I've had GF for about 6 months now and just wanted to talk about it tbh (very long read sorry!)

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So i'm not entirely sure why I'm posting here or what I expect from it, but i've visited this website a few times during this whole mono thing and have found it helpful and I guess i want to join in the discussion...

So guess it's best to give a background prior to when I first got mono back in early July, I'm a 21 year old student and have studied maths for 2 years and would be doing my final year if not for this infection. I'm also a bass player in a band and we would do gigs regularly say 2/3 times a month as well as practice a few times a week, again this has had to be put on hold due to mono (until recently but will discuss that later). Finally I had just met my now ex girlfriend a month before mono and would probably say I was the happiest I've ever been before all this, funny how life can change so quickly I guess. From all that I guess you could say I'm an active person although I wouldn't really call myself that, I'm quite lazy, don't particularly enjoy any exercise and I did like a drink (especially at gigs).

Enough about me as a person anyway I was on a holiday with my family in Spain when I first started to feel abit "down", it didn't feel like anything major at the time I just felt a bit weak and considering my mum had a cold at the time I just assumed I must've picked it up and didn't give it too much thought, although I remember feeling ridiculously drained in the airport waiting for the plane home but considering how late the flight was I didn't think much of it... it's safe to say I'm more then used to that feeling now... Once I was back home I had a huge sleep and still didn't feel right but it was much better then how I felt in that Spanish airport! So again I thought it was my mums cold still and went round my friends house with my then girlfriend and the band for some drinks and I remember not really wanting much to drink at all and when I did drink it felt like my body was rejecting it. It was after this point I was just getting worse and worse, to the point where I felt so ridiculously dizzy I thought I must have vertigo or something as I could barely leave my bed. At the time my family seemed to think I was being lazy or something which at the time ( and still does) seem just maddening, granted they've apologized now and they've since been nothing but supportive but at the time I felt very isolated bar my girlfriend (again more on that later). I decided to go the doctors because it was clear this was more then just an ordinary illness to me. At first I was sent to see a nurse and she did some basic temperature tests and the like and I did have a mild temperature and she said I probably had a nasty bout of flu that was going round at the time and said i'll be fine in no time and sent me on my way... Well a few weeks passed and I was no better so I went back and this time she recommended I do a blood test for various things including glandular fever which confused me at the time because my glands felt fine. I decided to go away to my friend (and singer of the band) holiday home in the lake district to try and chill out about the whole thing, so i literally did the blood test the same day I left to go the lakes and tried my best to chill out but I was just feeling truly awful and felt like I was just a burden to everyone including my then girlfriend, I was also starting to get some pretty bad pains in my upper left stomach area which I later found out was caused by an enlarged spleen which was making me lose my diet a little, which for me is a true sign that i'm ill I absolutely adore food! It was on the second last day when we decided to drive to morecambe for the day, and coincidentally my worse day so far, that my mum rang me to say that I had my blood test results back via letter being told that I had to make an appointment but it wasn't "URGENT", however since they hadn't said what I had and i'm a very anxious person I had a full blown panic attack worrying about what it could be and had to drive back to the holiday home with my girlfriend to calm down. So a day later I drove back home and went to the doctors and was told that I have glandular fever and after telling her about my abdominal pains was recommended for more blood tests to check on my liver and spleen, both of which were apparently "damaged". In a way after hearing this I was relieved just because at least now I knew what was up with me, but equally just as frustrating was knowing that there is no cure for this and I just had to wait it out. How much i regret going that holiday home is unreal. I payed for exerting my body that much. The following weeks and months were (and in a way still are) the most difficult of my life, everything in my life had to come to a halt, my band, university, my social life and even my relationship. It seemed like no-one could really understand just how bad it felt, the insane brain fog where you just feel disconnected from everything and the occasional pains all over the body that made me feel like an old man. At one point I had back pains so bad that the only way I could describe it was if I'd been kicked to death it was just utterly unbearable. I also lost quite a lot of weight too which was worrying but that leveled out thankfully.

The first few months are by far the hardest as i'm sure everyone here knows. I'm better now. Not fully, nowhere near in honesty but compared to the start it is much better. The brain fog is nowhere near as bad nor relentless and the other day I actually felt well enough to attempt to go the studio with my bandmates to record a song, granted I felt terrible throughout most of it (and still do as a consequence) and we still need to go in for another day sometime in the immediate future, but I did it. And i feel like doing that would be literally impossible a few months ago. I also can occasionally go round friends house to relax or play football manager or any other video games (yes i'm a big nerd). Still a long way off being well though. Just yesterday I got results from a recent blood test that my liver is finally not damaged and if i wanted i could start drinking again, although in honesty I'll probably give it a few more months.

