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
0 likes, 65 replies
dominika20801 will_53771
Posted
I’m around 7 months in too. I’ve had ALL the same feelings as you. When you are sick nothing matters except getting back to health, and that is completely normal. All the things that I loved doing, even reading, I could barely concentrate on. Brain fog was horrendous, I also found it hard to formulate thoughts and sentences and constantly forgot what I was about to do or search up on my computer as well.
For the first couple weeks I did not sleep well at all, and like you I can’t nap during the day so each day would seem so slow since I could only sit in bed and try to concentrate on watching television or attempt to read a book.
This virus gives anxiety and depression to even the most lively and positive people, and I promise you that even though your thoughts and mind seem to be in this horrible dark cloud, it will not last forever. Those thoughts are not true! You need to remember it’s the virus speaking, and it loves feeding off the negativity. It is easier said than done, but i know it helped me thinking about that.
I really hope you see a turning point soon. I am 7 months in like you and though I am getting much better, I still have ups and downs. For many of us it takes quite long to fully recover, so don’t be discouraged please, It will come around.
will_53771 dominika20801
Posted
craig07920 will_53771
Posted
Hi Will,
I know words can justify or fully describe the kind of pain and hurt that you have been going through with this awful illness you have been going through, I want you know that I empathise having been through this illness and other hard times and dealing with the same awful depression and emotions which I wouldn't wish on my worst enemy.
It is only understandable that you have been feeling how you have been Will. I do want to reassure you that although it feels right now like hope is gone, believe me there is hope for recovery Will. After 6 months I was in quite a similar place to you, so tired and weary of feeling this way, lost enthusiasm for life and confidence, frightened and worried and not seeing any major improvement in my symptoms. Having to cope day on day with the awful physical symptoms as well as the mental strain I know is only too draining and horrible. It took me 10 months for a major breakthrough and turning point to come - I want to reassure you that your breakthrough will still come Will, I know it's impossibly hard when you can't see that happening and feel like it's just going on and on the same way - this is classic mono Will but absolutely your body DOES recover from this with time. It is a traumatic and awful experience to go through, I was like you thought there was no way by body resilience could come back again after this, but it is amazing how it does Will, and it is very normal still to be at this stage after 6 months. I do believe that by far these are the worst 6 months you will go through this with, and even if it takes a little time for full recovery still, please please know that full recovery WILL come. God is a great healer and I truly believe you are going to be well again.
I'm so sorry to hear about your job Will - I still trust that God has amazing and good plans ahead for you, and that at the right time the right thing will come up again. I do totally get it it's like a grief when you're so isolated and feel like everyone else is able to get on with their lives - this virus causes so much pain and hurt and just really hope and pray that things can settle and for your breakthrough to come soon Will. Hang in there Will, things will get better, I know that doesn't probably help much right now and all you can do is cope with each day and please do talk to any family / friends you really trust about how you're feeling right now, it's too big a burden to carry yourself Will. I know it's hard for others to understand, but those you can trust will understand and help I really hope and pray.
Absolutely take no notice whatsoever of what that doctor said to you - that is absolutely appalling and he has no clue about how this virus can affect you for an extended period. In no way is this in your or anyone's head and for someone in such a position to say that is totally shocking. Anyway put all your energy and focus into recovery and not giving time to folk like that who are totally unhelpful and uncompassionate.
I definitely think you're being WAYYY too hard on yourself Will. What you're going through is a horrible experience and it is not your fault and you mustn't beat yourself up and please do be more gentle and compassionate and understanding to yourself right now. And remember because you've had to take a step back from things right now, that doesn't mean to say you won't get back to things in the future and make a full recovery - it just takes time Will, but you absoutely will get better I truly truly believe that from my own experience and reading the experiences of many others on this forum - it can take time, it is normal for it to take more than 6 months for recovery but it is equally normal for full recovery to come after an extended period.
Hang in there and thinking about you, message any time and you can private message me too any time if you are feeling things getting on top of you too much - I do know what it's like Will and it's so scary and terrifying - but absolutely remember no matter how hard things feel or seem today, this is temporary in the grand scheme and things and you ARE going to get through this and be healthy and happy and active again - I trust God with that.
