Change is good, it can be liberating and it can be down right scary. I've always believed in doing things that scare the crap out of me- within moderation and safety constraints (at least as I've gotten older).
My partner and I have recently had to come to terms with my chronic health issues that will never go a way. As with anyone dealing with a chronic condition it has effected every part of our lives. This is a scary real fact; the divorce rate of people with a chronic condition is 75%. We have recently felt all of that statistic.
I am not going to go into too much detail, but for me this started around three years ago. I have Joint Hypermobility Syndrome which causes Chronic Pain Syndrome. It's a connective tissue disorder. A lot of people are "double jointed" and have loose joints. Mine- are ridiculously loose, my bones, ligaments and tendons move around pretty much on their own. I have a really hard time keeping my balance, steps suck a lot for me most of the time now. When I walk, the bones in my feet move and grind, my right hip dislocates and moves too. I have to be careful of the bra I wear on bad days, because it will push my ribs out of place and I it's hard to breathe. My right hand doesn't work very well anymore. I have a hard time opening water bottles because when I try to open one, it pushes my finger to dislocate.
There are days I have to use a cane and days I don't. I'm in pain most of the time and get tired really fast. I'm not talking about the -I need an afternoon nap kind of tired. It's the I am going to pass out any second tired. Most people don't think about moving around, I have to think about every moment. If I drop something, I have to think and move slow to pick it up, or else I'll have problems later. So, basically I have to hold my joints in while walking or standing. I cannot sit or stand for too long, and laying down for the sake of just laying around is not an option for me. My body will lock up and that's no good.
Sleep is super important for me to heal. The reason for this is throughout the day I dislocate so much and when that happens it causes micro rips in my soft tissue. These try to heal while I'm sleeping. I say try because they never heal completely. Sleep is a funny thing for people like me. I cannot sleep too deeply for two reasons. One, I'm a mom and you all know once you have a child you do not sleep deeply. Two, I have to move around constantly not staying in one place too long, because the mattress pushes my joints out of place.
I also have memory issues and have a hard time coming up with words I want to use, or how I want to say something. This is really devastating to me because my degree is in communication and I've always been able to give a well thought out argument.
I'm not writing this for you to feel bad for me. I'm writing this because there are a lot of people just like me, not understanding what is going on with their body. This affects every aspect of one's life. There are really good days and really bad days, but I can't let it ruin my life or my life with my family. It's hard because I do not look sick, because I'm not sick. Sick implies that I will get over it, I won't.
It's hard for other people to understand. I've been accused of being lazy and worthless and believe me that is painful to hear. Heck, it's painful to write that, but it's true. Again, I'm not the only one who is going through this. One of my favorite quotes that floats around Facebook and Pinterest is "Be kind to others because you have no idea what they are going through." People can be so mean and judgmental and I have definitely been one of those people. But, people can also be amazingly kind and comforting. Those are the people you want to hold onto. To the other's forget them, what they think does not matter one bit, because they obviously don't care enough about you to find out what's going on. You also don't need to constantly explain yourself to others. People who truly care about you won't make you do that. So, hold on to the people who care and get rid of the rest.
My family and I are trying to come to terms with this in our own way. It has been hard, my partner has been working out of town for going on 10 months now. He comes home on the weekend, so I haven't had a lot of help, but hopefully he should be home soon.
I started this blog to help me remember all the things I've changed in the house. To document what has worked and what mistakes I've made along the way. Plus, it keeps me doing things that I love. It might take me twice as long as the next person to get things done, but I'm still trying. Here's another thing, when someone with chronic pain tells you they can't go out with you, they are not blowing you off. It's because they can't. I still want to go out and have fun, but It costs me the next day.
The beginning of this post I talked about changed. What do women do to signify change? We lose weight or change our hair. Well losing weight is always on the agenda, I wanted something instant. My stylist had been texting back and forth and this is what we came up with.
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