Some of you know that I have had some trouble with my arm over the past year and a half, but what I may or may not have divulged is that it’s not just a little thing.
My entire left arm, which happens to be my dominant hand, is affected by what the doctors like to call an Ulnar Neuropathy. They call it that because they don’t know what else to call it. Through X-rays and MRIs, ultrasounds and nerve stimulation studies, they have come up empty handed as to why this is happening to me. I have tried more drugs than I can name, with side effects that have crippled my ability to function.
In the end, I have been left with severe chronic pain that affects my ability to be a mom, partner and human being. Pain that cannot be measured on a scale or quantified in medical imagery. Pain that isn’t good enough for the insurance companies, so I am forced to jump through endless hoops to “prove” that I am worthy of the benefits I am granted through my work, just to be able to pay my rent.
I share this with all of you, because in trying to live my daily life, I want people to know that just because I smile or go to choir or make a joke, that doesn’t mean that I am okay. Those things can be a wonderful distraction from the endless exhaustion, depression and pain that plague my every day. These things make me feel normal when few things these days do.
Least of which is being labelled as having a disability. The first time someone used that word with regard to me, I cried. And the next time, and the next. I was healthy and happy and had a wonderful career, and now I am here. I am 31 and have a disability that prevents me from working or from picking up my son. It means I take forever in the grocery store trying to not wince as I push the tiny grocery cart and use my other arm to pack the bags, while the people behind me sigh that I am taking too long. It means that I cant get my son to school on time, because I am literally exhausted just from getting out of bed and it takes me forever to help him put on his shoes or brush his teeth.
It sucks. There is no way around it, it just does. I have sugar coated it for a long time with people, because its uncomfortable divulging it all to people. I think they won’t believe me, tell me its all in my head, think I am weak or will just tell me that they are sure I’m fine and that it will just go away. Unless you have had a serious illness or long term condition, its hard to understand the level of impact that these things have on not just your body but on your mind.
I recently had a friend talk to me about her medical struggles on a deeper level than we had ever spoken on before, and she told me some things that have really affected me and the way that I am trying to live my life from now on.
She told me not to worry about what other people are thinking or saying. That the people that matter know the whole story, not the people at work, not the people at the grocery store. So if any of them have anything to say, let it go.
Accept help. I literally cannot do it all anymore, and thats okay. There are people who love and support me and I need to say yes when they ask if they can help, or speak up when I need to get help. No one will think less of me for asking or saying yes. They want to help, I’m not a burden.
Understand that this is my current situation and accept that, and live within that framework. That doesn’t mean that I can’t hope for better days or ever wish that things were different, but living in a world of endless hope and no reality just sets me up for a huge disappointment.
So this is me now, I am different then before, but still me.
(If you are still reading this and are wondering what to do from here, you can read this article. Its awesome.)