Craig
will_53771 craig07920
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craig07920 will_53771
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Hi Will,
It's because I know and remember how deeply I struggled and suffered when I had that virus that it's important for me to come on here and reassure and encourage others that there is hope and it does get better - it really changed my life and I was so grateful for the mercy God had on me as things started to get better. I truly believe you are going to get better Will, hang in there for now is the message, I posted a link of a great healing testimony in a message to Van further up it's worth watching for sure when feeling down (not mono related but shows God's amazing healing power and grace).
Remember message any time not feeling great man, your words really touched me and I related to many of them from when I went through the virus, and for some other situations I'm dealing with at the moment. Thinking about you and hang in there - this DOES get better and you ARE going to get your life back again - trusting God with that.
Craig
kaymono will_53771
Posted
Hi there,
I feel your pain. i am now 13.5 months in since symptoms started but I only got tested for ebv 2 weeks and got a diagnosis last week! So for 13 mos I was lead to believe it was all in my head as all the tests done came back normal. My results showed I had both ebv and cmv in the recent past. The symptoms I had were as per below:
extreme fatigue
muscle and body aches and pain
dizziness/unsteadiness/unbalanced
nausea
brain fog
terrible insomnia (for about 3 or 4 months I could not sleep more than about 3 hours a night)
night sweats
anxiety
blurred vision and floaters
poor concentration
lower back pain
stiff neck
I found insomnia the hardest symptom to deal with as with only 3 hours each night and then having to get through a 9 hour shift at work the following day, it was like torture. I am not going to lie, for the first and only time in my life for those months I was experiencing insomnia I can also confirm I had suicidal thoughts. I therefore decided to see a therapist.
Now the sleep has improved for the most part though the last few nights have been not so great. At the moment, it's the fatigue and anxiety that are the main nuisances though I must admit they are a million times better than they were about 6 or 8 months ago. I am so looking forward to the day when I am symptom free. This zig zag recovery can be very distressing at times as at least once a week I feel like I am having a relapse.
Sweebee kaymono
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kaymono Sweebee
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Bless you Sweebee.
I wish you a speedy recovery. Mine is not even active anymore but still giving me grief. The doctor advised I am going through post viral symptoms and he has no clue when I will be relieved - it could be years he said. I just have to let it run it's course. I am having one of those days today where I woke up feeling like I have been run over by a truck during my sleep, almost like I am coming down with the flu. I so did not want to get out of bed this morning. Two years ago I was running a half marathon and now I can't even walk 3 miles without feeling the effects after. I so need this to be over soon so I can resume my life as it really has been put on hold for the past 13.5 months.
If nothing else, this whole experience has taught me patience. That's the only positive I can see in all this.
lori93950 kaymono
Posted
I’m a runner too and just walking instead of long runs is so hard for me to do . And yes I kept saying I’ll be better by this month this week ... now can’t plan anything and watching the seasons go by has been so tough .
lori93950 Sweebee
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I think I’ll always be scared of pushing myself doing normal things in case it reactivates.
lori93950 kaymono
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kaymono lori93950
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The running side has bn hard as a large number of my friends were from the running community and as I had hardly ran in the past year, i don’t feel I have anything in common with them anymore.
kaymono lori93950
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lori93950 kaymono
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About 5 months really bad and 2 months before that just mild symptoms . Yes the friends start to die off when you’re not all healthy happy socializing . They forget about you 😢
craig07920 lori93950
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Lori,
I felt the same as you - I remember hitting a phase 9 or so months in thinking okay, I'm still not great and improvement had only been minimal, and I'm going to have to get used to a new 'normal'. You can't see any way when in the midst of it that your body resilience will return again, I know I felt that way for sure.
But it does Lori and it will. The power of this virus absolutely will be broken - your body does get on top of it and nullify it after time. Recovery with this can be a very unusual road, it can go on for months and months at the same horrible level without much improvement, then a big step forward can take place in a short space of time. That happened for me and I've read it happening for a lot of folk. Don't get me wrong it wasn't like an overnight thing or whatever, it still took me time to get back on my feet again, but life became more bearable and my body strength did return along with a better mood and new hope because of it.
Your confidence will return Lori as you start to see improvement - it's just right now it's hard to see that because nothing seems to be happening - but you will get through this and your confidence to do things and be active again will come back over time as your body recovers.
