potential for the damage to become worse. What’s even more dangerous about when this is done with emotions, is that we can lie to ourselves convincingly enough that because we don’t have a direct correlation, such as a sprained ankle would with increased pain, to let us be acutely aware of this escalated damage. Symptoms that can easily be written off such as decreased appetite, restless sleep, moodiness, headaches, fatigue, stomach upset, forgetfulness..can all be attributed to other aspects of our life rather than to emotional causes. It must be something we ate the day before, or an allergy because if it’s “bad” emotions we might actually have to do something about them.

This doesn’t mean I’m encouraging you to carve out a place and wallow in them. Nor do we have to make a banner out of our less pleasant emotions and wave it around wherever we go. But we shouldn’t try and pretend they don’t exist or try and convince others to push them out at all costs. You’re emotions are a reaction to what’s going on around you from your brain. Consider it the same as when your nerves send an excited chill at a lover’s touch or pain from touching a fire. In that sense, acknowledging sadness is just as important of an emotional message as joy.

So What SHOULD We Do?

With the flood of suggestions about how to remove them or hide them, what should we really do when those “bad” emotions show up?

Well….

Accept them.

It sounds simple, but in today’s age that’s a really difficult thing to do. So many of us are so used to shoving them in a dark place inside ourselves that we are unaccustomed to dealing with them in healthy ways. We explode at the source of those less than pleasant emotions or those we care for because they’re closest to us. We indulge in coping mechanisms such as video games so we can drown out the painful reminder of whatever is crushing us at the moment.

But it doesn’t have to be that way.

Letting yourself be angry or sad or frustrated and acknowledging to yourself that it’s okay to feel this way is SO VERY IMPORTANT! Until we do these things, all the positive thinking in the world isn’t going to help, especially when you’re facing chronic illness. EDS folks, we deal with constant pain and limitations because of how our body is built. If a professional athlete is allowed to feel upset and frustrated as they’re healing from an acute illness, we are allowed to be frustrated and upset at our life circumstances! You are allowed to cry. You are allowed to scream. You are allowed.

Now, like I mentioned above, you don’t have to live there. The idea behind this is that you need to allow, and then show yourself compassion about it. This can be as simple as holding your hands over where the emotion feels the strongest within your body. Does it tie your stomach in knots or make your heart ache? Hold your hands there. Hug yourself. Cuddle a stuffed animal there. Allow yourself to embrace that crappy feeling and comfort where your body is feeling it. It can sound a bit on the silly side, and may even feel that way doing it, but it does actually stimulate our nerves and can have a relaxing effect.

Then, let those emotions work FOR you instead of against you. I will use myself as an example. With all those things I listed in the beginning of this article, I am angry and disappointed. It started as anger towards everything and disappointment in myself if I’m to be honest. I felt like everything I did wasn’t helping and obviously I had to be doing something wrong. Maybe life just hated me that much. Maybe it’s not even worth trying anymore to improve my ankles because I’ve been facing this since last October and having so many problems that shouldn’t have happened. I tried to hide it at work, and from those I loved, because I didn’t want to be a burden. One day it got so bad, I completely broke down. I cried and hugged myself while I sobbed in the shower until I used up all the hot water about my circumstances. All of it came out. The fact I will never shoot archery again. I will never run again. I have to regulate how often I can do my artwork. I can’t do what I used to at work anymore. I will never get better. It felt like the internal pain was so overwhelming that it would never stop. It was embarrassing and I hated it.

But the tears did stop. And you know what? I felt better for finally releasing all of those things that I was trying so hard to pretend didn’t exist. I got angry at the depression and at the EDS for making me feel helpless. I got angry that I allowed myself to do this TO MYSELF! What did I think I was accomplishing? Hell if I’m going to let this stop me from being creative, or living my life. Yes, all of that sucks. A lot. More than I know how to properly express. But that doesn’t stop me from trying to figure out a way to accomplish new things, or inventing ways around my limitations to do what I’d like at least a little bit. I stopped turning those emotions inward, and used them as motivation to move forward.

It doesn’t stop things from being hard. The idea isn’t to stop them anyway. The idea is to let them do their job so we can move past them. Using them as signals of something we need to change either in ourselves or our surroundings to improve our quality of life. As an alert to turn inward and see where the core of those feelings start from and learn to grow as people from them. We can’t do that when they’re stuffed into a box deep inside the parts of our mind we don’t want to look. We can only do that when we dust off that box, and take it out into the light and look at ourselves with the compassion we all deserve.

