Do I have mono?

I’ve just felt constantly awful now for 6 months .. I  think I’ve 5 or 6 ok days where I’ve managed to do human things like go to events . 

Hey Diane,

Just wondering how you are doing, I was pleased to see you saying you had started to feel a little more normal again, that must have been awful that relapse putting you in bed for 7 week. Noone that has not been through that can truly understand the severity of the mental anguish, lows and torment that having to live through each long day of those 7 weeks must have been. Just want you to know I'm still thinking about you and hoping and praying this can be the start of a real turning point in your circumstances - you deserve it so much Diane.

Thinking about you and believing that better times are ahead for you Diane.

Craig 

Hi Lori / Malene / Ant,

Thinking about each of you still, and noting everyone's comments on the issue of it being a one-time virus and reactivation. Certainly your body can only ever be infected with EBV once, that much we know for sure, and in theory at least it can never get you as bad as it did that first time, that's definitely good news for those going through this right now - that it does get better and your body does get it under control eventually. 

Again my medical understanding is limited so don't take what I say as read by any means, my understanding is the virus stays dormant in your system after your body has got it under control, and whilst for I think / hope many people reactivation is never an issue, for some people it can seem to happen, particularly if your immune system is low or maybe have other health issues or under a period of particular stress. About 21 months after I was first diagnosed, after a period when I had been feeling much better and was starting to get on with life again, I hit a setback and had a blood test which showed EBV was active again - this was after loads of tests showed it wasn't active other than the initial one way back which diagnosed me. It frightened me so much, I was thinking will I have to go through all this again, it was terrifying. But thankfully it was just a setback and things settled down within a few weeks, so again I think the good news hopefully for anyone with reactivation is that usually by that stage your body is well equipped to deal with this virus and knows what to do and can get it under control quickly, and in most instances I really hope that it doesn't mean folks have to go through the same kind of horrors as the first time around - it may just meaning having to take a step back or taking it easier for a week or two or a few weeks, but that normally it doesn't go on and on the way it does first time round. 

That's just some thoughts from my own experience and (limited) knowledge anyway. And remember there is hope and I still believe that you guys, Lori, Malene and Ant, are each going to get through what you're dealing with and get better with God's help. Hang in there.

Craig

After reading many many articles I also read that it’s a ‘one time thing .’ Please God this is accurate don’t think I could live my life worrying .... can I workout?  can I travel ? What if I get stressed? All these factors are enough to keep you stressed the rest of your life . 

Thanks Craig - maybe that´s why grownups often don´t have as severe symptoms as younger people - because we probably are dealing with a reactivation, as most grownups will have contracted the EBV virus, often without knowing, thinking it was a tough sore throat episode.

It´s so annoying to be told that it lasts for 2 months, when many of us struggle on for months.

Is that normal - or are we simply hit harder with the virus?

Another problem is, that there is no treatment, so doctors don´t really follow their mono patients, and won´t truly always know, how long we feel ill.

Lori!

I don´t think we need to worry too much about it, I found this online:

"It’s incredibly rare for mono to return after the first infection. When the virus does reactivate, it usually doesn’t cause symptoms. That said, symptoms are still possible."

It really very rarely recurs Lori, lets just stick with that. And if it does the symptoms are MUCH LESS SEVERE!!!

I’ve read nothing but dire news on this subject . Now we just have to get through this monster . 

My main worry has been thinking that this could come back again and that it limits my life forever ... so want to get back to some kind of normalcy .

I absolutely agree Malene it is a rare thing for reactivation, I probably didn't communicate my previous message as well as you have! I haven't really thought about it as younger people getting more severe symptoms, I would have said the opposite maybe that adults to be infected for the first time are worst affected, although in general I think it's the same for any teenager upwards who is infected for the first time. But for sure I get what you're saying that any adults unfortunate enough to have a reactivation often don't have as severe or as long lasting symptoms, but again one size does not fit all with this thing!

Oh Lori all these things go around in your mind I know, wondering worrying if you can cope in the future and all that. The only thing anyone can do when going through this is living in the present, not to dwell on the past and not to analyse too much or think too far ahead. When you start to feel better a lot of these thoughts and issues will disappear naturally, you won't feel so overwhelmed and burdened at that time, so just coping with the here and now is the most important thing and the future will take care of itself and there will be healthy and happy times ahead. 