Craig
craig07920 Sweebee
Posted
Hey Sweebee,
Was wondering how you are doing, you have been as much of a support and rock to others on the forum as anyone despite what you've been going through this last year. For a doctor to say it's in your head makes my blood boil, for any doctor to make that reckless judgement about anyone's condition, especially mono for which if they bothered to do any research on they would know can take such a time to get over, is a total disgrace. I've had my share of runs in and battles with doctors over the years too and can empathise, but I'm learning as I get a little older and hopefully wiser that it's better to channel that energy into recovery rather than bothering about folk who have been no help or showed no compassion or understanding!
Anyway that's my rant over I didn't mean to start on that issue!! I hope you are feeling settled Sweebee and seeing some signs of hope and improvement, remember this is going to be YOUR year of recovery, I'm still believing that!
Craig
kaymono craig07920
Posted
May I ask how long it was from the moment you started having symptoms to when you felt completely normal again?
lori93950 craig07920
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I’m trying to do everything right ... rest good diet and ALL the bloody supplements which I have to take . That’s the best I can do and yes just a test of patience and a waiting game .
I’m so happy you are feeling better and your kind wise words give us all hope !! 🙏🏻
lori93950 craig07920
Posted
Yes Craig my family dr said EBV is bogus ... bogus !!! If you are sick and your life is limited it’s not bogus ! I’ve learned so much about this illness and the fact that there is no real cure really shocks me ! 😲
craig07920 lori93950
Posted
Unbelievable for your doctor to tell you that, mines told me the old text book one that seems to be common with doctors that it's a nasty virus but you will recover within 4-6 weeks or 6-8 weeks, when in reality for many adults it takes longer as we know (not saying that some luckier people don't recover within that time scale mind).
Oh it's not about thinking about it as something that there is no cure for, it's just about remembering and knowing it's a virus but it gets better. Just like a cold is usually caused by a virus, they might not have a cure for the common cold but it's not a major issue for most generally well people because within a week or two often it's better. Try to think of it as the same with this virus, just that the recovery period unfortunately is a good bit longer than a cold!! But the end result is the same that your body gets it under control and ultimately cures it within itself so it cannot harm you or make you feel unwell anymore.
Craig
craig07920 kaymono
Posted
Hello Kay,
Well it was 12 years ago now so it's hard to remember exactly everything that went on but I do remember the key time scales. I started to feel a bit strange in the September, started to feel really unwell in the October and it was at the end of that month I got the blood test and diagnosis. The first 6 months especially were awful, the intensity did lessen a little after that but not anywhere near where I felt like it was getting better to a reasonable level. I remember it was the next August that something seemed to happen when I started to feel a difference, as if it wasn't quite as severe and could do more things. But I would say most definitely it was into the second year before I started to feel a good bit better, and even then you knew your body was different to what it was before, but it does come all come back with time. It was gradual but by 18 months I had certainly recovered to a point where I could in the main live a healthy and normal life again, although again looking back another year down the line I felt even better, and so on.
I know that's a bit of a long winded answer to a simple question! At 13.5 months I am certainly hoping and believing that the worst phase is behind you, and this is going to be your year of recovery
Craig
lori93950 craig07920
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I hope I can too one day ....
lori93950 craig07920
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But good news to think of it like a cold .
I already have PTSD after a very bad accident so coupled with this off feeling .... it’s a lot to manage .
craig07920 lori93950
Posted
Lori it was really these first 10 months that were dire, I did really start to recovery after that and gradually got better and better through that time, so don't want you to think that it's going to be so long feeling so bad - very much believing and hoping that won't be the case with you!
Very sorry to hear about the PTSD following an accident too, having to cope with this on top of other things is so hard. Hang in there Lori a breakthrough it on its way I do believe that.
Certainly your physical fitness or proneness not to getting colds or flus or whatever doesn't seem to be a factor in who this strikes - there are some well documented stories of super fit and active sports people struck down with this - the recent one that springs to mind is Mark Cavendish, the famous Tour de France rider from Britain who has had to take time out of the sport because of EBV.
Craig
lori93950 craig07920
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Yes Craig I’m reading a lot about top athletes getting this including many famous tennis players . They get the best nutrition and support from specialists so yes you’re right it’s nothing to do with how healthy you are .
