Had a rather rough morning and need to vent.
Back story: My DH has a long list of medical problems. Physically, his left side basically doesn't work from knee to shoulder, he's in constant pain, has to use a cane to walk and the right side is starting to wear from compensating for the left. At least a few times a month his legs and/or back give way and he falls. He also has mental health problems that leave him confused, disorientated, forgetful (I always have to check the oven after he's used it to make sure he's turned it off as he has repeatedly forgotten it) which is brought on by stress. That's the basic stuff that really causes problems in his day to day. He used to black out (just keel over with only a few seconds warning, less than a minute unconscious, take 30 minutes at least for him to be really there though) but hasn't done that in 5 years.
He has a major problem getting taken seriously and getting told one thing and another going in his notes. We've had medical staff fully admit that they weren't going to take it seriously until they learned what caused it (they thought it was a 'self-inflicted' injury such as a motorcycle or sporting accident, my DH's back was injured in an assault he survived as a teen and everything physically at least stems from that). My DH is currently looking for work after losing multiple jobs to his health (he can't physically keep up so he needs a sitting job, but he gets confused on the phone so that leaves out most desk jobs). He's tried so hard recently to ask for help, rather than toughing it out, has two lovely physiotherapists, but the GPs at the practice, except for one, all treat him like he's just playing sick (and we can't ask for the one, so it's luck of the draw). The looks, the comments about how a man his age shouldn't have so many problems, the appointments for stuff getting dropped and this place is actually better than the last. At the last, the GP told him that he wouldn't forward my husband onto mental health care because my DH wouldn't talk to the GP about his parents. He had one member of the mental health team tell him that he knew what was wrong but he would tell DH in case it upset him (this really set him back and is only now going back for help in this area). There is nothing about it in his notes according to anyone we've spoken to about it afterwards.
Now to today - DH went in this morning and came home very distraught. He was told that the physios had been dropped and would need to be rebooked for him. He wouldn't look at DH's navel which has been bleeding on and off for a month because, he said, if it was an infection it would bleed constantly so it can't really be a problem.
The big bomb however was being told that my husband's notes from his surgery back in 2004 (keyhole exploratory knee surgery) said that my husband's ACL was only loose. We both remember being told after the surgery that his ACL was torn and reattached partially at a right angle and being shown pictures of it . My husband said me remembering it is the only thing keeping him from thinking he's lost it (forgetting the physios finding mechanical damage in his spine and complete lack of support in his knee). The doctor implied that the issues were all in his head and my DH was borderline thinking he's right but now is just upset and depressed that he knows something is wrong, he feels it every day, and can't prove it. He's worried he has hypochondriac all over his notes. I'm enraged on his behalf and want his records right here, right now, because something is not right & I'm fed up with the games.
It just feels like no matter what it's one step forward, a mile back. Even when not related to his disabilities -- he's been trying to get the snip since January. One of his tubes is odd so he has to have it up at the hospital, and since finding that out they keep just telling him they'll call back later with information when he tries to chase it up. It's like a wall.
Thank you to anyone who read all of it, I just feel upset and hopeless and hope another pair of eyes might know what is going on or what we're doing wrong.