A bit of an update

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So it's been about just under a month since my last post and I guess i'm feeling better now then I was at xmas...

That's not to say it's been uneventful I had what can only probably be described as a complete and utter breakdown around new years eve, in honesty I just couldn't stop crying I was just so depressed at how I was feeling. Mainly because early in December and late November (around the time of my first post) I was feeling the best I had done since getting mono (about 6 months ago) then i got a cold which brought me back down and everytime I get a major setback it gets harder rather then easier really. It's not even necessarily how the virus is making me feel (which is dreadful) because i'm pretty much used to it by now, it's just missing out on my life really. Like i'm in a band and haven't been able to gig with them since getting ill, i'm worried about university and if i'm still ill come September i'm probably going to have to leave because I can't see them letting me have 2 years off then continuing with the course, and just generally missing getting to spend time with my friends and go out and do things.

Speaking of friends... In my first post I said about how much of a good support structure I had. Well in reflection that isn't really the case. For my family it is after not understanding at the start they now completely get it and are 100% supportive. But it just feels like none of my friends really want to speak to me and i can go weeks without hearing from anyone outside of family. There might be the occasional message in a group chat or something but an actual conversation is very rare. So I had a massive go at them. Well first I snapped at the band, they'd arranged for a photoshoot thing for this single we've been wanting to release since last summer and they didn't give me any heads up about it and I just wasn't up for it at all and it was just the final straw and i went mental at them. Probably unfairly in hindsight but I was just so frustrated that none of them seemed to realise how sh!t this virus makes us feel and that if i cancel plans it isn't because I want to. Well eventually they seemed to understand and I'd calmed down and then other friends managed to get my back up aswell... I'd arranged to go the pub that's like a minutes drive from mine with a few friends to watch a football match because I was feeling pretty good, but after arguing with the band the stress had made me feel awful again so I had to cancel and they did what they always do and made a snide comment like "didn't expect that" which they all laughed at. It's like they think I like being the person who always to cancel? Like I choose to feel like this? Well they hadn't been supportive at all (because in fairness the band kinda has and hasn't) so i again went mental and basically told them all they're sh!t friends because in honesty they were. I think collectively between the 3 of them i'd been asked twice in 6 months about how i'm coping etc. Two of them ignored my rant but one of them messaged me saying he thought I was out of order then after having an argument with him he seemed to understand and apologised saying he didn't realise how bad it was, which I guess is fair. But at the same time it's been 6 months and I very rarely leave the house and had to take a year out of uni etc it isn't going to be good is it?

That was about 2-3 weeks ago now and I am back on speaking terms with them all. To be honest the way I went about letting them know exactly how I feel was probably quite argumentative and toxic but I still stand by it as they needed to know and some people just need to be told really. I don't hold any grudges over them as pretty much all of them had apologised, said they didn't realise it was that bad etc, and i get that people have their own lives and they're not constantly thinking about how i'm feeling etc, but it's not like I expect that. It would've just been nice to hear from them in the past 6 months.

Aswell after the discussion with the band they're going to be getting in a "temporary replacement bassist", which I had been saying they should do for months if they want to carry on gigging, but I think they've finally realised that I could be ill for a long time. Despite that I guess i'm still not happy with it, I worry that if i'm ill for another 6 months ( or longer) they'll just kick me out and get this other guy to be the permanent bass player, which I mean I wouldn't blame them but it is still an unpleasant thought. And now they've started to arrange gigs again and hearing them talk about it and how excited they are etc just makes me feel left out and frustrated because it's the one thing I miss more then anything else.

And I guess the last of the negative things that have happened recently is that it just feels like my friends spend more time talking to my ex then me. After we broke up she seems to have joined our "friendship group" (for lack of a better term) and they'll ocassionally do stuff like go the pub or go round someones house or something and i'm just stuck in my house, left out. I know it isn't as black and white as that but it's just added stress on top of everything else really.

