Apparently I’m feeling chatty today, so I think, I’ll chat about something I very rarely talk about even with people that I love and care about; how sick I am. Now unfortunately I’m not talking about a sick sense of humor, I quite honestly mean sick, the kind of sick with no treatment, no magic pill, just figuring out how to live on a day to day basis without it interfering.
So, here are a few of the things I’ll talk about today; HHT, EDS, Fibromyalgia and the whole subcategories that are the accompanying symptoms. Now as we go on here, please keep in mind that these are just My symptoms, there are others of course, as with anything in the world, but if I don’t know about something I’m not going to pretend that I do.
First let us start with HHT ( hereditary hemorrhagic telangiectasia) or Osler Weber Rendu syndrome, if that name is easier to say. The main thing about HHT is that it causes vascular dysplasia, meaning the blood vessels in my body have this fun tendency to break, usually causing me to have wonderful nose bleeds. Why you ask? Because the blood vessels sit very close to the surface in our noses and are very tender. Super gross, I know, but here is a few examples of how annoying it can be: Imagine happily eating and watching a movie, everything feels normal until you realize that your nose started bleeding into your noodles because you bent over the bowl. …. Yup, that’s a thing that happens. Or being asleep and having dreams that you’re drowning- and then waking up in a state with dried blood down your face (sometimes if you’re having a really good night it’s down your chest), on the pillow and blanks and… in your hair. Yup, that’s a thing also.
But sometimes, when the vessels break up higher in your nose, it doesn’t bleed out…. it bleeds down… Think about that for a minute… Figure it out? Well, when this situation happens, and believe me it happens a lot, that means you’re bleeding down the back of your throat and into your stomach. If you have ever opened a biology book and read a page or two, you’ll know that your body can’t process blood like food or water. When this happens, most often than not, you’ll puke black. With no oxygen in the blood, and having it be sitting for days at a time, it basically “dies” causing it to turn into the scene from Jennifer’s Body, and that is not a lot of fun. Having that fun image in your head now, let’s move on to something else.
The topic of EDS. Ehlers-Danlos syndrome is a connective tissue disorder, it effects skin, joints, collagen, and -oh hey look- blood vessels! Let’s start with some easy, not scary things; I’m double jointed in my knees, shoulders, right elbow and most of my phalanges. I’m ridiculously flexible which I do need to be careful about in all honesty. A lot of my skin is very tender and stretchy, very cool and slightly yucky. Now seeing as I have two different syndromes that effect the same thing, it gets interesting with the blood vessels here. I bruise very easily, and I do mean Very easily. We’re not talking little baby bruises, we’re talking bruises that are the size of softballs some days.
I’m going to dig into a few of what I consider “side effects” of EDS. Mostly things that are also very much go hand in hand with it.
~While I am very bendy, it also causes me a decent amount of pain because of the joint deterioration, sucks right?
~Skin that is so tender but extremely soft! Most people refer to it as ‘velvet skin’, and I don’t even have to try! So I guess that’s a happy thing.
~ The foggy brain, the fatigue, and don’t even get me started on the G.I. problems.
~Scratching and leaving huge welts where your nails were.
~Scoliosis! Talk about being bendy but having it hurt.
~Autonomic Dysfunction. That should be a topic all of its own.
Unless someone has a burning question about AD, I’m just gonna leave it at that for the EDS right now and move on to…
Unless you’ve been living under a rock, most people have a general idea of what that is. Wide spread pain, deep pain, shooting pain, stabbing pain, pain you didn’t even know you could feel. Restless legs, muscle spasms, back pain, balance problems. Good lord, the tinnitus- which is ringing in your ears, and the headaches. I’m sure there are other things that I’m forgetting- memory issues to!- but for now that’ll do.
The thing about having these problems, is that a ton of my symptoms over lap, in case you didn’t pick up on that. So trying to get an answer out of anyone about what was wrong with me was really difficult for many years.
There is no cure, for any of it. I know people who have died because of all of these things, my moms friend Jim being one of them. It’s not something to joke around with, even though I do a lot. Joking is my way of coping with this. These are real problems that no one can fix. If you’re wondering how a person can live with it, it’s simple; You get use to it. But again I’ll say, please remember that these are My symptoms, the things I live with everyday and nothing more.
Having people stare and yell at me for being in public with my headphones and music, because it’s the only thing that can dull the ringing in my head and make me feel sane. Having friendships and a relationship or two be ruined because people don’t understand that no matter how hard I try, I can’t fake away the pain I feel everyday. Telling me to “Think positive, drink more water, get more vitamins, do yoga, carry around this rock” or whatever fad is suppose to make everything better, is Not going to make it go away. I wish it could though, I really do. There’s another whole sub-thought category to go along here, but I think I’ve covered enough for now.
Having said my peace,