Reeve Foundation Paralysis Community

Hi
I have just spent the last 2 - 3 weeks reading all the posts on this forum. I cried, I laughed, I agreed, and I thought hmmm.

My husband is C4 complete. We just had the 3rd anniversary(?) of his diving injury. I especially relate to alot of the things that Trish says, I am just not brave enough to say them.

I am my husbands sole caregiver. While I don't have to worry about a trach and suctioning or a TBI, he does have short term memory loss. And has chronic pain. The thought of the extra work for the holidays, birthdays, or any special event makes me exhausted, but nobody gets it. It is really just another day with additional work. Nothing feels special anymore.

The list of things I want really hit home - 6 hours of unterrupted sleep sounds like heaven.

It was really nice to read what other people have said and to know that I am not alone.

Valola,

 

Welcome!  I’m so glad you have joined the community.  I spent many years denying that this lifestyle is a hard gig.  I knew it in my head but didn’t want to let anyone else know it.  It’s getting harder and harder to fake it these days.  I know what you mean when you say nothing feels special anymore.  We have our first big family wedding coming up in a few weeks; my oldest niece is getting married.  Everyone is so excited, and it’s going to be a big hairy deal.  But I can hardly get excited.  All I can think about is how difficult it is going to be taking care of my husband during the event.  I just want to enjoy myself, feed only myself, dance, and close the reception down like all my other family members will do.  Instead, I will sit quietly next to my husband and care for him and leave when he is tired of it all.  Hardly a rip roaring time for such an exciting event.

 

I hope you will continue to post but you have a point.  I should probably learn to censor myself a little more.

---

Trish

"Life isn't about waiting for the storm to pass...it's learning to dance in the rain."

Trish
I absolutely do not want you to censor yourself. Your expressions validate what I am feeling (now that sounds selfish). I actually wish I was strong enough to say what I feel. But both my husband and I both tiptoe around each other's feelings and don't really speak about anything of deep meaning.

I can appreciate what you are saying about the wedding too. My daughter got married a year ago and my son is getting married this summer. It is alot of work and very little enjoyment.