Life with: EDS - My Life in Memes
Warning: I get a little outside of my standard writing style in this post. As my husband says, I am usually "flowery" and subtle in the way I present things. Today I'm being brutally real.
I've mentioned lots of times on this blog the fact that I have Ehlers-Danlos Syndromes (EDS), but I thought that today I would share a little of what that means to me. It's hard to know how to communicate this to people who don't share my experience. For example:
I am never not in pain. Do I take pain meds? Yes. I take a great deal of pain meds. But no, they don't take my pain away. What they do is (sometimes) take my pain down to a level where I am able to function. My daily functioning pain level is more than many people will experience in a year. Is it easier for me to deal with pain because I am so used to it? No. No, it is not. In fact, the ongoing, constant, chronic pain builds on top of itself over and over and makes it MORE difficult to deal with. I just don't have a choice. I was always taught to push through and do what needs doing, so I do it. Usually. Sometimes I can't. But most days, I push through and do what needs doing. So what kind of pain am I talking about?
Have you ever had a bad flu bug? You know, the kind that makes every joint in your body ache and you feel like you're on fire from the inside out, and your eyes feel like they're going to pop out of your head? Yeah, that's my Tuesday. And my Thursday for that matter. What I'm getting at is that is basically what I deal with most days. Why do I feel this way?
So, yeah, it confuses people when I don't get better. Most people get a cold, and they get over it. They get the flu, and they get over it. They break a bone, and they get over it. I'm not getting over this. I have a genetic condition. That means my DNA actually tells my body to do something wrong. The only cure for that? Death. I have a brain tumor. It is not surgically removable. If and when I do radiation, it will not make the tumor go away, it will just make it stop growing. Unless God does a miracle, I will always have a brain tumor. I could go on, but you get the point. It's very hard for most people to understand that I will not "get better soon." The EDS causes me to get injuries which make me worse and from that I will hopefully improve, though not necessarily to my previous baseline. So if I don't feel better, then how can I do some of the things I do?
Please don't assume that because I chose to do something, like attend a party or take a trip, that I am miraculously feeling better. That's not how this works. When I am being very good about pacing and managing my points, I am able to function. Remember what I said above? That means function with pain. No, my pain doesn't go away, but it is low enough that I can do some of the things. Guess what, I still want to have a life. I actually believe that I have a right to have desires and relationships and do things, just like people without a chronic illness. Prove me wrong. But that will cost me in a way that healthy, able-bodied people cannot imagine. For example, I spent the day in Panama City with my cousin a couple of weeks ago. We went to church, out to lunch, drove around the city a bit, explored a supermarket, had coffee, and walked a little around a craft market by the water. I did not do much at all. The average person would call it a relaxing, low-energy day. My current points budget for Visible is 20 per day. At that rate I am less likely to "flare" or have extra symptoms and I can maintain my status quo. My day in Panama City cost me 70 points, but I chose it, and it was worth it. I knew going into that day that I would overspend my limit and have to spend several days recuperating, but I wanted to do it very much and so I did. It's not that I "felt well enough" to do it, it's that I made a choice to do it. But chronic illness doesn't just affect your pain levels and your energy, it affects your brain. The constant load of pain on your body is exhausting and it decreases your ability to think, process, remember...
That's me EVERY NIGHT before bed. Ask my husband. I've tried every trick in the book to remember having done it, and yet, I'm just not sure. Short term memory loss has been sneaking more and more into my life of late. We love to play card and board games and the last couple of weeks, as we spent more time that usual doing it on our cruise, I really struggled. So often I just could not remember whose turn it was. Did I just play? Was I just thinking about playing? Have the cards in front of me changed? It seems like a simple, small thing, but it feeds the deep-down fear of dementia, Alzheimer's, personality changes, etc. Every time I forget something now, which is many times a day, it's a little scary. It's 1:30 in the afternoon presently and I just realized that I forgot to take my medication this morning. Yes, I have an alarm and yes, it went off, and still I forgot to take them. It's a good thing my microwave beeps every minute until you open it, or I'd never eat! And then we come to the people who think they know better. Sometimes they want to be helpful. Sometimes they just want to be right because the impossibility of where I'm at frightens them.
I discussed in this post a doctor who actually had to Google my condition while I was in the office with him and felt like he knew more about it than me or my doctors. You see a lot of memes out there about people who recommend yoga, essential oils, tea, or other such things to "cure" chronic illness. The memes are there because it's real, folks. People actually say stuff like that to you. I had a woman in an airport tell me once that I was too young to need a wheelchair and just wait until I was older and then I'd really know what pain was like - as she walked easily onto the plane. The lesson here is that looks can be deceiving. A sweet lady at church on Sunday told me I was, "looking very well." I told her, "I'm glad that I can at least look like that!" I don't want to be rude or ungrateful, but I assure you that my doctors and I are on top of things and trying every feasible, and some sort of unfeasible, possibilities. I'm not just sitting around bemoaning my condition. I'm actively taking a role in my healthcare and doing all that I can to stay as healthy as I can. Notice I didn't say, "to get better." Again, chronic illnesses are... Yep, chronic. And yes, the plural form of illnesses there was intentional:
I have been diagnosed with SIBO, Lyme Disease, Epstein Barr Virus, Babesia, Bartonella, Mycoplasma, Basal Cell Carcinoma, Ehlers-Danlos Syndromes, MCAS, Dysautonomia, and an Intraventricular Pilocytic Astrocytoma. So how do I know if my migraine is from Lyme inflammation, Epstein Barr, EDS, or my brain tumor? I don't. I just know I have a migraine. How do I manage all of those diagnoses? I don't. I can't. It's too much. My doctor and I tackle what is bothering me the most (usually the top 3) every month. We try to do what we can to get those things under control and the next month it will hopefully be three new things and the other ones will be better. That's not always the case, but we try. Yep, it's a little like medical whack-a-mole, but what're you going to do?
Here's the Thing: Living with chronic illnesses is a lot. How do I manage? Well, God gave me a dark and ironic sense of humor and that helps a lot. But truly, I could not manage one day without His comfort and loving presence with me. I know it sounds a little crazy, but in many ways, I am glad for my chronic illnesses because they keep me close to Jesus.
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