EBV Nightmare/still dealing with symptoms @6months!

Craig,

thank you so much for your encouragement. im so grateful for you all in this forum. You have the best words for all of us, you are a God-send! Truly-

I'm sorry to hear about your challenges currently. Life is beautifully hard isn't it?

The hardest part about this virus is the zig-zag- you cannot tell what is happening with your body -so it's hard to master this journey.

Thank you for your vitamin list! I have been eating very healthy, nutrient dense foods which helps!

I'm praying for a turn real soon as this is

trying at 6 months-

I have been dealing with so much physically it's very taxing just to get through a normal day- wondering if you can do small day to day things.

Rest is all that can be done.....

Hopefully you have a good day and thank you again for your wisdom

Starr

I'm just approaching month 12 and it's been the worse 12 months of my life...health wise. It completely knocks you for six. Just when you think you are getting better it knocks you back again. You also find out who your real friends are etc. Luckily for me my work and family have been amazing to me, my now ex didn't show any care and ended up cheating on me...which was real nice of her. I would say months 6 to 10 I was operating at about 70 to 80% where I would i would really struggle certain times of the day, just for a couple of hours. Incidentally around the 10 month mark and when I fell out with my ex I've started to pick myself up. I don't really have these horrible down moments, so like to think I'm at 90% now and slowly recovering. I still have this strange feeling in my head and get headaches which is my main concern. I do occasionally get aches in my body and around my neck but that part doesn't seem to bother me anymore so like to think that part is easing up. Always get an ulcer in my mouth too...but again they are less frequent. I'm hoping now that I've been through the worse of it, I remember at month 6 I felt so Ill and thought I would never get better as I just seemed to hit this constant feeling and could predict every day I would struggle. I'm now finding work much easier and able to concentrate more. I'm also going out and socialising now which I could never do, but still can't drink.....don't think I will until my head clears.

thats great news ! so glad you are almost there ..im at month 11 and still feel terrible . was doing a bit better the pushed it and relapsed . when did you start to feel really better month 12?

can i also ask your age ?

Hi Starr,

Thanks so much for your kind words of encouragement and support too - I am grateful for that. It's really because I remember how low I was and how tough I found it to go through that awful time with mono that I do want to encourage and reassure others that there is life after this thing - that things do get better and even though it's the most awful thing to go through, the vast vast vast majority of people make a full recovery and get back to full health, even if it does take a bit of time.

Yes the zig-zag nature is so hard to manage because you often just don't know what to expect from day to day and week to week - all you can do is just cope as best you can with how your body is feeling at each stage and take things at the pace that's right for you just now, and trust that you will get through this with God's help because you absolutely will - I truly believe it and that's coming from me who was in a similar position at 6 months just wondering and doubting if I would ever get over it and thinking that I would have to cope with a new 'normal' - believe me Starr your body does gain the victory over this thing, it just an extended period to get there sometimes unfortunately. My experience was that Year 2 was one of liberation, freedom and joy because I was feeling so much better that the awful first year, and in particular that awful first 6 months.

And it's only understandable that your confidence is affected when going through this - mines was too but it will come back as you start to feel better Starr. Most definitely thinking about and hoping for a good and stable period ahead - better times ARE ahead for you!

Craig

Hey Dodge,

Totally empathising with that experience of living through a whole year of this virus is just such a draining and awful thing, so pleased to hear you are seeing improvements and it's just building things slowly and over time these lingering symptoms will go Dodge they really will -that was my experience. After 1 year I was also doing a good bit better but still having some symptoms and feeling fragile in a lot of ways, but Year 2 most definitely was like a CAKE WAKE compared with Year 1 - one of recovery, healing, new hope, peace and joy. Very much hoping and praying this can be the same for you and truly believing you have weathered the worst of this, but just continue to take it one day at a time and remember if there are any mini-setbacks they will be temporary.

I was so lucky to have amazing family and friends to help me through too Dodge, just so sorry to hear about what you have to deal with regarding your relationship which must have been so hard to cope with and only add to the stress levels which this virus seems to feed off so much.

Hoping and believing that better times are ahead - thanks for the encouraging words for others Dodge!

