A phrase I’ve been seeing a lot in the Lyme world is “you don’t get it until you get it”. This is so true. I’ve had several friends email me recently, struggling with chronic illnesses or prolonged life-changing injuries, with words of encouragement, support and empathy. I’m amazed at how many people, even friends of mine, who are going through health obstacles and I had no idea! Even though they don’t have Lyme, they really understand at least some aspect of what I’m dealing with every day, and it’s so comforting.
The first conversation I had with someone else who has Lyme was hours long, and could have lasted all day. It was such a relief to talk to someone who actually gets it. When I watched “Under Our Skin” I bawled through at least half of the documentary – mostly because it was so unbelievable and sad, yet such a release of loneliness, to see that there are other people in this world who know EXACTLY what this disease is like. Fortunately, those closest to me do not have the empathy from experience. Unfortunately, that means most everyone I know can’t quite relate.
Christmas is my favorite time of year, but getting ready for the holidays was really, really hard on me this time around. From the big tasks, like going out shopping and decorating the house, to the little stuff, like wrapping presents and making cookies. Every day is like this, but it especially hit home how difficult it was for me to do things that are so normal and easy for other people.
The best part about the end of the year is getting to spend the holidays with my family. But it’s inevitable that I will not get to participate in certain activities. For instance, every time we are home, my siblings spend one night together going out to the bar. And I never get to go. It’s so discouraging – to be invited by friends, to have my sister and husband plead to have me join in the fun, and to know that I just won’t be up to the challenge. And it’s even more frustrating that they just don’t get what it’s like and don’t understand why I have to say no. I rarely go out in public, especially to bars and restaurants, because sitting in standard chairs causes so much pain. Drinking makes me sick and I’m always so tired. For lack of a better word, I just feel like crap. And the worst part is when I DO muster the strength and energy to go out, I have to work extra hard to make it look like I’m doing well. The challenge of talking to someone when I’m in so much pain, when all I want to do is lay on the couch or in my bed, is unreal. And now New Years Eve is approaching, and another invitation to do it all over again.
Another family tradition during the holidays is bowling, and I love it! I may or may not be the most competitive person out there and let’s face it fam – I can really kick some ass knocking those pins down, right? However, all week long I was almost dreading the event. Just the thought of being in the car for 1.5 hours, standing and sitting for 2 more hours was bad enough, let alone the attempt to hold and throw a heavy ball over and over. I’m starting to feel more and more like I just can’t make it through, and it’s depressing! What’s the point of a life I can’t enjoy, and moments I can’t share with everyone I love?
I think I’m coming to grips with the fact that most people in my life will never truly get it. That I will be faced with daily obstacles that will challenge me to the core and that I will ultimately have to face alone – the loneliness of an invisible, chronic disease. It’s a tough pill to swallow.
Now, I’m not one for New Years resolutions at ALL. But as we are preparing to ring in 2015, despite the challenges I’m bound to face, I am determined to make the most of every day. It’s so hard not to feel sorry for myself, but I have to remember that it could always be worse. I can’t walk very far, but I CAN walk. Working is a challenge, but I CAN work. I don’t have many good days, but I DO have some good days. In the coming year, I plan to take advantage of every good moment that I have. My goal is to educate as many people as possible about my disease, but not to expect that they fully comprehend what it’s like to live with Lyme. And if there is anyone out there who needs to talk about their illness, I am here to listen. I’ve got it, and I get it!