However despite all the negatives I definitely feel the best I have done since xmas. I've started to do yoga (very lightly) and go for walks (only to the end of my street and back atm which is like 5 minutes), when I feel upto it, and did quite a lot of "research" on post viral fatigue. It seems like that post viral and CFS are very similar. Not to scare anyone or anything because the thought of CFS is terrifying honestly but just feels like if i can get a good understanding of CFS then I can get an understanding of post viral and maybe try some things to get better. Well in terms of what's wrong with my body right now it's a weird mixture of both mental and physical symptoms that all seem to be made worse by stress and negative thoughts, but that doesn't mean that thinking positive will just cure me, but it will definitely help. I don't wanna get too much into the science of it but two of the things i thought were quite significant were that firstly that the brain fog/headaches were caused by some sort of constant seizure in the brain which i'd say i can definitely feel if i'm not doing anything; and the other is that about 20% of our mitochondria (the things that make "energy" for the body) don't function properly which is why we feel so fatigued and have no stamina. However there does seem to be some sort of method that should be able to help. Well if it helps people with CFS which is definitely worse then what I've got anyway, then surely it should help me too right? Well it's more of a combination of methods but the main two are called "pacing" and "GET" (graded exercise therapy). Pacing is where you just rest really and avoid doing anything that might make us feeling worse which is definitely helpful and needed but the way I see it is that I'm never going to get better if i don't try to (slowly and carefully) push my body. Which leads us onto graded exercise therapy which sounds awful and I agree it does. By that what i mean is just trying to push your body but not too much, say like just before you'd have a "crash" which is definitely hard to do and I guess alot of it is knowing your body and it's limits, which again is hard because somedays can be worse then others for no apparent reason. And by exercise I don't mean running or weight lifting or anything crazy like that, like simply just walking. Because you obviously don't want to push your body too much cause you'll just crash and be back at square 1. I mean that could be a load of rubbish but I found it all from different sources and I guess only time will tell if it will help me or not.

Finally, I'd say destressing is so important. I'm definitely not perfect at this in the slightest but I am trying my best. Yoga definitely helps if you feel upto it, it just completely relaxes you it is honestly amazing. Meditating too. Herbal teas are also really relaxing and help to destress, especially green tea that really helps with anxiety and i'd much rather have a mug of green tea over some medication personally. Because i've had medication in the past and all it did for me was make me put on weight, but it's whatever works for you end of the day. I've also been thinking about acupuncture too but haven't looked into it too much honestly. Also in terms of uplifting things there's of course this forum and the various stories of people who have fully recovered from mono, and I can only thank you all so much it would be so easy to just never visit this forum again but you have taken the time to post your recovery stories and reply to our questions etc so thank you so so much. Another inspirational story that i've found too is Roger Black. He was an olympic athlete and during the peak of his career he got glandular fever and couldn't compete for 1 and a half years but he managed to make a full recovery and i'm pretty sure he managed to win a silver medal after that, so i'd definitely say if you want to read something upbeat look up his story it's inspiring and relatable.

P.S I'm sorry I didn't reply to anyones replies on my last post, I let my anxiety get the better of me and get nervous about replying which i know is silly and I will definitely reply to people this time, but know for those that did reply I read them all and thank you for taking the time out of your day to reply to my post. Also sorry this is so long lol.

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5 Replies

  • Posted

    I totally understand your struggles. I'm at month 6 and thought I was really done with this whole journey around month 3 because I was feeling so much better. Well, turns out I was just experiencing an up before a down. I also got a cold around Christmas, and its taken this long to get rid of. Literally, I just stopped being congested a couple of days ago.

    It's been so up and down for me as well. I've started back to very light work outs when I'm feeling well, and totally relaxing when I'm not. I guess I am lucky that I've been able to go to work without much of an issue. I did take a day off last week when I had a really low day.

    Like most everyone, I have developed health anxiety from this. It's hard to accept so many odd symptoms and not think it could be something much worse. My doctor seems to think I should be feeling fine, even though Im not. None the less, I've scheduled another follow up on Monday to make sure I'm ok, and mostly for my piece of mind. And, I think we should all do that if it helps to keep us positive. I take my temperature once a day and freak out all over again if it's not normal. I read someone else's post that said her husband hid the thermometer, and I could totally relate. The health anxiety is something new to me, and it is a real struggle.

    I'm also like you that I want to try natural things before pills. I've found green tea with ginger to be helpful with my energy levels. I use sleepytime tea at night to assist with sleep. I'm on a ton of immune building and repair supplements.

    I understand about the friends too. My social life has suffered and I find myself watching my life buzz by and being jealous watching others enjoy theirs without pain and suffering. I often wonder why my friends havent checked in on me more, but I've also got a few that have had mono and have been so wonderful. My boss has a hard time understanding how long I would be sick until one of my coworkers explained she was sick for a year. Today I feel good. Im cleaning up around the house and going out shopping later. Tomorrow may be different, and I guess that's the nature of this virus,you never know what the days holds until it starts.

    BUT...you are so right, we must be positive. I've tried to stay away from stress and tried to keep my anxiety in check. I'm listening to my body more, and when it says rest, that's what I do. The first few months I didnt, and I think that made it worse. I was also diagnosed a month after my first symptom, after 4 visits to the doctor. The third visit they acted like I was crazy, because I knew something was wrong and they wouldn't bother to look for it. I'm no medical doctor, but I also know it's not normal to have a fever for 3 weeks straight. I was carrying on life like normal during that time, and think if I had rested, it wouldn't have gotten so bad.