I guess at this point I talk about what's helped me to get to this point where I'm definitely on the up, despite right now feeling the worse I have done in a while thanks to the trip to the studio. Well alot of the stuff I'm going to say i got from here or from other websites and the like but guess it's still worth me mentioning. Just to be clear there is no "cure" or miracle fruit or something that will magic you better it still takes time. Well i've started meditating daily, although in reality i'd say it's more so just committing time to just be alone with my thoughts throughout the day and it helps me to not panic alot as I was very bad for that at the start and had many trips to the doctors that ended up with me being a hypochondriac because of it. I have a kale/spinach smoothie (dependant on what's in the house really i'm sure there's other healthy green shakes that would work too) as well as other dietary changes such as just eating a more balanced diet, having a daily vitamin & iron supplement and cutting out caffeine and artificial sugar although i must admit i'm not very good at the latter (i love chocolate too much). I used to drink around 4/5 cups of tea (in true British fashion) prior to mono but now the only hot drink I have is decaff green tea which at first I used to despise but now I can't get it enough of it. It isn't just the fact that it's stupidly healthy it's also great at calming me down and helping with general anxiety which you'll get alot of with mono. All the reasons for dietary changes is because alot of what i'd read online was that basically at this point I don't technically have mono anymore, I have post viral fatigue which for some reason some doctors seem to think doesn't exist? like we're just making up our symptoms without mono being active? Anyway so post viral is basically the same as chronic fatigue syndrome if i'm right although not as long? I wouldn't take my word for it in honestly I'm definitely no expert, just I read that with CFS alot of the symptoms can be relieved dependant on diet, basically cutting out foods that will give you a big rush and therefore a subsequent low e.g. caffeine and artificial sugar hence why i've cut them out my diet as best as i can and i'd definitely say it helps. Also with the smoothies and supplements I guess that was just to help my liver and spleen out although now that they're fine I guess I'm just doing it out of habit I mean it can't hurt can it. And finally I guess a good support structure helps too, despite the initial issues with my family they have been nothing but helpful and for a time so was my now ex. It's just nice to have people be there for you at all times in life especially at the lowest points.

Sorry for the long ramble I've been wanting to post on here in ages and have only just mustered up the courage to do so, so here's 6 months of worries, anxieties and mono symptoms/"solutions".

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15 Replies

  • Posted

    Oh another thing I forgot to mention was ofc how much it helped coming on here and reading everyone elses stories it made easier to know I wasn't (and still not alone), thank you to everyone for sharing and being so positive in this whole forum!

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  • Posted

    Hey George!

    I am sorry to hear your story. People assume we just seem to get a little tired and then get better when in reality it is an illness that can last in excess of a year.

    I'm 19 years old and it really messed with me when I got it. I thought I was better and then 6 months later had this huge relapse. Was post viral syndrome! Don't worry it does exist but there's no physiological changes associated with it so some doctors are cautious with this diagnosis.

    I am now 10 months post and finally over the PVS though I still feel symptoms all the time. I've heard the second year is a real year of healing so looking forward to it. Stay strong mate and the only advice I can give is rest, and when you start to feel better rest some more.

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    • Posted

      Hey Ryan,

      Sounds like you have really been through a tough year, hoping and praying for much better and healthier times ahead. Absolutely my experience was that Year 2 was like a walk in the park compared to the horrors of the first year on this thing, but just take it slowly, one day at a time and remember you will continue to improve and reach a stage of full recovery with time - truly I believe that given my own recovery experience (thanks to God only) and reading the recovery stories / timescales of others.

      Thinking of you and hang in there!

      Craig

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  • Posted

    Hi George,

    Just read through your story and wanted to say that must have taken a lot of courage to write, especially when the experiences and emotions are so real and raw and current, it's not easy for sure to do these things! I can relate to so much of what you say from my own experience of glandular fever, which was 12 years ago now, but like you it hit me so hard and was so tough to deal with that I feel it's important for me to come on here and let others know there is hope and recovery, because I know how much it got me so down and in a dark place and frightened and just worried if things would ever get better.

