I am 25 years old. I am 25 years old and most days, I feel so disconnected from that age. I don't know how it might feel to be in my 30s, 40s, 50s... or even in my 60s, 70s, and 80s... but I do know I don't feel 25. My mornings are slow. Its hard to get out of bed. I am exhausted. Most of the time sleep doesn't feel very restful anymore. Some days are better than others, but most days I am wondering why I feel so drained... like I have been pulling all-nighters multiple nights in a row. Beyond feeling unrested, the morning is the worst time for my AS. I can barely roll over or sit up due to the stiffness in my back and hips. I feel frozen or like I climbed a mountain the day before. I don't have the severe, sharp pain I was having, but I am very aware of the difference I feel now compared to a few short years ago. It seems harder every day to get going, and get motivated. I usually try a few stretches, maybe a hot shower, but really I just have to wait for my body to catch up to the idea that we can't sleep forever. That I can't afford to hide in the covers all day and sleep the pain, the stiffness, the fear, and tiredness away. It doesn't really matter if sleep 5 hours, 10 hours, nor a whole day though... It's the kind of tired that sleep doesn't fix.
Having a chronic disease is exhausting. It is a constant battle happening within yourself, and it will never stop. There may be periods of remission, or things that you can do to help quiet the pain... but it is a part of you forever. That in itself, is such an exhausting thought. Even though I feel so tired, so often, it is hard for me to relax and let go into the place where I get the most rest. Its hard to fall asleep or face the night. I try to get comfortable, not think too much, and just let go... My body holds on. I can feel the tension in my muscles, my ligaments, and even down into the center of my bones. I have to mentally work with each part of my body to help it let go... to release whatever it is my body seems determined to hold on to. Sometimes it feels like my body is holding on so tight to protect itself, out of fear or something else, but it does not realize the damage it does in return. By hanging on and fighting so hard, I don't feel I am ever recuperating theses days. I just feel so tired. Its hard to remain positive the more exhausted you feel.
Sometimes I find it hard to differentiate whats happening in my personal life and what is just a symptom of the disease. I know that fatigue and trouble sleeping is a part of AS... it has been something I battled with when my symptoms first started. However, I also know that when I got on medication that seemed to really help the inflammation and pain, it seemed to help with the sleep as well. The more that my life becomes more exhausting or stressful, the more I am noticing the symptoms start to rear their ugly heads. Perhaps there really is no differentiation and the two or always in complete communication. I have to believe that stress and the disease are working together to wear me down... and the hardest part is figuring out how to have the energy to fix it. Having the energy to problem solve and know what to do in my life to fix it seems like an exhausting thought. Sometimes you just feel that you are trying so hard to do what you have to do and, at the same time, trying to take care of yourself in the process.
I want to be able to be off of my drugs. I am still only taking the 7.5 mg of Meloxicam, but my goal is not be dependent on it for pain/symptom relief. That being said, I haven't had the medication in 3 days and my hip is starting to ache the most it has in months. If I am being totally honest with you, it actually just makes me want to break down and cry. Something about the pain in this disease is so disheartening and draining. It makes me feel physically, mentally, and emotionally weak. It is the kind of tired that sleep can't fix.
I want a good book, a week off, and maybe a little bit of wine. I want a beach chair and an afternoon nap. I want just a couple of sweet days off with my husband where we aren't trying to have a relationship between work, school, and second jobs. I want the energy and reassurance to tell myself that this is a bad patch, and well.. they are going to happen. I can't fix everything at once and my exhaustion is sadly making me think that I have to for some reason.
AS is an exhausting disease. It is hard to get out of bed in the morning. It feels like I have aged decades overnight. My nights are restless, and my body continues to hang on when all I want it to do is let the day, the week, and even the last year go. My mind is racing with the possibilities, the effects of the drugs, work, my physical well being, and the future of our family. My emotions are strung out, and most days I feel like I am compromising to loose the little bit of my youth I have left. AS is the kind of tired that sleep can't fix...
It's the kind of tired that only I can help fix. It's the yoga that teaches me to talk to my body and help it let go. It's knowing that the medication is okay for now, especially under this period of stress... and that I will find another time in my life to try to go without it. It's letting myself sleep when I can and knowing that every once in a while, sleeping in until 10 a.m. could be a life saver. It's picking one thing at a time battle instead of the whole war. It's doing something for me every once in a while and letting myself feel young...
AS is exhausting. And sadly, it has been more exhausting lately. The mornings have been harder and I have had less restful sleep. I am feeling completely drained and emotional about these symptoms, and honestly life in general. This is part of the journey and what I am hoping for is to grow from it. In the meantime, if I seem cranky, well I probably am. We could all use a little compassion, understanding, and patience from our loved ones. I can think of no better treatment for myself. I just need to remember that as much as I need this from others, I need it most from myself. Hoping for a better week as this one comes to an end. It's the kind of tired a little self-love and compassion just might fix...
Amanda
