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

    Hello! I caught the infection about 2 years ago. It was hell for the first year, close to hell for the next half a year and I felt close to normal in the last 3-4 months. I still get some symptoms but I can easily go to work and enjoy life. I've been in the hospital several times for a few weeks each time in the first year and a half. The doctors weren't so understanding because they didn't find anything that bad in their tests. I was asked to take psychiatric medication and to "get it out of my head" a lot of times by stupid doctors, but I knew it has nothing to do with it. I just waited it out, there was no other option. Not even prayer, since I don't care for fairtales and magic stuff. Best bet is to wait it out, spare yourself of effort when possible. Another thing is that supplements didn't help me at all, got rid of them a few months in, especially when looking up the studies that show they're garbage, most of them even dangerous.

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    • Posted

      One doctor told me it’s all in my head and to get on with my life, I swore in her face and walked out lol. 

      I went to a specialist last week and he told me to do the paleo diet and gave me a s**t load of vitamins like b complex, b12, C, mangnesium malate and this thing called ATP fuel. It’s all making me feel worse tbh.

      Anyways I’m glad you’re back to a normal life, at least it’s possible. 

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  • Posted

    Reading your post made me so sad. It reminded me exactly of what I went through. That apathetic phase, where I stopped caring about everything because all I wanted was to feel better. I also became a recluse and the thought of being in company (besides my immediate family) made me feel anxious and I simply wasn’t interested.. it seemed pointless and I didn’t have the energy! What would I say? I wasn’t myself... 

    I was that way for 6 months.. then it’s like over a weekend my body seemed to get a hold of it. Not perfect. I still got tired and had to return to work gradually only a few hours twice a week first, then half days two months later, then some half and some full days, now back full time. 

    When I was at the 6 month point I felt so helpless because nobody believed me. Doctors, husband, family, friends.. they all thought I was having a psychotic breakdown. It literally felt like my world was falling apart not only was I very sick, I was alone with how I felt. Nobody did it intentionally.. but this is a very strange virus and most people feel better much sooner. The medical tests showed nothing, yet I felt like I was dying or had something very insidious. I really, really feel for you.

    Please give it a few more months. During my time of illness, I scoured many forums and many people felt no improvement for a year.. they lived through constant hell. Then, they started to feel better very slowly. 

    Have you improved in ANY way? Are you able to do house work for slightly longer than you were months ago? Is watching tv less mentally exhausting? That’s how I had to cheer myself up. At onset TV had to be off because it over stimulated me and made me feel so weak. I couldn’t even understand what was happening on TV! After two months at least that improved, even if I was still very weak. For your own sanity, try to make a list of silly things that seemed to have gotten better.

    Hang in there! I believe you might be one of the unfortunate few who take longer, but you WILL heal! 

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    • Posted

      Thanks for your response, I know the 6 month mark is a big thing for this virus as a lot of people start to feel better around this time, the specialist I saw last week actually won’t see patients until they’ve passed the 6 month mark.

      In a weird way it’s some comfort to know that you felt similar but at the same time there’s been literally zero improvement in the last 5 months and things actually feel worse (probably because of my mental state).

      Is there anything you can remember doing/not doing around the time you turned the corner of recovery, I’m desperate for anything haha, thanks. 

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    • Posted

      Hi Will,

      I tried acupuncture and cupping, I don’t know if that helped but I did feel better for a few days after. I think sloooowly trying to do more whenever my body allowed it. As soon as I felt I wouldn’t collapse grocery shopping, i went grocery shopping. Sometimes I would drive to the store that’s 5 mins away, and I’d have to rest in the car to muster the strength again to go in for 10 minutes. It was crazy. So the only thing I can say is listen to your body and when you feel slightly better, do 5% more. And then rest. 

      I think meditating helped me a lot. Lots of guided meditation on YouTube. I know. I rolled my eyes too when other people suggested it. Try “healing guided meditation” on YouTube. There’s a good video with like candles as the video pic. Try that one.

      Other than that, we went away on a mini vacation one weekend.. and I walked more than I thought I could which made me anxious and in the moment it sucked. But after that weekend things improved at a more rapid rate. 

      I went from being bedbound  and visiting the ER like 8 times over the course of the  virus in addition to many family doctor appts. 

      PS! I was never formally diagnosed with mono, by the time I got tested it showed past virus for both EBV and CMV. But I know it was mono because of the symptoms and duration. Doctors suggested CFS but don’t believe that baloney because I KNOW by the way I felt and by talking to other people that my experience WAS mono. It just wasn’t tested in time (I was feeling sick since September but it was milder so I kept working thinking I kept coming down with flu after flu... I only got tested in December which is obviously too late for active phase markers).

      Take care  

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    • Posted

      Hi, I did go for some acupuncture but it made me feel worse so I binned that. As for the meditation I gave that a go too for a few weeks but again that didn’t help, maybe I’ll try it again as it’s been a while.

      It’s so hard to know how much exercise to do because the last thing I want is a relapse, I was doing about 5-10 minutes walking every day but I’ve stopped that because I’ve been told to do absolutely nothing for a while. Maybe I’ll try building it up by a minute every week, and see what happens. Cheers 

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  • Posted

    Oh man I’m so sorry , I can tell you I went through the SAME thing. I’m at 8 1/2 months with this horrible virus and still sick. It has wreck my life completely too. My wife just couldn’t understand what it has done to my health. I was a healthy very successful guy before this horrible virus. To top it off I’m going through a divorce after 24 years of marriage. I’m not going to go on and on with a pity part , nor do I want anyone to feel sorry for me. Its life and it will go on. 

    What I can tell you has happened to me is I’m starting to pull out of this now. I’m finally starting to have a few full days in the week where I can function and accomplish things. Then I have a few days of feeling like crap stil. Over all I’m slowly getting better. This virus is a slow slow recovery. You will not see improvement in days it’s more like months. You will recover and get your life back. I know I will return to a normal life in the next year. Remember things happen for a reason. Take this horrible experience and make the best out of it. It will make you a stronger, better, happier, more greatfull , better person when it’s over. You have to stay strong and not loose sight. No one will ever understand what you have been through unless they have had this horrible virus. Stay strong and be positive Will you can kick some butt on this virus if you stay strong and don’t let it win. 

    I sincerely hope the best for you !! It will get better it just takes time. Hang in their.

    Dave. 

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    • Posted

      Thanks Dave, I see where you’re coming from when you say this will make me stronger. When I’m better nothing will phase me again, this ordealwill have been a very humbling experience.  I’m sorry to hear about your marriage, my girlfriend left me and I honestly can’t blame her. I’m not comparing the two as we hadn’t been going out long, but it just goes to show that life isn’t fair but hopefully things will come good in the long run. Keep on recovering.

      Cheers 

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  • Posted

    My relationship also went to the drain several months into this business. But it was agreed between the two of us, since we both couldn't handle it.

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  • Posted

    Hi Will,

    This miserable virus lasted a year for me. I felt a little down on some days for awhile after that. I had given up hope of ever feeling better, I am happy to say I am now recovered, this will happen for you too, it just takes a long time for the body to fight this virus.

     

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    • Posted

      Hi Will,

      I feel so much appreciation for every day, I am helping my daughter with her house remodel, a year ago that was unthinkable, I could barely make it to the patio for a little sun.

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    • Posted

      That is great to hear you are doing that for your daughter Mono, goodness knows your family has been through such a horrid time and just really hoping and praying things are looking up for everyone - still thinking about you and rooting for you and believing each one of you is going to be well again thanks to God.

      Craig

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