Wishing you all, all the love.

What Is Pain

We all feel pain, but…why? Simply put, pain is the message our body delivers to get us to change a behavior and avoid further damage. Our bodies feel an actual or potential threat, and send a message along our nerves that gives us unpleasant sensations that basically translate to “STOP DOING THE THING!”. As a general rule, the higher the pain, the more damage you’re incurring on your person. If you want detailed information on the biology of processing pain, check out this article on the NIH.

This gets complicated with chronic conditions that have a constant pain level. One, sometimes that part where it’s registering potential threat…is a bit paranoid. It sends us messages of intense pain when there is nothing actually harmful going on in our bodies. They scream if anything but the softest fabric is touching the skin or the wind is gently blowing. The second complication is that if you have things that ARE harmful on a constant level, your nerves have the potential to whimper like an abused housewife instead of scream every time something terrible is going on. That’s far from a kind analogy, but it is illustrative of how nerves can respond and can be helpful if trying to understand why if you feel better, it doesn’t always mean everything is improving. They give up trying to work towards fixing and take a “whatever, nothing is going to ever change anyway because it’s hopeless” attitude.

On a Scale of 1-10…

When doctors ask you to rate your pain on a scale from one to ten, they’re trying to assess the level of danger you’re in. If you are at the point your nerves only whimper OR they’re on the paranoid side, this makes using pain as a diagnostic tool difficult. For an example, the first time I pulled a rib out, it was excruciating. I had a hard time breathing, sitting, lying down, standing…you get the idea. The only way I was pain free was contorting myself in an odd position with one arm twisted above my head until it went back in. That was several years ago. When one goes out now? It’s annoying. I still have discomfort, and damage is still being done to surrounding soft tissue. My body just doesn’t register the intense pain anymore. It’s given up trying to yell that something is desperately wrong. So when I go to my physician and he asks how my pain is today, if I’m honest, I’d rate it probably at a 3. How it should be rated, however, is closer to a 7 or an 8.

So what do I tell him? Do I tell him how I actually feel or how I know I should be feeling?

Though it takes up more talk time, I normally decide to do both. I’ll explain, as quick as I can, that “I’ve got a skewed pain spectrum from chronic pain and that I walked to work on a dislocated hip so please keep that in mind. So I’d rate it on a personal scale of a 3 but it should probably be more accurately a 7?” while using a tone that has a questioning inflection to let them know in subtle ways that I’ve really no clue what I should be saying but I’m trying to be helpful.

On A More Personal Level

Though this presents its own complications talking with physicians, the larger hurdle for me is it plays a huge anxiety role for whether I have a valid complaint worth bringing up to the doctor or not in the first place.

Another contributor recently wrote a wonderful post about being told It’s All In Your Head. It’s a very real problem many of us face. Whether our brains are freaking out and there’s no discernible cause or we’re in so much pain all the time others (including some physicians) don’t believe we can talk calmly AND be experiencing that level of constant pain. I’ve been told in the past that I couldn’t possibly be experiencing a migraine because when THEY have a migraine THEY can’t function. A week later I was hospitalized as my muscles decided to give up and I couldn’t lift myself out of bed. Diagnosis? Status Migraines. How was I still functioning up to that point? Barely. But I had things to do so I pushed.

When you’ve got that level of stubborn ambition, to perform daily tasks while experiencing pain that would normally immobilize the “average” person…how do you decide when its an emergency? I’ve torn ligaments, had pains that my OBGYN related to labor pains when struggling with undiagnosed severe case of simple hyperplasia, dislocated and subluxed joints, status migraines, severe panic attacks that caused chest pains, been stung by a Man O’War, nerve pain from a swollen trigeminal nerve, and that’s just off the top of my head in this moment. Every time I thought to myself “I can still work through this, it’s not bad enough to bother my doctor…right? Severe issues that required medical attention and I was there wondering if I should BOTHER MY DOCTOR not because my doctor is mean and abrasive, but because I couldn’t decide if it was an actual problem or just something mildly annoying. My interpretation of pain is so skewed, my body is no longer sending proportional messages about the level of danger I’m in. It’s like if you accidentally severed a finger and your brain can’t figure out if it’s really severed or not. It’s pretty screwed up if you think about it. On more than one occasion I’ve been in the middle of explaining an issue to a new specialist only to suddenly realize they’re looking at me with an expression that is somehow a mixture of horror, sympathy, and disbelief. It always seems to follow with “and why haven’t you come to see someone before now?”. Well, because to me it didn’t feel that bad. Don’t know what else to tell you.