    I've said it before, but reading some stories on here make me realize this could have been worse. I'm thankful its somewhat tolerable.

    Keep your chin up, you are young and you have a lot of life left. This too shall pass, even if it passes like a kidney stone. One thing I can tell you for sure is family is always there, friends will not be. Lean on your family, make new friends if the ones you have cant understand and support you.

    You will get better. I also agree you have to give your body a little push. My first light work out scared me because I ran a fever for a few hours after and stayed on the couch exhausted the rest of the day. Now my body is tolerating the light work out better with no real back lash.

    We are at the half way mark of our struggles, god willing. Focus on the wins and not the losses. Stay away from sick people. I travel all over the world for work and now I carry antibacterial wipes and gel, and wear a mask on the plane If hear so much as one sneeze. Take precautions.

    Above all else, we all have your back here and are here to listen whenever you need to vent, question, or cheer.

    Thinking of you from the states!

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    • Posted

      Thank you so much for your reply Jen!

      It's been about 6 months for me too. First started feeling ill around late July last year. I had dreadful health anxiety at the start too and i'd say it's only recently that i've managed to cope with it in honesty. You're right in what you say with so many different (and weird) symptoms it seems like there must be something else like surely one virus can't do this much?! But from my experience i've had my bloods done like 4 times and various other tests and the only thing i've ever had come up is the mono test being positive at the start. I just don't think alot of doctors seem to get it. Like for some reason if you google glandular fever they say you'll recover in a few weeks. It's like a bad joke. Like i've seen about a billion different doctors in the past 6 months and only one hasn't been surprised that i've been ill for this long and actually diagnosed me with post viral fatigue.

      Green tea is just amazing! I would try it with ginger but i'm allergic unfortunately. But yeah I forgot to mention i am taking quite a few supplements myself, a multivitamin with iron and magnesium, aswell as having a kale/spinach smoothie every other day. I do struggle most nights to get to sleep so I might have to try some sort of "sleepy" tea or something.

      So true about not knowing what a new day holds with this virus. The mentality I try to have is that if it's a good day I should be active and try to do positive things like see friends or go for a walk etc, but if it's a bad day just rest up. I'm glad that you are feeling good today! I just think it's hard for people who've not had mono, or gone through something similar, to realise how crap we feel.

      I can totally relate to not resting properly at the start. I went on a trip to a friends holiday home for a few days and I regret it so much, but there's no point worrying about it now because it happened and at the time I didn't know I had glandular fever. I was diagnosed probably about a month in too, after going the doctors three times! And yeah think i'll definitely be on the lookout for people with colds and that now. I was round a friends house the other day and his mum had a cold and the whole time i had my nose and mouth covered just incase!

      Thanks again for replying whilst reading it, it honestly made me tear up a little it was very kind especially the bit at the end, so thank you!

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  • Posted

    Hi George,

    That was a really heartfelt post and the pain and suffering you have been going through with this horrible virus is all too clear from it, and I recognise my own experience of mono in much of what you say about the different emotions, fears, worries, etc. And the first thing to say is there is absolutely nothing to apologies for in terms of your post or replying to other people's messages - I know too well myself when you are at that lowest ebb and dealing with this virus how hard it is to do anything let alone get onto the computer and write messages to people. It's the same for everyone on here, we all know how awful this virus is and there is no expectation on anyone to respond to messages or anything because we just don't know how we are going to feel from one day to the next often when in the midst of it and it's so frightening.

    The thing I really wanted to just encourage you with was in respect of the post viral against CFS thing. I went through exactly the same George, very frightened when you read / hear about CFS and doctors start mentioning it to you and things. Many doctors just try to write people who have been unwell with mono for longer than 6 months as CFS which is TOTALLY WRONG in my opinion. I have come to believe, from my own experience and reading lots about this virus and the recovery stories of many people, that there is a real and stark difference between post viral syndrome and CFS. What you are going through now is post viral George, anything certainly up to a year and for some unfortunate people a little longer when recovering from this is post viral - it is your body getting to grips with and taking the time it needs to get over this nasty nasty virus. But post viral DOES get better - you will make a complete recovery George, and the vast vast majority of people who take some time to get better from mono are going through post viral rather than CFS - and post viral does get fully better with time. Again of course I'm no medical person it's all just my views / opinions based on what I have learned about the virus and my own experience. But I really want you to know there is hope and that you will get better George. It took me 10 months to see a major turnaround and I went through the same kind of depression, lows, fears, health anxiety and all sorts - it was the worst experience George and I'm thinking about you and want you to know that YOU WILL GET BETTER - and that's coming from me as someone who was so drained and weary and discouraged and thought at one stage they never would - just so grateful to God for getting me through it, my recovery was all down to Him.