Craig

I'm 38, I noticed a change at month 10. I can't say I'm fully better yet, I still have this feeling in my head, but I can do a lot more now. I'm still going to take it easy but will go on holiday in may. I've found it's like I'm doing everything again for the first time in my life, but once done it doesn't seem so bad

Hoping very much that the headaches and funny feeling there disappears with some more time Dodge, sometimes the more stubborn symptoms can linger a little even when other things have improved but eventually they do go. Hoping that by the time your holiday comes round in May things are doing much better with this and it can give you something great to look forward to!

Craig

thank you so much Craig for your positive words! they mean so much.....it took four months to get a diagnosis so i really thought i was dying. Dr's look at you like you're crazy and offer you drugs to pacify you. They're so dissmissive with EPV/MONO, like compete denial- baffeling!

this virus has locked my life up for 6months-

i appreciate your info on this virus-as things are so uncertain with it and your body is healing kicking out new symptoms over the months!

I feel like im in an abusive relationship with EPV !

egg shell walk, you never know whats next

so tiring.....-:(

I pray all day everyday.....

hopefully you are well and enjoying your day!

thanks again.....

Starr

I agree Starr doctors can seem to minimise glandular fever / mono / EBV as something trivial when it can actually be a very traumatic and extremely tough thing for someone to go through, there just doesn't seem to be the same support mechanisms that are there for some things.

You are going to get better Starr, I believe it whole-heartedly and I just really hope and pray that things will settled and a real breakthrough and change can happen soon. God hears your prayers and He is going to answer, it's so hard when we can't seem to see the answer right away but it will come it really will He is a good God and a healing God and a miracle-working God I believe.

My day has been not too bad thanks, thank you for asking and remember to keep managing a day at a time and not look too far ahead, change will come!

Craig

Dodge,

Sorry to hear about your split. People do not understand how extensive this illness really is-

My husband and were getting ready to split before I got sick-which the stress of that-im sure is what made me sick to begin w/. Now my husband is helping but he is having a hard time understanding the length of how this runs for, not sure where we will be after all of this heals. Its like nothing else ive ever experienced, scary to say the least.

I am glad to hear you're doing better -

I just hit 6mos and am still very limited*

i'm also trying to pull out of a relapse -

i wish you luck and glad to hear you are doing more!

welcoming yourself back to the world again-like being reborn......

thank u Craig

well put

you're so right-Doctors have no concern about this virus- its a real problem!!-

Craig you have the most positive encouraging words- you have helped me to not worry-as we all know anxiety runs rampant with this virus!

I feel more comfort from everyone here-than I have ever gotten from DR's

I went to so many-its insane-

Neurologist , Rheumotolgist, Immunologist, Orthopedic Spine Surgeon, Infectious Disease (who was most helpful and diagnosed me), many general doctors, ER visits , so much blood drawn-im surprised i have any left- punctured veins-bruised arms-the xrays, MRI of my spine because of pain- I mean thats just the tip of the iceberg-

I shouldve been home resting but was terrified from all of my symptoms and pain- i thought i was dying-

4 months to get diagnosis-

its been traumatic ....im finally decompressing from the last six months and just trying hard not to be distrought and rest^*

what a terrifying journey this is.....

well-anyways-

i wish you a great day/week/wknd-!

i hope your troubles will be far behind you very soon and you can feel normal as well*!

Im waiting for that turning point to happen-:-)

hopefully soon^^

all i can do is manage a day at a time- or even 1 hour really-

its so strange being limited at a young age-its like the twigh light zone-

Praying is all I do, I am going to bug GOD until im healed -:-)

sorry about your relapse Lori

hopefully you recover quickly!

i hope you are having a restful day

i watched planet earth today.....

6mos of this is pure torture as I am a complete action packed personality

i never sit still!

ughhhhh

the timeline is differenf i guess for everybody i just entered month 11 and never thought it would go on this long ! i too was doing a little better then relapsed 3 weeks ago .. so im

back to more HELL !

i know ! i have watched everything on tv i think the day time is the hardest as sometimes im too ill to even go out ... so lying on the bed all day is no life

Hello Starr,

I can resonate with that feeling of being so frightened and drained and that awful process of going through and waiting for different hospital / doctors appointments / tests, when all you want to do is to be able to be fit and well and stay away from these places. It is mentally drained as much as physically, and I do think the mental and emotional strain caused by the longevity and intensity of this virus are often underestimated / not fully considered by doctors. I live in the UK here and always think it would be great if there was a charity organisation to support people who have glandular fever / mono, I'm not aware of one whilst there are so many other good charities for other conditions out there.