I will in future Keto my immune system strong and forever take Lysine .
I did work out like a maniac this past year and maybe should have taken a day off here and there 🙄 but I didn’t ... lesson learned !!!
craig07920 lori93950
Posted
Yeah that's right Lori I remember reading about some tennis players, Mario Ancic I think was one a top player from the 2000s. There are some footballers too, Scott Parker the English footballer had this virus and managed to come back to the top level after it, there is hope!
lori93950 craig07920
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kaymono craig07920
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Hi Craig and lori
Very interesting article here of another athlete who suffered this illness
[b]https://www.dailymail.co.uk/health/article-1303098/Olympian-Roger-Black-beaten-Epstein-Virus[b].html
craig07920 lori93950
Posted
Ah great Lori your uncle works for Manchester United, oh absolutely it will only be the best of the best there! I did the stadium tour there one time and enjoy watching them play on the tv!! I'm from the UK also, from Scotland.
Sweebee craig07920
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craig07920 Sweebee
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Hi Sweebee,
I had blood tests at various times during that first year as I recall. It was only the first one for me that showed positive for mono, and then all the other ones after that showed as normal (past infection perhaps not sure). That must be so frustrating not to have that firm diagnosis, for sure it is worth asking the doctor to do that for I think they can at least tell if you have had a past infection of EBV, also maybe worth asking to test for CMV as well as that's the other less common main virus that causes mono I think. Maybe if you were to get a blood test and it showed past infection for EBV it would give an explanation and hopefully put your mind at rest, but I know these things can work the other way too and cause more questions than answers sometimes, it's so frustrating.
Hoping that you are feeling okay Sweebee and managing to cope with things at the moment and that the summer coming in there for you can bring the start of true and meaningful recovery - thinking about you still.
Craig
craig07920 kaymono
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Thanks Kay will have a look at this link about Roger Black!! I didn't realise that he was affected, I am a big fan of athletics and used to watch him a lot!
kaymono craig07920
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From reading the article it seems it took him abt 18 months to get back to the level he was prior to the illness. So i guess there is hope for me yet.
craig07920 kaymono
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Definitely there's hope, and he won the Olympic silver after that! in 1996 probably his best year!!!
lori93950 craig07920
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Yes Craig ! Gives us all hope that things can get better and the fact he went on to do better than ever ... inspirational 🙏🏻
kaymono lori93950
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Don't worry lori.....we are both on our way to recovery. I know it does not seem that that at times, but I am confident we will get there and this thing just has to run its course.
Sweebee craig07920
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craig07920 lori93950
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Absolutely Lori, those kind of stories are the ones that can really offer hope!! Just knowing others have been in the same place as you and made it through and out the other side can give you a boost - and it didn't matter that Roger Black was successful in his sport, famous or probably relatively well off financially, he still struggled with this thing and took him a while to get back on track (excuse the pun!).
craig07920 kaymono
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craig07920 Sweebee
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Thinking about you Sweebee, having a tough day or two myself feeling a bit overwhelmed also, hoping that God can help us and settle us this week. Hang in there Sweebee, things will get better with God's help.
will_53771 kaymono
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Sweebee will_53771
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kaymono will_53771
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I am pleased for you that you have had the full support of your parents and you could take time off work. Unfortunately I was not in such a position. I am living in London whilst both my parents are retired and living in Jamaica and my sisters live in Canada and America. With a mortgage and other bills to pay, not working for an extended period of time would not have been an option. If I had received a diagnosis back then though, I am sure I could have spoken to my boss and request some sick time off but with no proof of a diagnosis, they all would have thought I was mad. I think they all thought I was a hypochondriac anyway because I was telling them all the time that something was not right but all tests were fine. There were about 6 months from about August to February when I was at my worst and could needed someone to tell me to take some time off. Unfortunately through this whole thing i have learned that alot of people only care about themself.
lori93950 will_53771
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You’re right unless you’re going through this ... they have no clue .
I too don’t know how people go to work during this time .. I had to turn back from an appt yesterday as I felt so damn awful. Faint anxious tired.... and the list goes on. I just could not make it there. Improved as the day went on ... mornings are the worst .