    But it does George - believe me - and this first 6 months in my experience was BY FAR the worst. I like you had to take a step back from everything, work, relationships, all sorts, and was also very lucky to have a good family support network around me but it is still hard for others to fully understand when there are no outward signs to others and you can maybe be seen out and about and people think you must be fine when you are not! It was at about 10 months that I saw a real breakthrough and turning point George, things really started to get better after that point and managed to slowly get back to work and activity again - not saying it will be as long as that for you but want to let you know not to panic if it still takes a little while yet for full recovery, that is normal but absolutely it will come and you will get there and get better!! Truly I believe that given my own recovery experience (thanks to God only) and reading the recovery stories of so many other people who struggled badly for an extended period and then got fully better again. At one stage, at a similar time frame to where you are now with the illness, that although I felt a little better I was nowhere near feeling like I could cope with normal life and thought I would have to adapt to a new 'normal', I couldn't see my body resilience being strong again or me ever being able to handle stress or normal levels of activity without struggling and paying for it. Believe me George this phase will pass and your body will get stronger again with time and your full body resilience will return, it just takes time with this thing it's so hard to deal with I know.

    It sounds like you've been doing all the right things in terms of looking after yourself, doing the meditation and different nutrients, avoiding alcohol, etc. Vitamins and herbs that really helped me during recovery included:

    • A good strong multi-vitamin per day (Immunace Extra, on sale in places like Boots, is a good one!!)
    • A B100 complex vitamin per day (great for energy levels and nervous system) / Co-enzyme Q10
    • Higher doses of Vitamin C (1000mg-3000mg per day)
    • Immune boosting herbs like siberian ginseng, echinacea, oregano

    You're so right that doctors just don't seem to get it or grasp what it's all about and how debilitating this thing is - the post viral effects do completely go with time George, it frustrates me when doctors try to tell people who don't recover within a certain time scale that they have CFS, when in the vast vast majority of cases it's not it's post viral and your body just taking the extended time it needs to get over this nasty virus - and it does get over it with that time!!

    It's so hard when life seems to be going along well and then you feel like you have to step back or lose things because of this - it really hit me hard George. But hang in there, things will get better, life will get better - the anxiety and depression will lift as things get better over time, you are young and I truly believe will have healthy and happy times ahead again, there may well be a positive reason for this tough time that God is working on right now and maybe can't be seen yet but will be soon! God is the great healer I truly believe that and He will get you through this tough time George and get you well again!!

    Thinking about you George - message any time and this forum is a great place to come for nice chats, encouragement, understanding and discussion. It frightened me trolling the internet about this thing and only reading the scare stories, so somewhere like this I think for sure is a good place and can help with recovery. Only people who have went through this really know what it's like and remember George you WILL get better from this - there is hope and recovery - and that's coming from me as someone who doubted it myself when in the midst of it too. Just coping with one day at a time and being kind to yourself, getting plenty of rest, still trying to see friends and family if you can as it sounds like you have been doing, are all wise things!! Hang in there and thinking about you!!

    Craig

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    • Posted

      Hi Craig thanks for replying!

      I gotta say I see you replying to most peoples posts on this forum despite the fact you've not suffered with this yourself for 12 years and you always have such positivity and nice things to say so thanks again for just being a real positive force in this forum and reminding people such as myself that this will end and we will get over it.

      I'd say that right now I'm in a better place then even say a month ago and seeing as how most people say it's around 10/12 months that they started to notice major differences I know that hopefully i'm not too far away from a full recovery! Although with this disease it seems impossible to predict if you'll feel dreadful or nearly normal a day in advance, so I guess i've just learnt to take each day as it comes and if it's a good day I'll try to go out and socialise or do something positive, and if not then I'll rest and try to conserve my energy.

      I might have to try some of those supplements and herbs you recommended too, i can't see any harm in giving them ago!

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    • Posted

      Hi George,

      Oh thanks so much for the kind words that is really appreciated, I've not been working this past year or so and have had extra time so it's been easier for me to take the time to come on the forums and chat with others, and I still remember how awful a time it was to go through glandular fever and definitely want others to know there is recovery and good health and life again after this thing with God's help!

      I know it is not easy and so hard when you read that for some it maybe takes 10 or 12 months or whatever for recovery, it's so hard to be patient and just the not knowing the recovery timescale is a frightening thing in itself - if even you know that for talking sake it was going to be another 3 months and you would be fully recovered, it would be a bit of a blow initially to think you have to go through another 3 months but then there would be hope and relief too knowing that there would be an end to it after that. But George definitely want you to know that even if it does take a little while longer, you will get there absolutely I believe that given my own experience and reading that of lots of other people. And this first 6 months you've been through is absolutely the most intense and the fact there has been a slight improvement in the last few weeks is a good sign and hoping very much it means that you are coming out of that really intense phase. Remember though this thing can be very zig-zag in recovery, often with no logic, so don't panic if there are any days or weeks that are worse than others, it doesn't mean you are going backwards in recovery it's just the way recovery seems to go with this thing and usually any kind of setbacks liked that are temporary and short lived.