I think one of the real frightening / scary things is just the not knowing when / if things will change when you're going through it. If someone told you now that you would be feeling rough still for maybe another 3 months but then you would make full recovery after that, it would be a bit of a blow initially having to deal with another 3 months but at least you would be comforted and know that there is light at the end of the tunnel.

But I do want to encourage you absolutely there is light there Starr! It might be hard to see and I found it hard to see at 6 months too, believe me you won't have to go through anything as intense or awful as that first 6 months again God willing. Sometimes with this virus things can stay 'stuck' at the same level for a long time and then a big step forward can happen in a short space of time - it kind of seemed to happen a bit like that for me although it was gradual too as I recovered. You will get there Starr - truly you will and God hears all your prayers and will answer I truly believe and trust Him with your recovery - He wants you well!

Wishing you a great (or as good as is possible given the circumstances) weekend too, and message any time!!

Craig

Hey Lori,

Just a wee message hoping that this weekend can be a better one for you, and still hoping and praying that things are settling down after this rough few weeks you have had. Just keep in mind it's still like the waves with this thing, up and down and things will stabilise again - just hoping and praying it can be very soon and still rooting for you and believing God has AMAZING plans for your future and that involves you being fit and well!

Craig

Thank you starr. For me it showed her true colours and if she can do this to me when sick, then what else is she capable of. But yeah, she is the least of my worries now. Sorry to hear about your marriage, but it's good he is sticking around....usually a good sign when people stick around when things are tough.

The relapses are horrible, but I noticed as everyone says the next one always seems to be a bit easier, albeit the bad times are very tough. Don't think I will ever forget the moments being at work, trying to concentrate on a call and when the call finishes going to the toilet just to get away from everyone and have a time out, whilst feeling completely spaced out.

It's so tough Dodge the whole thing the whole experience of this, and I can only imagine having to deal with the relationship situation when going through that too must have been just awful.

Still believing that you are going to be fully well again and that you are going to be a much stronger and more resilience person for having gone through this experience in the long run. Hoping you are doing okay today and that the headaches and fuzzy feelings have subsided.

Craig

yea

tv is getting really old,fast-

reading is good...

im tired of two words;

virus and rest!

-:-|

i am dealing with new symptoms-

zigzag recovery process is crazy! its so hard to stay grounded with this -!

very confusing

they seem to change weekly along with the same ol ones i have?

hope you are doing well.....

thank u Dodge

yea my husband is helping but we'll see where things are when all of this calms down. A true test-

relapses are strange, this was my first in 6mos, triggered by a strep shot/vaccine bad call on my part mu dr pushed me -

now things are changes/new symptoms appearing? i cant keep up!

yes feeling weird is the least of it!

this virus tampers with every cell in your body!

traumatic

its hard not feel something more is happening with in your body-that a virus can cause all of these issues!?!

hope you have better days ahead!

thank u Craig!

yes there needs to be more systems in place for this! In Us there is nothing-

it would be nice to know a timeline/end point even if long!

i thank u for your time and words.....

is it normal to have new sypmtoms arise?

praying that this can all fade away sooner than later.....

its been such a long road these 6mos and im ready to be normal again! this virus is so strange.....

hope you have a great day.....

yes im so sick of that word too ..rest ! i do as much as i can but a person needs to eat clean the house and these things dont take care of themselves !

im sick of talking about ebv sick of resting ! just want to feel ok. im in a relapse right now so back to HELL once again

Thanks for the kind words Starr, hoping very much you have a much better weekend that some of the hard days you have been having lately.

I do definitely think it's normal to get new symptoms arise - for example after 9 months, just before I started to see a major change, I got a real strange and horrible phase of joint and muscle pains for a few weeks, weird bruising too - it got me so down and I just wasn't sure if I would ever get over it - but looking back I think it was the start of my body starting to kick the virus out for good as a real positive change towards recovery started to happen after that thanks to God.

