Mono (glandular fever), guilt, and desperation

Hi Sarah, sorry to hear you are still struggling so. Don't push yourself but do look for some distractions and reduce all stress as much as possible.

18 months for me but I have greatly improved and so will you.

The articles are just for their studies. You will eventually figure out what works for you and your body.

I found once I surrendered to the idea of a long slow recovery journey and accepted I must go with the ebb and flow of it, I found relief from trying to make it happen. It will and is happening for you .

Focus on all and any progress. What can you do that you couldn't do.

Prayers, Rhonda

Hi Sarah,

So sorry to hear you've still been struggling, I just want to write with some hope too like Rhonda, I really agree with Rhonda that if you can reduce stress as much as possible (hard I know when feeling so unwell makes you feel stressed) that will help and remembering that you will still make a full recovery and this kind of long recovery is normal for the virus as Rhonda says, but that doesn't mean to say you won't get better or make it - because you most definitely will!! And as Rhonda says it's about finding what works for you, CBT may work for some people but not others, just finding a routine that is relatively stress free and manageable is so important during recovery, and finding that takes time too it's not easy I know.

Defo would advice to take / keep taking vitamins and herbs, a good strong multi-vitamin and B complex especially. And most important of all, I do FULLY believe you're going to get better Sarah, as I believe the same for Rhonda and everyone on the forum here - hang in there for now and there is light at the end of the tunnel, even if you can't see it yet I can see it ahead for you.

Craig

There is hope. I had to go to a specialist (ENT) about 3 months in, recurring earaches, sore throat, etc. Fatigue lifts, then comes back. Have you been to the Dr lately? Your EBV IgG should be starting to drop from its highest level (mine was still sky-high at 3 months) but you should be able to have some measurable, visible markers that help you each step of the way. Have you had blood work done? CBC, differential, TSH, ebv IgG etc....?

Hope you're feeling better Charlotte, the fatigue can be very zig-zag in recovery but definitely a full recovery can come from it for sure. It's so frustrating the way recovery goes with this I know, especially if you're used to being an active person - but that time willl come again when folk get back to their active selves!

Craig

Hi Sarah,

It is a long and rough road, but I have recovered for the most part. I was diagnosed in October 2016. I never thought I would feel well again, the virus can be very discouraging but you will recover i know it is hard to see now, but it will happen,

So glad to hear you're over it. No residual effects?

I've been scouring medical journals and the internet for recovery stories, and keep coming up with "caught mono decades ago and CFS has been ruining my life since".

I was working part time from month 9 to month 14, now im back to being housebound. It's very hard to believe that this will end sometimes.

Hi Sarah,

i have great sympathy for you, I'm so sorry that you're back housebound. Were you at a good place at 9 months to go back to work? Do you think that's what set you back? Do you have a normal day to day life? You can turn this around, you can recover from this, it is totally achievable. I believe that.

Caroline X 

I started at about 5 hours/week and got up to 25. There's a lot of pressure to get back to life: personal, professional, and financial reasons.

Thanks, Craig. It's hard to believe it's been 8 months since first becoming desperately ill. Thought it was almost gone at 3 months, but still get injured easily, tired faster. I love skiing this time of year but have to be so careful. No more than a couple of hours at a time for work or play. How long did you have it, and how long did it take to recover from it?

Hi Sarah,

Still have some days where I am not as energetic as I was, but not anywhere near chronic fatigue. Back to work schedule. I had a relapse about nine months in and it lasted about 1.5 months. So far so good on the recovery. I may have had it longer than the diagnosed time of October 2016, I wasnt feeling that well the summer before diagnoses but put it off to a bout of flu and a really terrible cold the April before that lasted about six weeks, looking back I wonder if that was the beginning or maybe just run down from that and then exposed to mono as I had a granddaughter who had it.

Hi Charlotte,

It's so tough I know, really empathising with how you've been feeling and not being able to do the things you enjoy doing. For me, it took about 10 months for me to see a major turning point, but even after that it still took a fair bit of time to get back to a full and active way of life, but it's different for everyone, some recover quicker than others, but just to remind that there is hope and there is recovery without any doubt, and you will get back to skiing again and doing the things you enjoy doing - absolutely you most definitely 100% will, I truly believe that thanks to God's healing.

Craig

Hey Sarah,

I was the same as you, it was only scare stories I kept reading on the internet, all this about if it goes on for longer than 6 months then that's you with CFS and everything like that - DON'T BELIEVE IT Sarah. It took me a good while longer than that to make a full recovery, but I did, and it's the same for many people on the forum here who are only starting to improve now after a looong time where they never thought they would.

There is a distinct difference between post viral effects and CFS - post viral I believe is what causes the effects in mono / glandular fever, and although it takes a good while unfortunately for many people, there IS full recovery with that for the vast majority of people. And I do believe that will be the case for you too - remember Sarah they say over 75% of the western world is infected with EBV (the virus that causes mono), most of them get it when young and doesn't cause all these effects, but remember these people aren't living with CFS or anything like it - your body can and WILL recover from this virus and just to reassure that even though it's so discouraging that it's been so long, this can be very normal and it is equally normal after this length of time to go on to make a full recovery, and you will so hang in there - totally agreeing with Caroline in that you will get there.

Thinking of you and remember don't put pressure on yourself, just take things each day as it comes and remember the forum here is a great source of encouragement during recovery.

Craig

Hi Craig,

ive read this post twice. It gives me great comfort. It DOES take time to recover, I wish the medical profession could be more positive.  It can make such a difference to someone. I think a lot to myself that I can beat this, I AM getting better.and it really is! 

Sarah- please don't be discouraged, I know that's easy said. But you did get back to working 25 hours again, so that can happen again and I'm sure it will for you.

Caroline

What I don't understand is that if long durations and complete recoveries are common, why are they absent in the literature?

It looks like recovery is only "normal" for people who have acute IM/GF for six months or less.

I've spoken to quite a few people and their recovery has all been between 1-2 years and they have fully recovered. My friends daughter who is 16 has had it a bit longer than me and is recovering well. I suppose everyone is different?!? My go said to me originally, 6-12 months!

*gp

Actually, from some recent paperwork from the CDC my Dr gave me, about 95% of the world's population has the EBV.

Yeah, I've read that >95% have antibodies by age 40.

Knowing that most people beat it without even noticing does not give me comfort. What's different about our bodies that has us flat out sick with it?

Maybe most people contract it when they are young and it doesn't affect them as much??

Hi Sarah,

I had it for one year and fully recovered, my granddaughter is recovering and she has had it for 10 months, she is 17 that helps.

I keep saying I think the virus has morphed and is stronger, also we now have the internet so we can compare stories.

Thanks Caroline, yes it's so hard I do wish the medical profession would have a more intelligent and compassion understanding about this virus rather than going with the medical text book of 4-6 weeks or 6-8 weeks recovery!

I am so pleased to hear you saying that, that you ARE getting better - because you really ARE! That belief is such a key part of it too, I've been struggling a bit with it lately in my situation, believing I can get back to a full and normal and active way of life, others have been helping me and grateful for that and just hoping God can instil the belief and strength in us to get through things and live freely and healthily and joyfully again!

Craig

Definitely there is hope Sarah, as Caroline and Mono say although the longevity is horrible and so hard to be patient with and ride through, remember there is hope and recovery, for some people it can quicker than others, but all you can do is do the right things each day and remember that the bigger picture is that you will make a full recovery from this, absolutely you will Sarah totally believing that for you today!!

Thinking of you too Mono, thanks as always for your encouraging words of hope on the forum, guys like you and Caroline are such a blessing and I see such wisdom in your words.

Craig