    So sorry to hear about the issues you've been having with your friends / band mates. It's so hard when people around don't take the time to understand, it is very hurtful and painful I can only imagine. I was very lucky to have good support from my friends, family and employer. Remember George just do your best to remove stress, it's totally understandable to be frustrated and upset about these things and remember those who are true friends will be understanding and compassionate and stand by you. Just hoping your friends can take the time to see from what's been going on recently how much you have been struggling and how much they need to be there for you at this time. Glad to hear that your family have been much more supportive, that is good to hear.

    Sounds like you have been doing all the right things George - yoga sounds good, walking was such a great help to me during recovery and just listening to your body and finding a balance between rest and activity, without overdoing anything and taking things slowly, is so important. And with regards to the future of the band and your university, just try not to think too far ahead right now George, September is a long way away so just deal with each day as it comes for now - just getting through that awful period around New Year is a massive achievement and just be kind to yourself and take things slowly - I have been through a lot of tearful and low times lately too and it's just about taking a step back sometimes and putting your health first and not placing pressure / expectation / timescales on yourself. I know it's easier said than done though.

    The Roger Black story is a great one, it was only after I had mono I think I came to learn about that but as a fan of athletics and a runner myself many years ago and at the time I got mono it really is a great story - it doesn't matter how fit or strong you are, this virus takes no prisoners but there IS hope and there IS recovery - it just takes time sometimes unfortunately George and remember just hang in there and with time I truly believe you are going to get there and get better.

    Thinking about you and message any time - I have strong faith that God is going to bring healing in your life and circumstances and that this year is going to get much better as it goes on for you. Just take care of yourself and give yourself time and space right now - that's important!

    Craig

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    • Posted

      Hi Craig,

      Thanks for the kind words yet again! I think I might have worded it wrong, but I don't think i've got CFS and it's actually not something i'm worried about really, I really do believe I will get better it's just going to be a long painful journey. It was just from what I found out from post viral and CFS is that they're different "intensities" of the same thing if that makes sense? I mean it could be all a load of rubbish, and I only got a D in my biology A level so I don't pretend to be an expert on it aha! Just think some of the methods of coping/"curing" it would also seem to help with post viral.

      I'm sorry to hear you've been through tough times recently too. I totally agree with not placing expectations on yourself and that, and i'm fine with that now for like little things like I won't force myself to do yoga if I know my body isn't up for it etc. But I still struggle when it comes to bigger things like Uni and the band, I almost feel like I HAVE to be well by September and I know it's not something that I should expect of myself because I will recover when I recover and I can't really change that. I just don't want the two main things in my life to drift away I guess.

      Thanks again for the kind words it honestly means a lot that you take the time out of your day to reply!

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    • Posted

      Oh I'm no expert in these things either George, but I definitely do have that belief that that most people going through a tough and long period of being unwell with mono are going through post viral, which does get better, and not CFS which can understandably worry and panic people, and that there is a clear and distinct different.

      You've been suffering this last while with this George, it comes across and it's not easy to be patient or to keep feeling optimistic and positive when feeling so unwell and having setbacks at different times. But I totally agree that you will get there and get through this - and I believe you're further down the journey than maybe you realise, the first 6 months is the time you never want to go through again, the intensity I do hope will lessen from now on and even if it is still maybe a few months or whatever (hopefully not as long), do remember that you will get over it and recover - you really will I believe that fully.

      Thanks for your kind wishes for me too George, it's been a tough 18 months for me with lower back pain and a prostate issues and being off work / losing job, but God has been helping me and just trying to take things slowly too and take the right steps forward with God's help, things have been more stable this last couple of months which has been good and just need to take it one step at a time.

      It's totally understandable George when you care about things like your band and uni that you just want to be well enough to be able to do them. I know it's not easy but try not to put a 'timescale' on recovery as such, e.g. like 'I have to be well for September' as it just adds extra pressure, if you can just take it one day at a time and not look too far ahead, I know it's a cliche but still I found it did help me a lot during recovery when I started to be a bit more patient and just accept that recovery will happen but it will take the time that it needs and not to rush or expect too much too soon. I know it's easier said than done though!

      Do keep in touch George and let us know how things are going the next while, as I say I really do recognise so much of what you're going through from my experience too, and definitely want you to know there is hope and light at the end of the tunnel and full and healthy life again after this horrible virus!!

      Craig

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