TLDR at bottom.
Hey guys, coming here for some support and commonality. My condition has progressed at a scary rate since I had my child almost 3 years ago.
I’ve done PT, seen a plethora of specialists, the whole shebang.
I went from consistent, moderate, back and shoulder pain, to debilitating, severe, back and joint pain, especially my neck and coccyx area. Extreme muscle weakness, and chronic, “running in a nightmare” type of fatigue. Trying to run against the pulling back of a wave type of fatigue.
I can’t stay upright for long, or my head feels like a cinder block, I feel pinching and compression along my spine. It’s just not good. I feel claustrophobic in my own body. The fatigue and dysautonomia makes building muscle pretty much impossible at this point.
The yoga permanently messed up my wrist because I didn’t know I was hypermobile at the time I was doing it religiously.
I feel like I’ve hit a wall. I feel agoraphobic.
Counseling sucks, it’s just picking at the wound every week. Physical therapy sucks, it just makes me feel vulnerable and germy without any payoff.
I’ve got bulging discs. I’ve got MCAS. Debilitating migraines that last for days, and insomnia that is beginning to take an incredible toll.
After my diagnosis I went full throttle into every doctors appointment, trying to get help and get better asap, gave myself medical burnout and anxiety.
Over the weekend during my 4 day migraine my husband went on an all day hike with his work friends. Wouldn’t bother me so much if his mother wasn’t so willing to watch the children, and he made some sort of plans with me. But I’m not his suited to his preferred lifestyle like hiking mountains.
Last night I was sleep deprived and fed up with living in squalor. At least once a week for 8, going on 9 years I’ve asked for more help around the house and been pacified by false promises. (Long time to be duped, I know).
He came home late again yesterday, phone off and unreachable, (no infidelity conjecture please- not here for that) and when I gave him an exasperated “really?” At the door, he starts slapping the wall and cussing at me. I disengage.
Anyways the dust in our bedroom has gotten so bad I know at this point no one is going to clean it but me. I am tired of asking for help when it’s common knowledge now that I need it.
So I get to work, and he gets mad at me for doing it right before the kids bedtime routine. If he hadn’t been late home I would have done it earlier.
So I finish up and put the toddler to bed. Afterwards I go downstairs to confront him. He says he understands my disability but he can’t even fathom, if he did, he wouldn’t act the way he does. He wouldn’t spend every day trying to get out of the house as soon as he gets home from work to go do something or other, instead of spending time with me on high pain days, or playing a board game.
It hit me like a wall last night, none of it will ever change. He will never stop running and I am trapped. He will never be content and I’m barely holding on to the will to live my life. I am merely existing.
He doesn’t care if the house falls into squalor because he doesn’t spend time here. Meanwhile I am a prisoner in my body, a prisoner in this house taking care of our babies as best I can (not good enough for him) while I’ve put him and his career first for 9 years, being his emotional support person.
And my husband called me *codependent* last night. I’m sure all of you can imagine how that made me feel as a disabled person.
And every point I brought up he deflected so hard, i really wondered if he was truly stupid or really manipulative.
He was supposed to be home on time today so I could go to school m, because I’m trying to go back to college to relieve some of our financial stress, but guess who came home late? And he vehemently claims I live on a different planet if I feel like I’m “trapped”. I’ve spent the last 2.5 years staying at home with our child to save us childcare costs. And he’s wondering why I’m still upset over it today.
And yes I’ve asked for marriage counseling, I’ve pushed for every option. I have no financial independence so I truly have no final say.
I’m just here for a lended ear. I have no one who understands my situation. I think I just need an internet hug.
If you made it this far, thanks for reading.
TLDR; husband thinks my disability is codependency.