Something Worth Fighting For: Life Goes On

Accepting help

“Permanently disabled”.

Well, that’s the first time I’ve heard those words used in conjunction to describe me.

Yesterday, I went to see a neuromuscular doctor for the first time, and it was…it was weird. It was actually super easy, and not what I was expecting at all. I guess now, since I have an actual diagnosis and a name to go with my symptoms…there are just a shit ton less hoops to jump through. I don’t have to justify how I feel, or feel crazy for feeling as badly as I do all the time. Crazy, I know.

Basically, it’s time for me to have a wheelchair. I’ve never brought it up before, I’ve never admitted to needing one before…but I get that it’s time. My husband has been encouraging me to for a while, and I know he would feel a whole lot safer if I had one. So that I can be safer.

I shouldn’t have feelings about it, but I do. My 5 year old has a wheelchair, and, while, yes…I do have feelings about that, they’re more feelings of sadness. With me, it’s more like shame, or feelings that I’m a failure. Like I couldn’t do it, like I’m weak…it just doesn’t feel good. And I know that’s ridiculous.

There’s a really big part of me that is feeling defeated right now. That just wants to give up and quit. I feel like I can’t keep taking care of everyone else and their needs while my own are diminishing so quickly. It’s scary. It really is.

To be at the point where I have to admit that I need help, but still have to go above and beyond my limitations to take care of everyone else…it’s fucking terrifying. I feel like I just can’t do it. Like they deserve someone else, someone better.

I don’t know, I’m just feeling really, incredibly defeated right now. I’m so tired, emotionally and physically, and I just want to give up. I am struggling to see the light, to see what’s left to hold on to.

I’m battling the thing that exists between logic and feeling. I know that logically, things may be different than how they feel emotionally. But that’s not always enough of a push to get me to feel better, or to change how I feel about it.

I feel like I’ve been doing a lot of self sabotaging lately, and I feel like I’m starting to push my husband away. And that’s probably the very most dangerous thing that I can possibly do.

It was a blow to the gut when my doctor handed me the forms indicating that I’m “permanently disabled”. I suppose it stripped me of another layer of false hope I tried so long to hold on to.

Again, in reality, I already know that I have a progressive genetic disorder that is NOT going anywhere…but I still act like its very existence isn’t real, and it’s always kind of a slap in the face when I’m so boldly reminded that it is.

It’s like, the definition of not being in control. I’m not even control of my own body, my own physical capabilities. And more and more, I will be forced to ask for, and to accept help. Which is the very thing that I struggle with the most.

I know I should be grateful that it’s possible for me to even be able to have the help I have available to me, like a wheelchair or anything like that. I know a lot of people have to fight that battle, and it isn’t easy to actually get the help that you need.

But sometimes, it’s hard to be grateful for the things like that…when you just wish you didn’t need to be grateful for it at all.

I’m glad I have help…but I wish I didn’t need it. And I’m so miserably awful at actually accepting it.

But this isn’t going anywhere, so I guess all that’s left for me to do is to accept it.

And to surrender to it.

There’s that word again. Surrender.

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