It screws with your perception of reality just a little bit.

What Can You Do About It

I wrote something about Becoming Your Own Doctor recently, and that aspect has something to do with it. The more that you can learn about your condition, the better aware you are of things to be a bit hypersensitive over. It also is important to discuss things and make your perception of pain known to your physicians. Only when you’re all on the same page, can everyone be making the best decisions possible in regards to your health.

Learn to be more comfortable with communicating with your medical team. I’ve learned the hard way that it’s much better to be a bit on the side of oversharing than to assume what I’m experiencing is harmless. If you need to, to ease any awkward feelings about bringing it up, pretext it with something like, “I’ve no clue if this is relevant, but I figured better to just inform you…”.

Discuss using different variables to your pain scale with your medical team. Let them know what else you’ve considered at that number or what you’ve considered a 10 to put it into perspective. Use descriptive terms and analogies or explain how it impacts your mental state.

Remember it is all about taking the best care of yourself as possible. If you happen to have a condition that alters your perception of pain, it’s best to acknowledge and work with it in a way that is as productive as possible.

What’s The Core Issue?

A connective tissue disorder like hEDS means that our body has the wrong “recipe” for collagen. Collagen is the MAIN structural protein in your skin, ligaments, tendons, and many other areas in your body. Think of it this way; do you know those plastic rings on milk under the cap? Those are your ligaments. Strong, solid, and just flexible enough to allow for some movement. Now, do you know that thick, blue rubber band on vegetables like broccoli? Those are our ligaments. Thin, not as solid, allow for WAY too much movement, and a lot easier to damage with a lot less effort.

This is what causes our joints to easily hyperextend past the normal range of motion. While it doesn’t generally hurt to do it, it does still cause continual strain on those parts, just like continually stretching a rubber band to its limit causes strain. This also is what allows our joints to slip out of joint partially (sublaxation) or completely without needing a lot of force for it to happen as in a person with normal collagen. You can do a simple test of your own hypermobility by performing the tests on the Beighton Scale as the image shows below. Our joints allow for these movements easily, so please DO NOT try and force your joints to do these and if you CAN perform these easily…consider an appointment with your doctor to discuss your hypermobility.

How Does That Affect Your Exercise?

Syndromes like hEDS are a sliding scale and everyone has their problem areas, so it is a bit different for each of us. That being said, it affects our ability to exercise because we have to be as hyper-aware as we are hypermobile. Think back to the rubber band vs plastic ring analogy. Let’s take that and go further with it and use what seems to be everyone’s favorite suggestion…yoga. A lot of yoga deals with stretching, holding poses, and movement. It’s fantastic for so many reasons! It’s touted most for increasing range of motion and stretching out problem areas, but let’s look at that.

While there are many different types of yoga, remember back that our “rubber bands” already stretch and can tear easily. The “plastic rings” of the healthy connective tissue is what keeps the joints of a healthy person from slipping away from where they’re supposed to be and increasing mobility in a healthy and productive way while practicing yoga. This is REALLY IMPORTANT, the “rubber bands” we have don’t do this. Simple stretching can cause the muscles to move the joint away from where it is supposed to be, causing intense pain as well as damage to the surrounding tissue. This has less to do with “doing it properly” and more to do with “we’re not built right”. To give a more direct example, look at the simple stretch in the image below. Now, imagine that performing that stretch caused a rib to slip out of joint as well as the hip that is on the bent leg to slip and maybe even that knee when you try to straighten that bent leg again. And we’re just talking about easy stretching, not even into cardio yet!

So What CAN You Do?

It sounds pretty intimidating if you really think about it, but its not the end! First off, know your body and know your limitations. As stated above, syndromes such as these are a sliding scale so you have to be aware of your own problem areas. Second, discuss your options with a medical professional that is familiar with your situation if you can. I’ve had two incredible physical therapists over the years that have helped increase the strength of the tiny muscles surrounding the joint structures to compensate for my lax ligaments and eventually step up to increased ability to exercise! Third, try to learn to adjust and be excited for small victories and prepare for your progress to be slow going. Remember…you’re a zebra so you can’t expect to have progress the same way as a horse.

