So, if I am going to be honest then I have to be brutally honest. I wish he wasn’t sick. I wish I wasn’t sick either, but I mean this in a different way. I wish he didn’t have an autoimmune disease too. I wish there weren’t two of us in the house trying to raise children and make money and survive. If there had to be one of us, I honestly wish it was just me. I feel like he is such a baby about being sick and taking care of himself and I have to drag him around by the nose so we can have some semblance of normal in our lives — whatever that means.
What does that make me — mean? Vindictive? Hateful? No, I think it makes me just… honest. I have struggled with how I feel about this for a long time. I was diagnosed with rheumatoid arthritis about five years ago. I was diagnosed with fibromyalgia just four months later. It has been a hard, difficult journey. I have learned to accept what I can and can’t do and push myself when I needed to. I have learned to adapt and listen to my body and understand how to best take care of myself. Three years after his diagnosis of fibromyalgia and rheumatoid arthritis too, and more recently his ankylosing spondylitis – I am so tired. I have had to fight him to do what he needs to, fight others to get the right care for him because he is so young, and fight my anger at having to get up when I can barely walk to take care of him as he is slumped over on the couch in sheer pain and exhaustion.
Don’t get me wrong, there are some amazing benefits to having a partner with the same chronic illness that you have. We have an amazing bond and understand one another in ways that other people only dream of in their partners. We struggle together and have gotten in sync with how one another is affected by pain, the weather, stress, etc. We have each other to rely on when family or strangers don’t understand or aren’t kind in the way that we hope or expect. We get what it is like and even have inside jokes about dropping cups, not being able to open bottles, getting in and out of cars, and staring someone in the face who says something ridiculous like, “Well, you don’t look sick!”. We get each other, we really do.
But, sometimes… I feel like I just can’t get a break.
What about ME?
I am just tired. And, I just want someone to take care of ME for once. I want someone to remind ME of the things I need to do and make sure that the important appointments are kept for MY health. I want someone who is kind and considerate and someone who doesn’t hurt at the same time so I feel guilty asking for help when I can’t hold out any longer. I don’t want to be cranky at the same time as my partner because we are both in indescribable pain. I want to be able to have a migraine and actually take the damn day off instead of pushing myself to take meds and end up driving when I shouldn’t to pick up the kids because he is hurting and so tired that he can’t stay awake behind the wheel. I find myself angry and exhausted and hurting at the same time.
I believe in compassion. I believe that kindness is one of the few gems in this world that make or break us as people. I believe that violence does not solve an issue. But, I also believe that I want some mercy and some help and some sanity too. It is so hard to make friends — and I am still a very social person, despite my illnesses. These days, I can barely make it through a work day before I get home and slump on the couch in exhaustion. I have to get up, wake everyone up in the house and make sure it all gets done — even if I am hurting and can’t walk or my head hurts so bad that I can’t tolerate light or sound and just want to throw up everything I have ever ingested just to make myself feel better. The weekends are often spent on the couch trying to recover from keeping a regular work week. Sometimes we do family stuff together like go places and have fun at the zoo. But, I have to take pills just to get out of the car once we are there, and pain pills all the way through. It will then take me another day or so to recover from such a venture.
Don’t get me wrong. I have accepted where I am in life. I can’t change it and I don’t want to waste what little energy I do have wishing that I wasn’t sick or that my life was something different. Wishing won’t change it, it will only make me miss all the beautiful and lovely moments I do have. I am just angry and tired and…… wish I had someone to take care of ME and who could do that no matter what. I wish I had someone who didn’t have to take pain pills too, just to do normal things like walk through the grocery store or do the dishes.
Is that a fantasy? Is that a pipe dream? I honestly don’t know. I don’t even know what it feels like to have energy anymore……