- 4 years ago
I’m a regular bee but I’m being stealthy as we’re not discussing this with family and friends yet and I’ve really been suffering with this alone.
Fiance started to have issues with pain and muscle strength a couple months after our engagement. I dismissed much of it at first. Even after diagnosis of issues there was a possibility of this being temporary. The windows for temporary have come and gone and subtily (I don’t even know when it transitioned the shift was so gradual) I became a sole care giver to an early 30s man with life long, progressive, neuromuscular disease. Although not terminal like some but quality of life is greatly impacted and will continuously get worse. Even during our engagment the progression has seems really fast.
We’re not even married and our lives have changed in the following ways:
– Looking for work has degraded to in him really stuggling to find positions he can even do. He’s been out of work 11 months and is relying on an agency that tries to place disabled people with employers that can deal with them. In this economy that’s hard to do I tell ya as able bodied people will happlily take those jobs.
– We don’t have a lot of sex anymore – once this year so far and that took him two weeks to recover from. Sure we have intimacy but sometimes that’s not what I need.
– He doesn’t drive, has trouble with some personal care himself so he can’t shave or things like that, and can’t do much around the house. I’m planning our wedding, working a stressful job and doing 99.9% of everything else in our home and personal affairs.
– As much as I don’t want to think about it, our honeymoon is impossible for us to do together and will likely never happen. An amazing bucket list of stuff I’d always wanted to do but probably never will because how could I possibly leave him home and go live life? I don’t even know what honeymoons are possible for someone disabled and in chronic pain and I’m so depressed to sit down and think about such change.
– His family doesn’t have much to do with him… and they l live 4500 miles away even if they knew or understood the gravity of the situation I’m not sure how much they would care or get involved. His support network is mostly me and a few friends he’s decided to talk to. I’ve made him seem outside emotional support because being his everything was killing me and atleast that’s relief.
– My family is developing growing concerns with this “leech” I’m about to marry. I’ve sat though a number of interventions and since we’re not really discussing details of the illness it really seems bad when they lay it out. When I meantion hints of illness it doesn’t generate much empathy and would likely result in them trying to end the engagement due to health red flags if we laid it all out.
I feel just aweful but I don’t know why I should move forward with the marriage. When I was single this sitations was seriously my worst nightmare: Sole bread winner, sole house keeper and cook, no sex, a situation that would be akin to being a single mother if I had a child (even though I already had a dependant) and someone that holds me back from doing what I love (adventure travel being top of the list). At times I just don’t know what the heck I was thinking signing up for this. I know it’s selfish but want to bail and then I feel bad because before this all happened I was prepared for my vows about being there in sickness. The problem is I never imagined it would be this soon or this harsh. I guess I always just planned for us to stay healthy and die together.
I feel worse when I see the couples that seem to get stronger by serious illness – but I feel guilty, resentful, and trapped but I really don’t feel like this is making us stronger. I secretly in the darkest places of my mind wish he had a fatal diagnosis so maybe he’s pass away while I was young enough to move on. 30-40 years of this times 100 as things progress seems like hell. I know that sounds aweful but it feels nice to admit it to someone even though it’s only a passing thought.
I do still love him but much of the basis of our relationship is challenged. Our courtship was active, full of adventure and sex fueled and that’s been taken away. We still have long talks and theatre those we’ll always have but I really struggle with loss of our past, struggle to cope with today and I am so very scared of our future. We’ve been in counseling as marriage prep but it seems superficial. Some of the challenges have come up but we talk about the issues of money and one income but I don’t know how to sneak in there that I’m a selfish horrible person that’s not sure she wants to sign up for this life with him. I know he fears that and the last thing in the world I want is to reinforce his fear. As much as I focused on me in this rant, he’s life has equally been screwed up while he’s actually dealing with the pain and everything else I don’t experience. He’s also dealing with so much and I feel like I can’t even talk about how I’m struggling with it.
I’m not really sure if I have a question. PArtially I’m just greatful for the rant of things I feel badly keeping to myself.