It's Fucking Hard

I wrote this in response to a post that a woman made on a forum I belong to. The forum is a group of women who have Pompe (glycogen storage disease type 2), and we share information, offer support, and generally talk about our lives.  The woman I responded to was scared of the amount of muscle damage that showed up in a recent medical test, and was worried she might lose the ability to walk.  I wanted to share it here, because it contains a lot of my own fears and feelings about the disease.




I think all muscle damage is scary. I don't think I am speaking for myself saying that we all want to retain as much function as possible for as long as possible. I think that part of the reason this forum exists is to get each other through the fact that, muscle damage and loss of function is inevitable and frightening.

I go through a grieving process every time I have to give something up, whether it was walking, or going to university, or a hundred other different things. It's so hard.

Some days I'm sure that the progression has to stop, because it's already taken so much away; how could it possibly take more? Some days I think that if I lose another function or some specific function that I won't' be able to live with it and I think, "how can I go on?" But then it does happen, I lose it, and I do go on, and it's hard as hell.

I use the support of my family, friends, and health professionals to get through it. Some days it feels like nobody understands, and how could they possibly understand what it's like to feel your body slowly betraying you, or being so tired you can barely think. Honestly, a lot of times they can't, and that is another good reason this forum exists, because the people here can understand. We can be scared together, we can grieve together, and we can go on.