I know, that doesn’t go into any suggestions of what to do. That’s because there’s no one-size-fits-all suggestion. However, the important thing to take away is not WHAT you can do but to do what you CAN. Maybe this is only doing tiny little exercises that seem like you’re hardly doing anything for a year. Maybe this is swimming. Maybe this is walking. Maybe this is a stationary bike. Whatever you can do without causing further strain and risking injury to yourself? Be proud of yourself for putting forth the effort, no matter how small it seems or how slow the progress! Want to know what my “exercise” looks like for my legs? Something like this:

Sounds Like You’re Just Living in Fear and Making Excuses

Few things get me angrier than hearing a phrase like this. It an interaction where a phrase similar to this was uttered that motivated me to write this post if I’m honest with you. Constant suggestions of yoga and a myriad of other exercises that are considered “low impact” like bikes, ellipticals, light weights, and walking may seem like you’re encouraging. Most of the time, we even understand that you’re trying to help. But…sometimes we dislocate a hip by rolling out of bed or sublux a rib by taking a deep breath.

It also implies that all fear is negative an unproductive. You don’t have to be so afraid you’re trying to wrap yourself up in bubble wrap or never do anything enjoyable, but a healthy level of apprehension to your ability to perform physical activities will help you to stay more mobile for longer both in the short term and the long term of your condition.

Any physical activity comes with risk, even if you’re healthy. The difference with us zebras is that if we sprain an ankle on an elliptical…we’re not down for a week…we’re down for a lot longer and have a greater chance of surgery (which we shouldn’t be really subjecting ourselves to as I’ve said in an earlier post) than a person without a collagen disorder. Who in their right mind wouldn’t be a little bit more concerned about what they’re doing when it’s the difference between temporary pain and a high risk of permanent injury?

There is also a bit of victim blaming laced in statements such as that. Trust me when I say I would love nothing more than to go back to any of the activities I used to enjoy. However, I know even a low poundage compound bow poses incredible risk to the integrity of my shoulder joint. I could either be reckless and stubborn and try it anyway, or learn to accept the new limitations of my condition and make the effort to strengthen what I can as much as I can to ensure I have the use of my arm for as long as I can. Insinuating that not going and trying again is living in fear, is saying that I’m being weak-minded instead of working towards my best interest.

Statements such as these also insinuate that you are more aware about a person’s medical condition than they or their medical professionals are. I’m not saying that everyone is as hyper-aware as I am or that every doctor suggestion is to be taken without question. What I am saying is that if a medical team says “don’t do this thing for these reasons” and they’re known to be true or that if a person knows their hips easily dislocate…no amount of hopeful thinking is going to make it safe just because it’s low impact for a healthy person with normal collagen.

It is more important to try to live as best we can as healthy zebras instead of trying our hardest to pretend that we can be horses.

My parents wanted me to come and visit and spend more time with them in San Francisco, which was an hour and a half ride by public transit (I don’t drive) each way, plus whatever time I spent with them. I often begged off due to fatigue, or due to pneumonia-like symptoms. See, I say “I feel like I have pneumonia,” which means that I feel many of the same symptoms of having pneumonia without having been to the doctor to get diagnosed. Having had as many cases as I’ve had, I can usually tell when it’s severe enough to warrant seeing the doctor, especially considering that seeing the doctor meant I had to work a half-day instead of a full day.

One time, when I was over at my parents’, they had left their email open. I made the mistake of reading it, and they declared that they believed me a hypochondriac in it. This was before my diagnosis of fibro, but while I was definitely expressing symptoms of it. Unfortunately, many of those symptoms resembled my mom’s, and she has MS. So they perceived me as wanting attention by pretending to express the same symptoms she had. This was not the case.

The world believes that what’s wrong with me is all in my head. My physician, blessedly, is not one of them. But even my first application for SSI included the words “it’s all in his head.” I even had a doctor in the ER tell me that I “had a lot of fake problems.”