Craig

No no Craig, you're very well formulated, I wasn't, but the main thing is, that reactivation is very rare and symptoms less severe. Great news for Lori!

I feel a bit weird and spacey today but not as fatigued .... I know it will come later as the day moves on but for now grateful for this little respite and managed to get a few errands done ! 

Ive just started to do acupuncture/Chinese herbs. I'm not sure if it will work but people i know have suggested it saying it helps alot. Its another option if you haven't considered it

Hi Craig and thanks,yeah my appetite is coming back and was able to drive to shop in our village,nothing major and had to lay down when I got back but can feel a bit of a change but no where near normal,whatever that may be!! still needing to rest loads,i just hope and pray that this is the end of it now,i really cant go through this again,got a way to go yet to get some stamina back but I don't feel as poorly as I did,hope your doing ok Craig? and thanks again for keeping us all going on here xx 

Hi Lori,inbetween the relapses I was getting back on my feet for a couple of months (not like I was before I got it though) and then bang I fell ill all over again and it put me back in bed every time with feeling like I did at the beginning,it always started with sleeping the whole day away and feeling like I was coming down with flu and then the dizziness and upset tummy,headache aching,nausea etc (didn't have the sore throat,probably cos im older!! ) I just wish I could go back to how I was before this awful thing struck me down 15 months ago,its honestly been the worst thing ive ever had and im on my own too like you,its difficult with no help isn't it,i had a decentish day yesterday,able to drive to shop near me and potter round house a bit but today ive paid for it and have felt so exhausted and slept a lot

I thought once it goes dormant it doesn’t come  back again..... why does it keep recurring I wonder ?

And yes been the worst thing I’ve ever gone through ! Wonder if it’s best just getting through it alone sometimes as even just talking exhausts me . I manage to keep the house in order by doing a little everyday but I used to clean all day the whole house ! 

Take your time - cleaning the whole house can wait. I learned this very early on. I have now hired a cleaner because as much as I can clean the whole apartment myself in a couple of hours, I was completely exhausted for days after or if I didn't get a chance to do it one weekend, it would really stress me out.

Thanks for the kind words Ant, and still believing you're going to get through this tough time. 

It's certainly worth a try Ant, sometimes it's trial and error to find something that works for you. I know that some people swear by acupuncture, I've had it and whilst hasn't done any harm haven't really noticed much happening from it - but again for some people it seems to work really well. 

Bowen Therapy was something that I've found really helpful for all sorts of aches and pains and increasing energy over the years. Very safe, non evasive and worth looking in to see if there is someone local that does it!!

Craig

Hi Diane,

That is a big achievement making it out and a drive to the village considering what you've been through, it definitely is. Having not done these things for a while it's understandable you would feel tired after it and need a rest. I'm glad that the intensity has lessened, just hoping it keeps going in the right direction and this can be the start of a stable period and meaningful recovery.

I've been lucky in lots of ways Diane, despite my back and prostate issues God has still helped me to be able to do some things and get out for a walk most days. I'm grateful for that, but still having some down periods and feel I have a burden of not working and mentally breaking through and moving forward and dealing with guilt and shame and all the things I know you must know how it feels Diane.

I still see you as a tower of courage Diane, what you have been through I can only imagine and the fact you still come on the forum to chat and help others is absolutely amazing. I do believe God is there and is going to give you the courage to get right to the end of all this until life is much better again for you. Thanks as always for your kind words always means a lot, you are a great source of wisdom to us all!!

Craig 

Mine has a key let herself in when i am out at work but i totally understand what you mean and would not want her here when I am home resting.

Yes I’m here all day on and off the bed so it’s more stressful than helpful . Can’t believe you are working through all of this ! Praise you 🙏🏻

Thanks Diane, wishing great peace and love on you also, thinking about you today and hoping you are feeling settled and not too tired after getting out driving the other day there - that was a real achievement it really was considering what you've been going through it really was. 

Craig