It seems as though Western medicine has started to catch on to the idea of treating the whole person, and trying to include mental and emotional health into their scope of practice. I think it's a huge step in the right direction, and hopefully it will help change the way patients are treated.
While it is no secret that I have gone the route of natural medicine, and think it's the greatest thing I have done for myself, it may not be so known as to why I made the choice. 13 years ago when I started on the long road of EDS, it began with a dislocating shoulder and all over joint pain. I was referred to two surgeons, put on pain medications and told that it was no big deal. Over the years as more joints started to dislocate, pain become less manageable I ended up seeing more and more doctors. I was told that there was nothing that could be done, that I was making it all up, looking for attention, doing it to myself, blowing it out of proportion, and that I just had to learn to live with it. Nobody could explain why all the treatments I tried were failing, other than that I was sabotaging them and wasting people's time. Awesome, just what I needed.
This lead to my eventual miss-trust in pretty much everyone who practiced Western medicine, and depression. I was thrown on a few different low-grade anti-depressants and I got some anxiety meds for emergencies. The girl who was once happy-go-lucky had turned into a ghost walking around in a shell. If I could use one word to describe that time in life, it would be: numb. As a defense mechanism, I learned to turn off every emotion and not attach myself to anything. Doing that would mean I wouldn't loose anything. If I didn't feel joy, then I wouldn't need to feel sorrow. If I didn't feel optimistic, then I wouldn't feel let down either. I thought for me, that it worked. I could walk through life in a fog, not feeling anything, and eventually things would get sorted. I just needed to wait it out. I was so wrong.
It took a while, and some very honest friends telling me that no, I wasn't okay and I to make some changes. The first thing I did was find a naturalpath. My consult was 1.5 hours, we covered EVERYTHING and the thought of that baffled me. Why hadn't this been done long ago, when the whole EDS mess started? And, why was she the first person who really listened to me? I left her office feeling optimistic, and far less numb. That day, I decided to scrap Western medicine and put a bit of faith into something else. Over the years, holistic medicine has also helped me learn to think differently, which lead me to living differently.
So we'll go back a little bit to where I started. The reason I'm bringing this up, is that all of the doctors and most of the nursing staff at the hospital asked me about how I manage to keep positive. How could I be excited to get a gj-tube put in? Surely, it's not possible for me to be okay with all that's happened. Haha, if they only knew some of it. I had a neurologist consult this week to get the suspected dysautonomia sorted. He kept asking about what life was like before EDS got bad, and how I've handled it over the years. This meant that wounds that just healed, got opened. My psychologist thinks that I have trauma issues, as a result of dealing with all the negativity thrown my way from doctors over the years, and needing to fight for everything.
I won't lie, loosing the ability to do everything you live for is hard. Going to sleep and waking up in pain everyday is hard. Giving up some amazing opportunities, and even girls nights is hard. Feeling like you've been left with nothing is hard. Gaining things that will make life "easier" is hard. I don't think anyone as a child envisioned braces, wheel-chairs, endless doctors appointments and extra tubes sticking out of their bodies when they grew up. Yet, here we are, with varying degrees of disability and regression; with lives that somehow need living. I will be the first to say that going through the grief process, with a condition like this never really ends. It comes in waves, depending on what life throws at us. In the last year I've managed to get over the anger part, and am pretty much through the sadness bit I think. I have my days when I'm so tired of fighting all the time, just to be able to live. I pay insane amounts of money for treatments (which I love and think are totally worth it) to be able to work, have less pain, and possibly slow things down. Those are the days where I stop caring about everything and completely shut down. I isolate myself and just process, it's what I need to do.
Being okay takes a lot of work in being really creative, resourceful, brave,stubborn,patient and having confidence that all will get figured it out. I find ways to make whatever has been thrown at me, work. I've learned not to have any expectations, but to go along for the ride and enjoy it as much as possible. It can mean jumping in with both feet, or taking a step back to think about if something feels right. That's the other thing that has really helped. If it doesn't feel right, then I won't do it but, I will fight for what feels right for me and so should everyone else. It means slowing down, and not taking anything for granted. As a rule for myself, I have to find at least three good things about my day before I go to sleep. There are always good things in each day, no matter how bad the day was. For me, it also means having faith that the universe has my back and that I'll always somehow make it through to the other side even if I have no clue what's in store. Who does anyway?
I have lost pretty much everything, but have gained in so many other ways, that I wouldn't trade my experiences for the world. Those are the things that help shape and push us to go further than we ever could imagine. Sure, the journey is hard and at times just plain horrible, but we can always look back with pride at what we overcame and accomplished. For those of us who are young and were once ready to take on the world, being thrown into the land of EDS has probably knocked our entire lives off kilter. We were forced to grow up and mature quickly. A lot of us facing, or coming to terms with our own mortality. When that happens, everything seems to take on a new definition, with a deeper meaning. We measure life in the little things that make life wonderful, rather than what is quantifiable.
I came to realize, that these are the same lessons that takes almost everyone a lifetime to learn. In a way, I'm glad to have learned these things now, so I can live life to the fullest and not sweat the small stuff. It has essentially saved me a lot of unnecessary pain, wasted time and sweating the over petty things.
Living with something like we do, is far from the norm of most people. When they learn about how we live, with the insane amount of complexities; it's not how they picture living life. It's not what they want for life, and it may just be a bit scary. Think of how it was for us being freshly diagnosed or just starting on this road. I'm sure I wasn't the only one scared shit-less. If someone hasn't even been able to experience the symptoms (although I'm jealous), having to see what EDS can do isn't pretty. Knowing there's nothing that can be done to make this beast of a condition go away, and not having a clue how to help is probably intimidating, even if you're not living it. Maybe the best thing they can think of to help us is to see if we're okay, because it is something, and it's something they can do for us, when everything else is beyond anyone's control. Sometimes, that is the best gift we can get. It doesn't happen often that someone is willing to check in with us mentally and emotionally. Because so much of it is physical, it takes a lot of work to be able to move past that, and get into the the one of the most important aspects in living with the monster we call EDS. (Please correct me if I'm wrong)
This is the little revelation I had over the weekend. I started this post earlier in the week, rather annoyed that I felt it wasn't okay to be okay. Now, I may see why someone may wonder if we're okay and if we are, how the hell we managed.
Some of us are further along this road than others. Some of us are in the thick of it and can't quite see the little spec of light at the end of the tunnel. Some of us have just come out on the other side and are ready to live, laugh, love and fight for what is right for us. Regardless, if we face the things that are haunting us, and don't back down, in time we'll be okay.
I guess all we can say is that, it's okay to be okay and it's awesome. It just takes a lot of work.
"I've got a lot of lemons and am trying to make lemonade. Now, if I could only find the vodka!"
(Tiffany, a fellow bendy friend)
(Tiffany, a fellow bendy friend)