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.
12 thoughts on “Accepting help”
Losing abilities is really hard.
It really is. Especially when you hate asking for help as much as I do
You do have the opportunity to set an example for your child, by working through your grief (you “should” feel how you feel! Losing abilities is a real loss) but not letting your disability keep you from reaching your goals. You are amazing, and you’ve got this!
Thank you! Yeah, it’s definitely a strange balance between trying to be a good example for them…while also fighting my own demons when it comes to it. I guess it’s a good push towards demonstrating some more positive things, though.
I remember when I got told it was chronic and I just had to deal with it. Losing the abilities of caring for yourself and others is hard. And when you also lose the spark of hope that you cherished of maybe beating the odds… Yeah it sucks! I do hope you’ll get your aid and that you can acknowledge how they met help you. Using a wheelchair may mean having more energy to play with the kids perhaps?
Wishing you all the best 🌸
Yeah I think it’ll definitely help some. It’s just one of those frustrating things that I know I need to deal with and accept.
I hope you’ll get a good one quickly and are able to adapt shortly so you can benefit from it for a full 200%! You deserve some support with all you’re going through 💪🏼. Have a wonderful weekend 🌸.
Is it possible for you and your husband to get home-health support? I know that HMOs (and other insurance loops) are a nightmare to deal with; but perhaps with the formal diagnosis of “permanently disabled” you can acquire some additional help at home. Remember that your peace of mind is necessary before you can effectively care for others. Sending you positive vibes and hope from the Sonoran Desert! 💜
It probably would be an option, but I don’t want that. At least not now. Maybe a few more years of losing my shit on a daily basis and I’ll get there 🤣
I understand that notion, completely. 😉
Ohhhh Alana – I am sorry for this news. You are a fighter and surrender is going to be part of your strategy to live in this world with some peace and comfort.
I was in a wheelchair ONCE for only 3 days due to a disc issue in my back.
The whole world looked different and looked at me differently 💜
I will say a prayer for your strength my friend❤️
Surrendering is definitely going to be necessary for me to have any kind of peace.
And yeah, I imagine me and my kids all wheeling around in public while my husband walks beside us will definitely cause a small scene 😂