I’m here to tell you an important message. It actually is all in my head, in that fibro is overactive nerves that are messing you up for no good reason. There’s no way to see it. There’s no way to prove it. But that doesn’t, in ANY WAY, make it any less real or valid. I am still in pain. I still have fatigue, and lose my apetite, and have hot spots where it is agony to be touched. I still find it exhausting to spend time around people, or loud noises, or a lot of strong smells. I still have the taste of food altered by my illness, and have floaters in my vision that sometimes render me unable to see much of anything, and get fairly awful tinnitus periodically, and sometimes I sleep for days at a time basically, getting up to eat and go to the bathroom and nothing else. I still forget words and use the wrong words for common concepts.

My illness is real. It is invisible. But it is real. And it doesn’t matter what other people think of it, whether other people believe me or not. It’s real. Medicines designed to treat these illnesses work and help to alleviate my symptoms. Medicines designed to treat some of the symptoms (like pain medicine, which has a history of not being effective for most fibro-related pain, and is only for breakthrough pain) are not effective, as expected. Altering my diet some, attempting to do more stretching and exercises that are shown to be effective help alleviate my symptoms. My illness is real.

I never told my parents that I read that they called me a hypochondriac. It wouldn’t be helpful and would just lead to us fighting about it. But I can, in all honesty, safely say that my illness is real.

It’s a tough fight to go through, having an invisible illness and facing a world that doesn’t believe in it. I am not the kind of person for whom support groups are effective. I use mantras to remind myself that I have this illness, but that it does not define me. That my limitations are real, but that I can continue to live a fulfilling life nonetheless. I remind myself that the opinions of others do not define me either, and that it doesn’t matter what anyone else says, my illness /is real/. Never let someone else tell you what you’re experiencing when it comes to this sort of thing. It’s hard, but you have to stick to your guns and know that it’s your life, your experience, and it’s real.

And anyone who tries to deny it? Examine whether they are necessary in your life or not. Give them a good, hard look. Because chances are? They aren’t. And you will be much better off without them.

Always remember: Just because it’s in your head doesn’t make it fake or untrue. It is real.

I just had my second major surgery. It went well and though it was only a week ago, I can tell it’s healing pretty good thus far. The surgery prep was less than phenomenal, though it wasn’t the fault of a bad nursing staff. They dug around in various spots on my arms eight times before calling someone from the midline team.

I’ll state it again, the staff was fantastic. They were all very skilled nurses, and one was even my anesthesiologist that is familiar with EDS. The problem was completely with my veins that would blow or collapse on them. I can’t, and won’t, blame any of them because of my zebra veins causing problems. They were all kind, patient with my anxiety and slowly rising stress, and as gentle as trying to get the necessary IV allowed them to be. They even gave me a nice Ativan to help me calm down half way through the attempts and gave me warm blankets for my arms that were icy because of the Raynauds. Despite that, I will admit that I was struggling to hold back tears after one of the last attempts on my wrists. My surgeon happened to meander by at that time and asked how I was holding up. I looked at the anesthesiologist and back to my surgeon, and asked the both of them…

Can I Please, PLEASE Stop Being A Zebra Now?

My anesthesiologist responded with much appreciated humor and my surgeon responded with sincerity and empathy that, while I adore him, was unexpected. Though I was stressed so I don’t remember exactly, but it was something along the lines that while I can’t just stop being a zebra, how amazingly strong I must be to be able to handle being a zebra in the first place…only…I promise he was much more eloquent than that.

My pre-op nurses when I apologized for being a nervous wreck THANKED ME for my patience and cooperation and strength with this. I was told similar from my Primary Care Doctor, my Gynecologist, even my Acupuncturist. Not to mention friends that seem to never miss an opportunity to tell me. Even strangers that are visitors to where I work…”Wow, you’ve got an amazing attitude! You’re so strong!”

…But I Don’t Feel Strong

Especially not lying in that hospital bed, in a paper dress, arms with bumps from blown veins wrapped in warm towels, failing to hold back tears because I’m so broken I can’t even get an IV. Knowing I’d be going home to be confined to needing help with something as basic as taking a shower for about a month at least. Knowing I can’t be trusted to use a knee scooter the 200 yards to my work without supervision for at least a month. Yep, there’s the broken girl crying in the pre-op room.

