There is so much I want to be able to do with this blog and so much I want to accomplish but I need to keep some kind of focus. That’s the hard part of being me… focusing… the quad teases me about it all the time. I’ve realized that my brain moves so much quicker than the rest of my body that I have trouble staying with one task since I’m constantly thinking about other things I need to do. and yes, I get them all finished. but never one at a time. I just don’t and well, can’t.
But for this, I need to try to stay focused. I’m doing this to help caregivers. Specifically SCI caregivers since those are my peeps but I know that other caregivers dealing with other disabilities/diseases/conditions will benefit so this is for them too. Being a caregiver is hard. It is. There is no easy way around it. Although I have (kind of) come to terms with things and have started to get the help that I need, I still have really bad days. WHAT? you say. YES! I say. I have really bad days. but I also have really good days. and what I’d like is for other caregivers to be able to have really good days.
There is no magic pill though. I have begged and pleaded for one but I have yet to find one. So, what I suggest is that if you are a caregiver or if you know a caregiver, talk. Talk to someone who gets it. It’s kind of that way with every hard situation. Talking to someone who gets it helps. it does. Talking to friends also helps. For the first time ever, I admitted to my best friend, after over five years of hell, that I was depressed and getting help and that things were tough. and you know what? she already knew. Yes, the girl that I love as my sister, who I don’t get to see that often so I think I can hide things from, already knew that I was hurting. And just talking to her about it helped me out so much more than I can even begin to explain.
Caregivers are a different breed. Especially spouses. Especially spouses of those with SCIs…. We suffer in silence. Why should I complain? I mean, really? Why should I complain? I can walk. I can feed myself. I can get up in the middle of the night and comfort our child and hug her and hold her. My husband cannot. So, for too long, I didn’t complain. To anyone. And then when I did, it was only to the quad. And let’s face it, that didn’t help at all…. No, complaining doesn’t help BUT it doesn’t help to keep it inside. So, complaining isn’t the best word but it’s what we feel like we’re doing when we talk about our situations.
You know what sucks? Let me list it.
- Not being able to have my husband hug me.
- Taking out the trash by myself.
- Not being able to cuddle.
- Not being able to go to bed whenever I damn well feel like it.
- Cooking dinner. yes, I hate to cook dinner and although pretty good at it now, I was TERRIBLE. the quad was an AMAZING cook.
- Changing all the diapers.
- Getting up when the kid is sick.
- Cleaning up puke; from the dog, kid or quad.
- Being sick and having no one to go get soup or ginger ale.
- Being sick and having to take care of a sick kid/quad.
- Working while being a caregiver.
- Not being able to hold hands with my husband.
- Not being able to sit in his lap for long periods of time.
- Not being able to sit on the couch and cuddle while watching a movie…
I could go on and on. and yes, these are complaints but as caregivers, IT IS OKAY TO SAY THESE THINGS OUT LOUD! IT IS! keeping them inside doesn’t do anyone good. It doesn’t. No, it doesn’t do anyone good to wallow but it’s okay to voice these. It’s okay to be sad about them. It’s okay to be upset. It’s okay to feel like life isn’t fair since IT ISN’T.
It is okay to want to give up. It is okay to cry. It is okay to admit that you cannot do everything. I saw a quote this weekend and thought that it was perfect…
You know what truly aches all that you are? Having so much inside you and not having the slightest clue of how to pour it out. – Christopher Poindexter
And this is why I’m here. I’m learning how to pour it out so I do not ache inside any longer. And I hope that the things I’ve learned can help others no longer ache.