One Day

Almost a month since I last posted.  I have excuses, but they're still useless.  My little sister got married Saturday to the guy I would have picked for her.  She was a stunning bride of course and I was so honored to be asked to be a part of their day.  I had so much fun (too much fun if you would've asked me the next day) that I was actually a little bummed it was all over with. 

As a caregiver, we become so wrapped up in that role that it quickly becomes our identity.  For me, it is even greater of a struggle because I find myself neglecting my own needs as an amputee patient.  And my mental health needs as well because let's face it, that is the easiest thing to dismiss for us, right? 

Mental health will forever be a subject I am completely engrossed in.  It is such a major part of every single facet and part of us and everything we are and we do.  And it is such an important part of our physiology.  Why do we go to the doctor for help when we are injured or have strep, but refuse to get help when our psyche is not up to par? Why do we never question someone getting treated for cancer or epilepsy, but we silently put walls up when we hear they are seeking treatment for mental health reasons?

I understand that it's actually a two-fold answer.  First and obviously there is the stigma.  But for me, it isn't about the stigma.  It's much like a co-dependent substance relationship.  I know that for myself, to keep me mentally fit and at my best, I have to be very guarded with who I allow into my smallest social circle.  You've likely heard it said that if you want to become rich, surround yourself with rich people.  The same is true for mental health.  You can't improve your mental health if you are only ever around those who are not mentally healthy themselves.  It's just like a drug addict. It's SO EASY to stay there. 

I was bummed the wedding was over because I realized now I have nothing to hide behind in my own mind anymore.  I have nothing to preoccupy or distract me from something that is totally unrelated to my own family and our own struggles. I have nothing that is just mine, that I don't have to feel guilty about leaving them to deal with without me. I am feeling lost in the caregiver role.  I feel like it is the driving force behind everything I am and do now. I feel like a part of who I am as an individual, slips away with each wheelchair load, or each question. And it also feels daunting.  When I was the patient and he was the caregiver, we knew this was not going to be our life forever. We knew there was a change.  I would die and he would be able to move on.  Or I would live and get better and we would be able to move on.  But with him, we don't know what the future could be.  And that scares me.

He has now received four doses of weekly steroids.  He thinks his legs are getting stronger and will try to stand.  I remind him gently (sometimes, others not so gently) that is how he has fallen almost every single time - trusting his body when he knew it wasn't trustworthy.  He still has not regained any sensation in his right side and sometimes it frightens me how little he can control his right side.  His left side often and randomly feels "weird, but not the way the right side does." While the apparent strength in his legs does give us hope, even he freely admits he feels a bigger struggle cognitively and mentally.  I can see it wearing on him physically now too.  His eyes don't track together, he looks confused at times and I wonder if he knows what we are actually doing and if he is frightened about his confusion but is also too proud to ask me any questions.  His mood swings have been a lot to handle lately and they definitely take their toll on us all, him included.  I find the well of strength I used to dig down to refill from is quickly depleting.

I still struggle with balance.  In every way: walking on my own, 😆 being caregiver vs wife.  Being caregiver vs mom.  Being caregiver vs patient.  Being caregiver and working or "taking care of myself".  I have always prided myself on the load I can carry and my pain tolerance, both physically and emotionally.  But tonight, tonight I feel tired. Tonight I wear my frustration on my sleeve like an ugly reminder of what our daily life has become.  I chastise myself for being angry and not being stronger.  For not keeping it together better and the house in order more.  But a very new and very dear resource and friend who has literally been on this same journey told me I need to give myself permission.  Permission to mourn the loss of my marriage and my husband as I knew them, even though he is still physically here.  And that concept alone will take time to absorb.  In the meantime, I do what everyone else does - one day at a time.