I’m in pain all the time, and sometimes I break down because I just am completely overwhelmed with the fact I rarely have a day where something doesn’t hurt. I break down because I’ve been mobility impaired in some significant way with my ankles for over a year now. I break down because I’ve been breaking down more often than what I consider normal. Here I am, on the verge of breaking down in the hospital before surgery and they’re telling me how strong I am? And every time, I immediately think there’s something wrong with each person that sees me as having strength through any of this.

But Strength Isn’t About Never Breaking

This is something that I’ve still not learned well and will have to work on accepting. But strength in this situation is about choosing to push forward. I could have very well stopped after the fourth IV attempt, or even the second, and walked out. I could say “fuck it” to sticking to a strict diet that keeps me from going out to most places or eating without concern when friends cook. I could say I’m done seeing doctors for a while because it causes too much pain, and grief, and hopelessness.

Though I personally don’t see it as a choice, I persevere through each challenge the best I can. That after each time I break, I try and see what I can do next. If I stop being able to sit at my desk and paint, I wonder about ways to make it safe for me to do it in bed or on the couch. I am always on the look out for new things to try with my diet that will be replacements for foods I desperately miss. I’m even learning to let trusted friends know when I am truly not alright and should be checked in on occasionally. And though I still don’t see this strength most days, I have plenty that will remind me that while it feels inconsequential while elbow deep it in, the sheer fact of pushing forward in the face of adversity is where strength lies.

You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I lived through this horror. ~Eleanor Roosevelt

I’m not talking about asking your brother to pass the salt at dinner or getting the smart kid that sits next to you in class to “help” you with your essay, though I’m sure both those examples can come with their share of troubles. I’m talking about the kind of help that people ask after a tragedy, “Why didn’t they ask for help? Why didn’t they come talk to me?”

For those first time reading, I have a collection of health issues that make being self-sufficient in a safe and healthy manner just a little bit problematic. Digestion, depression/anxiety, falling over, migraines, subluxing or dislocating joints, breathing issues, brain fog, chronic fatigue, and that’s just what I can think of off the top of my head. Despite this, until recently, I had done my best to push through any pain or other illness no matter the cost to accomplish the task in front of me with as little help as possible.

But Isn’t That a Good Thing?

Well…yes and no. It is a good thing to push one’s self to function as best as one can. It is not good, however, to walk on a broken leg just to prove your strong enough to handle doing it. While that can seem an obvious in that example, it can be harder to understand where the line between the two is with situations that have less of a stark contrast to them. This seems to be especially true with chronic illness. We have to deal with so many things on a constant basis, sorting those from new issues or pushing to “the point of no recovery” isn’t as simple and clean as acute issues can be.

Okay…But Why Does That Make It Hard to Ask For Help?

I can’t speak for the stories of others, but I learned from a young age that the only person you could rely on was yourself. If I would sublux my hip, not only was nobody helping me, but nobody believed the small child was experiencing such a level of significant pain. If I had breathing trouble, because it was diagnosed as “not asthma” I was told to push past it. Or if I did receive help, annoyance seemed to quickly creep into the helper when my problem didn’t get resolved. Parents, doctors, family, teachers, and well-meaning friends. The story seemed to remain the same. That’s not to garner sympathy, but rather to simply paint a picture for better understanding.

Nobody was going to come and fix me. Nobody was going to help me more than a few times. I only have me.

At least that’s how I felt.

Instead of considering what was best for my health, I had to focus my attention of finding ways around my various issues to do what was needed. Whether I should or should not be doing such task wasn’t even a question. I put ridiculously high expectations on myself to control everything that I could. Hide the emotions so nobody notices I’ve got anxiety. Smile through the pain so nobody is inconvenienced. Deal with it all internally because it’s not worth trying to trust anyone on the outside.

That Never Stopped Me From Trying to Help Others

Which may seem a bit backwards. However, though I wasn’t ready to let my walls down, I wanted to let others know they weren’t alone. I’d give the support to others that I wish I had when I was growing up, whether young or old. From the heartache of a lost pet to a less than desired medical diagnosis. I was happy to know I was helping someone. Hell, that’s part of the reason I started this page, to hopefully reach some people and let them know they weren’t alone or help those trying to assist others understand a bit better of what not to do.

Yet there I was, keeping myself on my own little personal island of self. In my own little corner, in my own little chair. While pulling people off their islands with love and compassion.

What Made Me Reconsider the Island of Self

Three events happened in rapid succession, which caused my paradigm to make a hard turn.