      Definitely sounds like you're taking the right approach, just managing each day as it comes - it's all you can do George and I know it's frustrating when you can't even plan ahead a few days as you don't always know how you are going to feel. Remember if today's not the best day or not feeling brilliant, it's okay and it doesn't mean it is always going to be that way - it's not and you will get to full recovery with time, hoping, praying for and believing that!!

      Hoping you can have a good and settled weekend and do keep in touch, message any time not feeling great or just any time want to chat!! And remember you WILL get FULLY better with a little more time.

      Craig

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  • Posted

    lol i can relate to people thinking youre faking it! and the cfs diagnosis i had post viral fatigue diagnosed as i velieve my mono wasnt caught early enough. anyways, it sounds like youre slowly getting better. stay calm and.. heal on!

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    • Posted

      Hoping you are doing okay at the moment Van and that you are seeing improvement and recovery manifesting. Hang in there still thinking about you and rooting for you, there is hope and trusting God with that for sure.

      Oh I know it's the fact that this virus is invisible which makes people seem to think you are okay, because perhaps there are no outward signs, you often look okay and can maybe be seen out and about trying to do normal things. But they don't know just how you are feeling and how hard this thing is to go through. Believing everyone on the forum and reading these posts are going to be FULLY healed from this virus thanks to Jesus, He is the great physician knows more than all the doctors!

      Craig

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  • Posted

    George,

    I can totally relate about the time when you didn't know that you had mono and put it to the side as a cold, because I did the same thing. When I thought I had a nasty cold, I pushed myself way too hard, (I went on a road trip to Tennessee with my friends which consisted of non stop walking, little sleep, and little drinking (because the sight of alcohol made my stomach turn at that time), and now I am unfortunately paying a price for not letting my body rest. Two weeks after I got back from the trip and I still felt sick, I went to the urgent care and was given the monospot test, it came back positive and I was in shock. Given, I do feel better than I did during that time, which was about two months ago, but I am definitely not completely better yet. I just finished the semester at university and let me tell you, having mono and a full time schedule is incredibly hard. It's nice to know that I'm not the only one who felt this way!

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    • Posted

      Hi Madison,

      Was just wondering how you were doing today, is that your exams finished now? I hope so and definitely hope you are feeling some relief at that, and it can lift a stress off your shoulders. Take some time to really take it easy, rest and just give your body time and space to recover - it takes time to rebuild again after this Madison but truly you will get over this and won't always feel the way you are feeling right now.

      Hoping for a good and settled day and remember message any time!

      Craig

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    • Posted

      Hi Madison, thanks for the reply!

      I can't believe you carried on going Uni with mono! I've had to take a leave of absence for the year with Uni so props to you for sticking with it I can't imagine how hard that must have been. Yeah I get you with the alcohol making your stomach turn it's like your body just completely rejects it, like it does when you get really drunk or something aha, it's very weird.

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    • Posted

      Hi Craig,

      I was feeling slightly better yesterday, but this morning I woke up feeling absolutely horrible, and it's probably because I did a lot yesterday and my body is not ready for that. Praying for better days to come in the future!

      Madison

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    • Posted

      Hi Madison,

      Oh so sorry to hear that you were feeling worse when you woke up after a day of doing more things, it's so frustrating I remember it happening to me a lot during the virus and how hard and emotionally tough it was to cope with that as well as feeling physically fatigued and drained.

      Just want to reassure that this kind of thing, despite being so awful and frustrating, is normal during recovery from this thing Madison, and it won't be like this forever, sometimes it's just a cycle / phase that can happen as your body is getting to grips with it all but over time your body will get stronger again and will be able to do normal levels of activity without feeling awful or worse for it the next day. But for now just cope on resting up, hoping that your exams are over now and sometimes remember that's when the tiredness can catch up with you too when you stop after a stressful period, so try not to panic and to keep calm and remember this is normal, to be kind to yourself and rest and that you will feel stronger again and get through this tough phase.

      Thinking about you and hoping you are feeling not as bad today and remember take it easy, and message any time.

      Craig

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