Just typing that word right now bothers me. Why? Because it is something I struggle with all the time. In general for me, I have to work on having patience. When it comes to chronic illness, I feel like I constantly have to work on patience and just when I think I have it, puff, it disappears.
As someone with MS and lupus, I am very sensitive to weather changes. I guess overall it’s a really good thing I live in Los Angeles, CA because there aren’t that many weather changes. But I gotta tell ya that when there are changes in the atmosphere I can feel them all. I have been told many times in the past that I am a better weather predictor than a meteorologist. Om…great I guess? It means I’m suffering from it. Before I knew I had lupus and was on a treatment for it, I was a lot more sensitive to any rain that might be coming and could tell you right before it started because I’d start feeling a “rush of awful” all over. Now, since I’m feeling a bit better, I’m not as good at it. And you know, that’s ok with me. However, this past crazy LA storm over the weekend had my body reeling. I started feeling it a week before and was kicked on my butt most of last week until the storm started and was up and down all weekend as it was all happening. That is where I had to practice having patience about how I was feeling at all times. It didn’t help to be hard on me. I have no control over the weather. This also comes up in the heat with heat fatigue issues and MS but I’m sure that topic will come up in future blogs. So when I feel like I have no control I lose patience and of course I have no control over the weather.
I also need patience about chronic illness in general. I have limitations. No way! Really? Sometimes I still baffle myself when I admit that. I want to deny it. I’m supposed to be invincible and be able to do everything I want to do. I’m also supposed to feel perfect during a special event. As I posted in my past blog, I was not feeling as well as I’d like to going to the Guster concert and I had a lot of issues with that. But, I did go and I had a GREAT time. But back to the topic at hand (can’t lose patience with how I’m not staying on topic) I am always feeling symptoms like pain, stiffness and fatigue (to name a few) and quite often those symptoms need attention. I can’t push them away. I’ve tried to push them away before and it’s only made me feel worse and can make me even more limited. Soooo, again I have to work on patience. I have to let go of the outcomes and try really hard to let go of how I’m feeling so that I can go forward. Sometimes it means having to cancel plans, postpone plans, say no, and sometimes it means I make the decision to keep going and then I have to work on being patient about the outcome. Again, I can’t control my body and I can’t control the outcome. Ugh. Patience. Yucky.
And I could go on and on but the last thing I want to focus on is having patience with the medical business I have to keep doing. It really is never ending. I find myself dealing with Disability entities, medical insurance business, doctors, medical tests, trying to get my medications (incredibly hard to keep track of when I’m on a lot of them and it seems at all times with MS medications), exercising (includes 45 minutes of stretches EVERY day), resting, relaxing, spending time with family and friends and the list goes on and on. This is all daily. Well the medical business is not supposed to be personal but it is. I have no control over companies and/or the people who work there. I can’t control how long I’m on hold on the phone, if they will do what I ask them to do, if they are coherent, etc. I just have to go with it. And it REALLY TRIES MY PATIENCE. It’s not personal to them but it is personal to me. This is my body they are playing around with. I am not just a thing, I am a person.
So patience continues to be one of my biggest challenges but I find that when I do have some patience life is a lot easier. I feel better physically and mentally. I think a lot of it has to do with acceptance of me and where I am at the moment even with my emotions and feelings. Things are what they are.
But there I go again. I’ve just lost patience with what I’ve written. So I’ll keep working on it.