Someone I’ve grown to love and trust recently caught me in the middle of a pretty bad break down. I was utterly beside myself with the hEDS diagnosis and knowing it means I’ll slowly degrade, and who wants to deal with someone who will probably be in a wheelchair before they should be and need help doing normal tasks. It’s not fair to ask someone to deal with a person like that as a partner. He made me look at him, “No, it’s not fair. But did you ask for this?” I shook my head. “So, it’s not fair to you either. And that means it’s people like me and [your partner] that are here to help. I think it makes it a little more fair, don’t you?”

It’s not a flawless argument by any means, but I really had to stop.

A lovely new friend recently said if I needed any help with surgery recovery to please let her know. But I didn’t want to bother her, which is how I really felt it would be in my mind. Until there was one day when I truly needed help home from work and all of my normal assists were gone. When I asked her, the interaction was pleasant enough, but it was what she said when she was escorting me home that shook the paradigm foundation again. “I’m so glad you asked me to help! I’ve felt like a terrible friend so I’m happy to have a way to help you!”

I had to catch myself from physically stopping in my tracks with how hard that hit.

Then earlier today, talking with another zebra friend. We were talking about this very concept and she shared what someone told her. “You know that good feeling you get from helping someone else? When you give that part of yourself to make someone else happy? Who are you to rob someone of that feeling by refusing to let people help you?”

And even though I could tell where she was going as the story was being told, it was still a punch to the gut.

We All Need Help and We All Need Love

Sure, it doesn’t take away from those out there that kick us when we’re down. And it certainly isn’t an easy transition to go from “I can do everything myself” to “Can you help me do this everyday task?”, I certainly am not doing it smoothly. There are emotional walls built of reinforced concrete that have been there since I was young and it’s uncomfortable taking them down to allow someone to get close.

We have to remember that we’re worth the same compassion we put out. There is no need to suffer when there are people that love and care that WANT to help. Whether it’s help with mobility or just being in the company of a friend on a bad depression day…there is nothing wrong with asking for that. And there is certainly nothing wrong with allowing someone to give you that either.

Patience… Is not my strong suit.

I had these procedures done in mid November. The short version is they replaced a ligament with a synthetic one and stuffed a bullet shaped implant into my ankle to keep it from falling out when I stood. I’ll elaborate later when I’m confined to a bed in recovery and need something to do.

It’s now mid October. The swelling is down, stitches have mostly dissolved. Last post op appointment the surgeon said I was “Healing like a teenager” and to start walking on it.

Okay

So… He didn’t exactly say start walking on it.

I was supposed to start walking on it GRADUALLY and SLOWLY increase the amount every week. If anyone reading this thinks I followed that order, my future posts are going to be a lot of fun for you.

To elaborate, I’ve not been properly walking since this time last year. I pulled a ligament in my right ankle and it never healed enough to reliably support my weight. Sometimes it would just randomly give up and I’d have to try not to fall over. Walking boots, constant ace bandage, walking stick, cane, support boots in the middle of summer. Can you blame me for wanting to be just that little bit independent again?

I did start out slow. Walking just to the bathroom once or twice a day. That quickly escalated to walking home from work and through the house at least once an evening. Granted, work is only 150 yards away. But I don’t think going from no weight on it to what adds up to a couple hundred yards a day… Is what he meant by gradual.

So today I’m paying for it. Massaging it is fine. No extra bruising or discolorations. But it feels like I’ve got a bruise on the inside on my ankle bones. Which…I should probably expect being there’s an implant in there that they need to adapt to.

But why do it? Why ignore the doctor’s orders?

Simple. Frustration. It sounds silly. I know. And it’s a terrible reason. Trust me… I am fully aware. But I’m a woman in her mid thirties that needs help carrying food from one room to another. I need help showering. My other half has to pick out clothes because I can’t get to my closets with the walker or knee scooter I have to currently rely on. I can’t even make, let alone get my own cup of morning coffee. I have to be walked home while I’m recovering in case I fall. I haven’t been on a proper walk in AGES.

Starting to see why I could want to break free ASAP?

But the pain today tells me that if I don’t regain my patience…I won’t be able to enjoy that freedom again. That I need to slow down and let those that care for me continue to help me. It’s either that… Or face that I’m risking needing a more permanent level of care.

That’s a difficult thing to face at times.