Wanted to get some stuff off my chest and figured this was the best way.
I have had really bad PEM since Christmas Eve, I had to do so many things that my legs were giving out and I had to go rest. I'm glad my family understood I needed to rest but why push me to do that in the first place?
I was doing okay for a while there, then that happened and I haven't left my bed since for anything other than to get food or use the bathroom and stuff like that.
I feel so exhausted that I've missed 2 therapy appointments in a row because I just couldn't get out of bed. I just can't function any more and it's stressing me out...I can't relax, and then my husband has a huge argument with his brother and everyone wanted me to fix it, but he wouldn't talk to me.
I can't handle all this, I've been sliding back down into my depressed, anxious self after several months of improvement at least on that front.
Then family tells me they think GET is the best option for me and want to have a nurse come weekly and do exercises with me. I hope the doctor doesn't agree to this, he hasn't said a word about GET so I'm hoping he's aware that it's no longer recommended.
Speaking of the doctor, my labs came back, seems like I tested positive for EBV, it's supposedly inactive but I think the theory about it partially reactivating might explain things. I'm hoping antiviral meds will help me, waiting to hear back from a specialist in infectious diseases to see what they think first.
I have to go to my next therapy appointment...I have to. I need to see my therapist and psychiatrist and talk to them about things before I lose my mind. But it frustrates me so much when I speak with the therapist on the phone and she doesn't seem to understand CFS, PEM, anything, hell she doesn't even know what EBV is. She's been very helpful to me otherwise, so I don't want to dump her completely...I just think I need to see someone familiar with these kinds of things.
The only thing that has kept me sane is playing Monster Hunter Stories on my 3DS. I added some people on another forum but nobody seems to want to play that with me...if anyone here plays it please PM me, I want to win trade for the DLC rulesets and stuff like that.
To sum things up, I'm upset that the support I thought I had seems to be eroding, I get people want to help but I can't get them to understand what they are doing isn't helpful at best and harmful at worst.
Furthermore...I feel invisible. Lost. The few friends I have I haven't seen or talked to since before Christmas. Not for lack of trying, at least on the talking part, but they just say they are busy, or will message me later and never do. Even though my husband is here I still feel so isolated and alone, because it upsets him that I can't play video games like I used to on PC because it's so tiring. Usually he's just playing in the living room and chatting to his friends. Sometimes he will come be in bed with me but he will be so engrossed in a mobile game that he doesn't pay much attention to me. I tried playing some with him but he's into those kingdom building type of games and I never found those fun.
I want my life back...I want everything to be okay again. I'm too tired to stay positive about all this.
A bit of venting.
Blog entry posted by Hikaru, Jan 5, 2018.