7 months update

Posted , 14 users are following.

I don’t even know where to begin really so I’m just going to write freestyle as the thoughts come to me, feel free to read if you want.

I don’t want to meet with anyone because I have nothing to talk to them about, it feels like a massive chore, I don’t feel the same in their company - I don’t enjoy it or look forward to it anymore. Meeting with people is too mentally stimulating which makes me feel worse. I feel intense anxiety about things I never used to even think about, like going to the shop or just being in public places. As a result I’m effectively a recluse, I’m becoming more insular and introspective. I don’t care about anything, I’m apathetic.

All I think about is my illness, it’s like that’s just who I am now, I’m no longer me, I’m just the guy who’s ill. Nothing matters to me anymore. Someone hit my car? Doesn’t matter. Lost £100? Doesn’t matter. The only thing that matters to me is getting better and everything else pails into insignificance.

I can’t do anything that I used to enjoy, go out, socialise with friends, have a relationship, I can’t drink, can’t work, exercise, go to the gym. My muscles are withering and I’ve put on loads of weight, I look terrible in a mirror which makes me even more depressed. I used to deal with feeling down by doing all of these things and now the fact I can’t do them makes me feel worse than ever. I used to be really active, but also enjoyed watching tv, playing games, and reading books. In short, all of those things you do when you have a spare hour or two. But now those spare hours stretch endlessly before me and I’ve tried many things to occupy my time and I’m sick of all of them. I just sit watching the tv all day or play computer games because that seems to make time go a bit faster. In the game I can at least live vicariously through someone who isn’t ill. I’m jealous of everyone who isn’t ill. 

When I do meet people I try very hard to appear as normal as possible which requires even more energy and eventually makes me feel worse. I’ve tried gradual exercise and pacing myself but it just doesn’t work. Even standing and walking around the house makes me tired, on loads of nights I lie in bed with painful legs even though I’ve done virtually nothing, it feels like I’ve walked 20 miles. I have sensitivity to bright lights and loud noises make me wince on occasion. My head is constantly swimming with a weird spaced out feeling, it’s a dull ache that’s always there, brain fog is what it’s called, though it has so many facets and it’s such an abstract feeling that its nearly impossible to describe. My brain doesn’t work as it did before, I can formulate thoughts and I know what I want to say but the words don’t come, there have been occasions when I stop mid sentence and completely forget what I was trying to say so I stand there like an embarrassed pleb. On other occasions I slur my words, my mouth tries to compress all of my thoughts into the shortest possible sentence and I’m powerless to control this. I feel like a different person. And this makes me want to see people even less.

I’ve lost my graduate job which I worked very hard for, I was supposed to start on 3 September but there’s just no way that was going to happen. It was a once in a lifetime opportunity and it’s gone, though I’m starting to not even care about that. I got the job back in February which is around the time glandular fever took hold. These six months before I started should have been the best times of my life, dream job sorted, casual work up until then. I wanted to go on holiday, have fun on the weekends, see girls, go cycling and just make the most of my last summer before starting work in the real world. But no, I became ill. No matter I thought to myself, I’ll be better in a month or so. I’ll be better by summer. I’ll be better by the time my job starts. These aims came and went, as well as dozens in between. 

Now I’ve pretty much lost hope that I’ll ever get better. Is this how it’s going to be for the rest of my life? I’ve stopped making plans now. My mindset has changed from “Im going to do that when I’m better” to “I’m going to do that if I get better”. 

Sleep doesn’t come easily for me, I’m not one of those people who can nap during the day. Even when the glandular fever was at its worst I couldn’t sleep during the day, and now I still can’t sleep which probably isn’t helpful for my recovery (if you can call this recovery). 

Not expecting any responses, I just wanted to vent. Thanks 

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  • Posted

    Omg thank goodness I found this forum ! I’ve been going through this 6-7 months now . I had no clue what is was for this first 6 months ! I thought it was just hormones as I’m 52 . So even dead tired I pushed myself for long arduous workouts and always felt better afterwards now I realize I was probably doing more harm  than good . I have EPV reactivation and basically diagnosed myself and blood tests confirmed it . 

    I’m not a cryer but boy I’ve shed some tears punched walls and screamed at God . Recently divorced this was just not the time ! I live alone with  no family around so it’s been months of just watching tv with the occasional evening out if I’m having an ok day . Total hell wouldn’t wish this on anybody 

    • Posted

      I can completely relate to what you just said. I’m going through a divorce with this horrible virus too. Your not along. Be strong it will get better. 
  • Posted

    Surprised the doctor said it might take years....not a very encouraging answer to make you feel positive. I know doctors need to be honest...but no one can forecast what might take years. From reading this forum, you can see most stories it's usually 6 months to a year of feeling dreadfull and the 2nd year of making good progress to get your life back to normality.

    • Posted

      Yes we have to go by the general consensus which from reading on here seems like 6 months is the turning point . I hope this is the case as I’m at my 6 month mark .... doing EVERYTHING I can at the moment diet supplements taking it easy ... 
    • Posted

      I didn’t start seeing a turning point until 8.5 to 9 months. 
    • Posted

      Hey Lori / Dodge / David,

      Although some people do see improvement after 6 months, this is in no way definitive. For me it took 10 months to see a major turning point, and time after that to get my full strength and confidence back. Everyone is different and don't want you to start worrying or panicking if after 6 or 7 months still not seeing much happening - it went that way for me but it didn't take years like this (ill-informed I believe) doctor has maybe said - so don't listen to him and remember you are going to recover. Although again a timescale cannot be put on these things as it's different for everyone, I would say a particularly common window that some major change and improvement often happens is in the period of 9 to 15 months. Again though that's just from observation of reading lots of stories of different folks, hoping it is much quicker with you guys and thinking about you still! 

      Craig

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