Have posted on here before but need to hear some love and support.
Basics :symptoms for 10 1/2 yrs, DX 6 1/2 yrs ago, doesn’t tolerate meds or med changes. Kids aged 10 and 11. Has spinal issues on top of PD
So, hubby has really found the last few months hard to cope with.
- He hasn’t eaten properly since the end of April since he had what I thought was a dramatic stomach bug, but haven recently spoken to his PD nurse may have been overflow
- his sleep is all over the place. Sometimes he is asleep at 8pm, some days he’s asleep 18+ hours, some days he can go with only 1hr sleep in 48 hours. All days awake at 4am
- he will not leave his xbox/tablet games alone. He’s really vocal and sociable with the people on them but barely speaks to me or our kids… he falls asleep playing the game and gets quite defensive if I try and take the handset off of him because he is asleep.
- REM sleep is all over the place
- he is complaining of feeling like he is losing control of his hands
- hasn’t left his bed other than for toileting/washing since April, before this would only get up to eat his dinner.
All of this, on top of working full time, looking after our kids and house is draining on me. I can’t remember the last time he spoke to me as a wife, looked at me as something other than his servant.
I have no desire to do anything in the house or with the kids, I can’t be bothered to do anything I love doing - can’t remember the last time I read anything. I need to decorate the lounge, weed the garden, wash the floors etc but have no energy or will power to do it. TBH I feel like I’m losing myself.
I have no relatives around who can help nor friends. He won’t let people in, refuses any help from anyone and argues with me when point out he is asleep playing his game/eating etc.
I don’t know how much longer I can do this all.
Note:I spoke to the PD nurse yesterday who thinks his symptoms listed above are bowel related, but that doesn’t help with me. Everything I do is linked to him or the kids. I’ve struggled to move my arms this week because I am so worked up/run down etc that my shoulders have gone into spasm .
I know you will all say I need to go to the docs, but I can’t see how that will help - I cant be signed off, I’m one of the few members of my team who aren’t on mat leave, tablets don’t agree with me, if he wont accept people in the house, I can’t get support. If I suggest that I go and sleep in the lounge he gets arsey, so I’m in between a rock and a hard place. My work has offered me counselling but I need a target to work towards to allow me to access it - wtf can that be??? The kids go back to school soon and I haven’t even got before and after school care so I can do my job around them because of the COVID rules - the whole universe seems to be conspiring against me at the moment.
Sorry to offload like this.