Hi Tammy. Your post touched me in so many ways. I actually did a double take b/c for a moment, it seemed like it was my husband posting your thoughts!
My first thought on dealing with your side of the street -- you mentioned you are sober. it's going on 8 yrs for me. My husband has 7. Al-Anon has been helpful. I'll just leave that there.
The guilt. Wow. The guilt. Here's the thing with that from my own personal experience, and bear with me please, I may be a bit long-winded, but I truly get the guilt part.
And really, when I'm looking at this right now, (thank you for your post as it is helping me clarify some stuff I've been going through here...) I believe it's less about actual guilt and more about acceptance. Go figure. Anyway, here's my experience and I hope it offers you some strength and hope:
In December 2006, after being in a really abusive relationship with a very wealthy man who was older, would not permit me to work, nor allow me to have a cell phone, computer, clean the house or do the laundry (I didn't do it to his specs...), talk on the phone, watch tv or even take a walk while he was in the home, I was "strong" enough to leave him. Before meeting him, I was extremely successful, traveled coast-to-coast for business, made a very good living. After we met, that all changed as he didn't want me to work, blah, blah,blah.
Anyway, the point is, that when I left, MY plan was to get back into my business and let me tell you, I was soooo excited! I didn't take anything from my ex; I didn't want anything. I had been sober for 3+ years, I felt emotionally and physically strong and healthy. I really did. I was just thrilled to have my life back. I can't even tell you. It was so incredibly, unbelievably empowering.
By February 26, 2007, however, I was in the hospital. Almost completely blind from what turned out to be the 1st of countless episodes of recurrent autoimmune optic neuritis related to Lupus.
For the first year, the blindness came and went so often that I was on intervenous steroids 5x's in one year and high doses of oral steroids (no less than 30mg) the rest of the year. I had reverse affect reaction to the 'roids, meaning that my blood pressure decreased - literally while it was being administred! I lost weight and I was constantly absolutely exhausted.
Self-worth? What self worth? Here this former six figure income self proclaimed real-estate czar (okay-ego was wacked...) who thinks she's a real zero cause she leaves her job for this whack-o, finally gets the nerve to leave him so she can work, AND CAN"T EVEN GET THAT RIGHT! To add insult to injury, I couldn't even hold down my 39 hour/wk job at JoAnn Fabric as the CUTTING counter girl!!!!
Tammy, I was able to find peace with the above and the not being able to work at two other "meaneal jobs" through God's grace only. I was humbled, finally, because my ego and identity was so tied to my career -- I was my career. But, outside of the career deal, I must tell you that there has been much more humiliation, acceptance, peace, humiliation, acceptance, peace, etc. It's hard to discribe the disgrace of not knowing you have to pee then completely losing your bladder in public. To go to the grocery store and accidently knock down an entire display b/c you are so dizzy or lose your balance. To bounce a check b/c all of a sudden you can't remember how to subtract. To not be able to pull the laundry out of the washing machine cause it's too heavy. Too drop the milk carton cause it too is too heavy, etc.
Last Thursday, Febraury 3rd, I had my disability hearing. I thought I was prepared. I had been waiting since september 2008. I thought I was prepared. But when the judge started asking me questions about my days, I just started sobbing. I mean sobbing. I guess I was still holding on to that career dream ego of I used to.. You see, I used to be able to rember entire legal arguements and contract verbatim. Verbatim. I was my advisaries worst nightmare! I used to make more than 100K a year. I used to spend weekends in Aspen following a 70hr workweek out west. I used to be a triathlete. I used to...
Well Tammy, I am not that woman anymore. That woman has morphed into something new. Something very very different. That's the hardest part in all this for me. Not being who I was. Yeah, okay, so alot of what I was was an a*#hole. And, yeah, I know, we all get older and our bodies change and stuff. But this disease is so flippin tough. For one, I don't even look sick. For another, I never know if I'm going to have a good bad day or a bad bad day. I know who I was. I Know who I am today right now, but who am I gonna be in 10 minute or 5 hours from now? Let alone tomorrow, for goodness sake! The unpredictablibity can be mindblowing, IF I LET IT. And, some days, or parts of days, I do. It's hard sometimes to find the positive in it. What I TRY to do is stay out of myself by helping others. People tell us to stay in the moment (in recovery). Well, sometimes the moments suck, ALOT. So, I TRY to muster what strenght I can to talk to others -- sometimes just to listen. I am selective. Part of my illness includes brain atrophy which means I have literal periods/chuncks of time I can't recall. Just like drinking without the booze! But, it forces me to be somewhat protective of whom I share so deeply with.
I want to contribute, financially, physically (around the house). It is very difficult for my husband and I right now financially. He's in construction and out of work and although I won my case with disability, I won't see any of that for another 6 months. That makes me feel guilty, ashamed, less than.
It comes down to another level of acceptance. Acceptance of where this disease is right now, what CAN I do about it (help others, today I can take a walk...), what CAN'T I do about it (change the dx, personally I can't really afford to feel sorry for myself but sometimes I do), then do what I can, accept what I can't and then that peace will come again!
I'm not certain this will help. What I can tell you is that my husband, like you, struggles with me. Patience. Prayer together, if that's something you're into, works very well for us. We pray for "patience, tollerance and love for one another as we struggle through this journey". Exact wording. And keep on talking, a problem shared is a problem cut in half!