A bit of venting.

Blog entry posted by Hikaru, Jan 5, 2018.

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.
  1. Nightingale
    Hey Hikaru, I just want to say that you're totally fine to feel down sometimes. It does suck to not have the life you used to, and it's fine to vent. I totally relate on the friends thing. It is really hard to maintain friendships when you don't have the energy and they aren't understanding. Have you tried finding an ME support group? I have found connecting with people with CFS to be incredibly helpful. Even if you can't meet up in person, online like this is good too. Hope you feel better!
    Hikaru likes this.
  2. SueJohnPat
    I am sorry. The holidays can be a pain in the buttocks. Extended family does not get it.
    I had high igg titers for Epstein Barr. I took valtrex 500mg with celebrex200mg ( Celebrex boosts the antiviral effect of the valtrex. This resulted in a major improvement for me. I hope you can avoid get.
    Maybe try to watch Unrest , this caused a major breakthrough in my father understanding this.

    I am now making friends again after being ill for about 8 years. People drift away and it is extremely lonely but it is not your fault. For awhile I basically had no friends other than my husband and kids. I maintained a few long term friends but only could interact with them occasionally. Felt lonely but too much for me to pick up a phone. My health has improved to where I can maintain friendships again. Don’t blame yourself .just know it is not you and we have all been there.
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  3. Pen2
    Dear @Hikaru, I'm glad you can come on PR and vent when you need to. We all have these times that we feel so alone. I really don't think my family is ever going to get it. In fact, they get on me more that I should do more, get out more!

    So your family sounds like mine! My husband?! He's here but not here. I know he has alot on his mind but once in awhile he could at least ask me how I'm feeling. Nope, never does. I still love em. I really think he tries in his own way.

    We may be guilty of not telling people what we need too, we feel like a burden. At least that's me anyway.

    I hope your venting helped. I also hope you feel better soon. I have been going through a deep depression! I'm doing better now. But it still hits me now and then. ME is a hard life. Unfortunately it's our life. You know we on PR want to support each other so from me......vent Anytime!

    Hugs to you Hikaru, (rymes, not on purpose),

    Pen2
  4. alkt
    it is good to have somewhere to vent .with everything we have to endure the inability of most people to understand how we live with chronic illnesses is frustrating to say the least you could try emailing your friends and family with more info about p e m and other disabling symptoms. I hope you have better support this year.
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