I haven’t written in a long time. I haven’t run in a long time either. I feel like I haven’t done much except exist in a long time. I have been wanting to express my thoughts for some time now, but I haven’t been able to formulate sentences beyond what is necessary until recently. So you might guess that I was feeling bad, but am now feeling better. Somewhat. But that is too simple. Here’s the thing – there are thousands of people that are like me – functioning, but not fully functioning. People with Lupus, Rheumatoid Arthritis, Fibromyalgia, Hashimoto’s, Sjogrens, etc, etc, etc. Some people have a diagnosis. And so many more people do not. They have no idea why they are “not up to par” as I would say about myself.
I want to talk about guilt.
I love my job. It suits me well. But, when my body is flaring on the days I work, that’s where all my energy went. I have nothing left to give the people I love the most, the people I care about the most. That makes me feel guilty. Especially knowing who might read this. My kids are growing up so fast and will be out of the house within a couple of years. I feel like they have not gotten the best of me, I hate this. My husband gets the least of me. How will this impact our marriage down the road? Friends? I just trust that the good ones will still be there.
People with autoimmune disease sometimes throw around the term ‘Spoonies’ because of the Spoon Theory that Christine Miserandio came up with to explain what it’s like to live with Lupus. Each task one must do each day takes a spoon. A healthy person has an unlimited supply of spoons, while one with a disease only has so many. We have to think carefully about what task we must do each day before we ‘run out of spoons.’ This includes getting out of bed, taking a shower, any housework, writing a blog post, going to work, getting gas, going to the grocery store, going to church, etc. My husband doesn’t understand why I don’t take a shower everyday. He asked sincerely, doesn’t it make you feel better? The answer is no, it takes so much energy to get in and hold up my arms to wash my hair. I am more tired after a shower. Every little task is something that can be overwhelming to me.
I want to talk about pain medication.
Not everyone on pain meds is an abuser or faking it. Here’s the thing about pain medication. It masks it. It doesn’t take it away. Any pain medication strong enough to take away the pain, also takes away the ability to think clearly. So most of the time my pain is a 3/4 on the pain scale. When it goes to 5, 6 or 7, I take something that brings it down to a 3/4. Any more than that, I may as well sleep. And what good does that do when you want to be a functioning member of society? Massage helps. But it doesn’t last. And insurance (at least mine) doesn’t cover it anyway. CBD oil was like taking a whole bunch of money and flushing it down the toilet. Tequila is nice for an hour, then I just feel sick. So I live with chronic pain. Running helps. Eating right helps. Massage helps. But each of those things takes a spoon. I only have so many. I have to choose between what would be really good for me and the stuff that has to get done. That is why I don’t always shower or stretch and do exercises because I have to do laundry because there is nothing left to wear, and go shopping because there isn’t food in the house, or go to work, because it’s time to go to work.
I don’t want this to be a whiny post. I want it to be for people who can say, yes, that’s me. I am not alone. And for others to say, oh, I didn’t know.
I get it, I don’t look sick. I do a lot. I run many many miles and it helps me to feel better and in more control. I smile at work and shake hands with people and help them to help themselves. I coach others to find the joy in running and make it a lifestyle because it is SO SO good for people mentally as well as physically. I do all these things and I have a genuine smile, somewhere, deep down.
I just want people to know there are many many people that are having a tough go of it. Be nice. Be kind. Be understanding. Be gracious. Be helpful. Be generous. Be loving. Be forgiving. Be patient.