I don’t know how to begin to explain the joy that is putting on clothing when you have chronic pain issues. Because you have no idea how all that stuff is connected until one thing hurts. And it can be only one thing. Or many. Either way, it’s a load of fun.
When people have surgery, they learn quickly what is connected with what. When I had my oldest, there were complications that lead to me basically having to have minor surgery to fix things after. And it was the most painful experience of my life. Or at least it was in the top five. I was still in the hospital when I sneezed. Before I could even start crying, there was a nurse there to put something good in my IV. Because all that stuff is connected And even coughing was profoundly painful. It took me a month to be able to walk fully upright. I have heard from people who have had even laparoscopic surgery that said they had no idea how connected those muscles were until they coughed. Or sneezed. Or went to stand up. And everything, and I mean everything went OHFUCKNO and that was the end of that.
In my case, things are strange. Things that hurt one day, may not hurt another day. One morning I may have full range of motion and then other mornings I try to stand up and hiss in that special way that means “Where the hell did that come from?”. I am lucky enough to have swelling in my sternum due to RA. And that is one of those things that you don’t know how much you flex that area until you flex it and it puts in its two cents worth. It makes using my nose spray fun because sneezing is so painful that I will brace myself on the counter. Which is a bad idea as that is how you hit your head and knock yourself cold. Which is about the most embarrassing thing to do. Especially when there is no one in the house with you and you wake up on the floor with a bump on your head. Not that I would know from experience. NOT AT ALL. I watched Jessica do it. At least once.
So – putting on clothes and how it relates to the rest of my life.
For the most part, we cannot go in public, as women, without a bra on. This is something that can be uncomfortable physically and just socially. But on the days I cannot put one on, what do I do? My husband has given me suggestions about how to put on my bra which makes me want to stab him in the face. Guess who has never worn a bra? HIM! And guess who has no idea how to twist their shoulders and hips and torso to put one on? Well, again, that would be him. Any form of trying to put one on when you have shoulder, neck and sternum issues is amazing. Put it on backwards and turn it around? Still hurts. Put in on with the straps up and over already? Twisting shoulders and torso to get it hooked – still hurts. What it comes down to is – it hurts. It is social and sometimes physical necessity that most people who don’t have to wear one or who *do* have to wear one but don’t have pain issues don’t grok the depth of having to wear one to go out.
So let’s talk about anxiety about leaving the house. Like the bra, there are things that can make me socially and physically uncomfortable about leaving the house. And the “helpful” commentary I get about leaving the house isn’t actually helpful. My anxiety disorder and asking me what “set it off this time” is like asking me why my sternum hurts. Well, I have RA. In my sternum. Why am I having a panic attack about leaving the house? Well, I have an anxiety disorder. There is nothing that “sets it off”. It is something that lurks in my life and some days makes it impossible to do the easiest of things. And continuing to insist that there has to be something that can be done or changed or started or stopped isn’t helpful. My Vicodin helps with the pain a bit, but doesn’t guarantee that I can rotate my shoulders. My Xanax and my antidepressant help with the anxiety disorder and intrusive thoughts, but doesn’t always mean that I can bounce out of bed and run out to PetSmart. It means that I have some chemicals that help to combat the fucked up chemicals that I live with. Not cured. Not fixed. Not perfect. And surely not suddenly explainable.
And much like the weather changing can add to my pain issues, things that change and happen around me can add to my anxiety and my depression. The chemical mix I am on now seemed to be working pretty well. I felt better than I had in years. And then something happened. Something large and angry and was not something that I had any control over. My husband and my daughter managed to have a screaming fight on Thanksgiving at my parent’s house. So what little I had gained, I lost, and then some. When the adults in your life cannot act like they are adults, there is little you can do to make things better. And when the person who is supposed to have been the one who takes care of you and protects you from the world becomes the person who shoves you back down the hill, it’s a hard pill to take. Living with someone who doesn’t have your best interest at heart for whatever reason is something that will make a sick person, sicker. It is as if they have forced a weather change and then get angry when your shoulders hurt. There’s nothing I can do to fix my brain. The only thing I can do is get help from the person who is supposed to be there to support me.
Which leads me to wonder about when it has become too much. Most of us who suffer from chronic and/or recurring health issues wonder when we will become too much. When helping becomes something not that the other person wants to do, but feels they *have* to do and it becomes a burden. And in some cases, they begin to sabotage you because it’s the only way they know how to act out their frustration. Which makes you worse and you need more help. Which means they become more resentful. Which makes you worse. Because let me tell you, we can tell when you are being hurtful on purpose. Or obtuse on purpose. Or are shoving us back down a hill on purpose because it has become too much to deal with and it feels good to shove, finally. Helping me put on a bra is an easy thing. But continuing to try to help me stay calm, get things done around the house and get me to go out to do even family things, day in and day out, is way more complicated and exhausting than helping with the pain issues. Add them together, and every day that passes, some of us wonder when it will be done. Or when the help will just stop. Or turn to harm. Or if it already has turned to harm and I have turned a blind eye to it, because what the hell else can I do? It isn’t like I’m a trust fund kid who can just do her own thing. I am dependant on the person who now holds a job. And who is angry that their money isn’t enough. And who is angry that *I* don’t have enough money. Angry about things I cannot fix. I have a child to think of outside of my own health. He has to come first. And even then, it is a struggle to make sure these things are done for him the way they should be.
So I guess the long and the short of it at this point is that helping me put on a bra or vacuuming the living room is easy. Being an emotional support and respecting my fucked up chemicals in my brain is much harder. And in a lot of cases, more harm than help is given. And we can’t even explain that. Because it’s harder for me to explain why what you think is a normal conversation in some cases is pushing me closer to the edge. Just like me telling you that my sternum hurts, you have to take my word for it that this conversation, for example, is making me hurt and I need your help.
Until one day, I realize that the help has ended. And it will. I have looked up statistics on people with chronic pain, depression, anxiety and all the other little fun things I have pinging around my life and I realize that we don’t stay married. Our partners become exhausted. Or we do when we can no longer bring ourselves to continue to explain why our partner is hurting us, physically and emotionally. When we are forced to make choices about what is more important to us – monetary security or emotional support. And then we are faced with the reality that we have neither. That’s when we stop wearing a bra and going out in public. And that’s when we stop trying to become a person who can shoulder it all. We stop trying to become a person. We stop wanting to be.
And we do. We stop.