The day might start off normal, he might be his typical self. He might do the dishes, have breakfast with me and maybe even run some errands. We’ll laugh and have conversations and clean the house or go out for a walk together.
Most days this doesn’t last forever. Most days he starts to lose steam and slow down. He’ll sit down and mention that he feels really tired. When I look back at him often he’s fallen asleep sitting up or while holding a cup of water in his hand. Sometimes I’ll find him slumped over and barely conscious.
He’ll be ok when I leave for work and I’ll have a small list of things I need him to do because I don’t have the time to take care of everything. While at work I won’t be able to get ahold of him because he’ll be asleep all day, because he literally can’t stay awake. So most of the time I need to figure out how to get my work done and in my free time get everything else done.
I never know if I will come home to him collapsed on the floor, which has happened in the past. I never know if I’ll have to spend my evening caring for him after a long day of work and a long commute home. But in the end he’s the love of my life and my best friend, there is nobody else I want to spend my life with. I never imagined I’d have a life of a caretaker but anyone who ends up in this position probably didn’t know they’d end up here.
It feels like this place we’re at, this medical issue we’re dealing with and the other stuff piled on top, has no end in sight. I want to try to be optimistic and there are days where I feel more positive than other days but when I really think about what we’re dealing with I can’t see a light at the end of the tunnel, at all.
The more I read up on what my husband may have the more hopeless I feel about what’s going on. Note: I don’t want to be that wife that diagnoses her husband when she doesn’t have a medical degree however as nobody will give him a diagnosis we have to move towards something and ABS makes the most sense right now. I read about people who are dealing with it (I really haven’t found anyone who has been cured of this) and it just seems like an unending process of trying to get help and trying to get a diagnosis.
Here’s the issue: Auto Brewery Syndrome (or Gut Fermentation Syndrome) aren’t in the medical database yet so it’s not a “real” medical condition yet and that makes it nearly impossible to get anyone to be able to help you with this. I’ve read up on people dealing with this and they are all still trying to deal with it. I found a FB page about someone who has been going through this with her husband though they are also fighting the DUI he got because of it and she said they’ve seen 50 doctors and so far nothing has come of it. So as you can imagine, it feels impossible. Of all the medical conditions he had to have it has to be one that nobody believes.
Because of the court aspect he could be sent to jail for not paying child support and that is a crushing additional aspect to this situation, one I can’t even bear to think about because it’s simply too much. He may have to go to jail because he can’t pay for college and it kills him he can’t help his daughter but he was also pushed out of his daughter’s life years ago.
So right now we’re just taking it day by day and trying not to lose all hope but I miss my husband, I really do, I feel like he’s been gone for the most part for years now and I didn’t realize he was gone until recently. I just need a break, we need a break, because I don’t know how much more we can handle.