So hang in there Starr, this thing is awful to ride out but it can cause all sorts of new, weird and nasty symptoms so just look after yourself and take things one day at a time - I know all too well getting through a day with this virus when feeling so unwell can be so draining and is a massive achievement in itself.

Craig

thank u Craig

struggling a lot this wk/last wk

hope youre doing well

this thing is driving me insane

ive never been this unstable in my life

im a very grounded person

i was watching a show this man in Austrailia got bit by a mosquito and was sick 1 year

had to crawl around

was yelling going mad etc

so it gave me hope he eventually healed and recovered

i need to fast forward through this illness!

you're not alone this thing is a complete nightmare ! going through this you have to be really focused and strong . the only hope we have is that it will eventually end ...when ? is the billion dollar question .

It's so hard Starr / Lori,

Just wish there was an easier path to recovery with this awful virus, it causes so much pain and destruction and tries to rob you of your health and confidence - but it won't succeed with that in the long run, it might be having it's day in the sun right now but it will be overcome and defeated thanks to God, I still and truly believe that He has plans for a full recovery for both of you.

Hoping today and the upcoming weekend can be a settled and stable one, and remember just small steps and one day at a time, and don't expect too much of yourself or put pressure on yourself right now - and most importantly keep in mind there is HOPE and there is RECOVERY ahead. 100% I believe there is for both of you!

Craig

thank you craig we are all struggling so badly its different every day and you never can tell how its going to be . i hope it happens soon feel like im cracking with all of this . its not easy for any of us .

It's an awful awful virus Lori....truly it is. I really do empathise I know how life changing it was for me too, just so grateful God brought me through and I believe fully He is going to do the same for you. Hang in there...

Craig

thank you Craig

your words are healing

sorry if i reply late

as i miss these messages at times

hope you are well

i appreciate all of your encouragement

as i am usually discouraged

as we all know is a tool if the enemy.....

this virus is evil pure evil

i fight daily with it

i need GOD so much right now and wish HE could come here and touch me on my head and heal me......

this is daunting

and this virus is diabolical!!!!!

hope you find yourself well

and i hope you are recovering/healing/getting through your back struggles.......

healing prayers for all on this forum....

I totally agree Starr, this virus is evil and not what God wants for our bodies. But the enemy won't win, he might be having his day right now but that is going to be short lived in the grand scheme Starr.

You are going to get through this, back to full health again and you know what - you are going to be a stronger and more resilient person for having went through this tough tough experience.

Hang in there and still thinking about you and keeping you in my prayers.

Craig

i hope so soon ....feel like im losing the fight after a few very very bad days. i normally push myself to get out do errands do my walk even though im feeling awful . right now i feel like giving up !

It is only too understandable you would be feeling so down and discouraged when such hard hard days hit.

Sometimes Lori what our bodies need is just to stop and for complete rest and not to push through. Remember resting is not giving up - and don't beat yourself up if there are days that you can't get much or anything done at all - that is okay and is normal during this. You are understandably weary Lori so remember your body is going through a terrible battle right now and that it will recover - so be kind and understanding to yourself and absolutely you are still fighting and not giving up - and not giving up doesn't mean to say you have been up and fighting in the face of it every day, sometimes the smart way of not giving up is to rest, take a step back and just take care of yourself in a gentle way for as long as you need to - the pen is mightier than the sword!

Hang in there Lori....you ARE going to get through this. I have GREAT faith in that because the Lord is faithful.

Craig

thank you craig .....yes its hard for me to stay in bed all day ..i live alone and have things to do . the mornings are the worst and takes me hours to feel somewhat human . i do rest until the afternoon as literally cant do anything until then . its all a big nightmare ... cant wait for this to be over .

thank u

means so much

i know this has changed who i am

and when this ends i will be stronger in many ways

but it has also broken me down so much its hard to imagine a normal life and feeling normal-

feeling very off these last wks

my symtoms have turned in an unfamiliar direction and im scared all over again~

desensitized all over

cant feel my normal muscle pain/muscle fatigue and my hands/feet are cold

im cold too

chills bad all the time

my muscles arent telling my brain theyre in pain

ive been in pain all these months and boom i know its there it hurts to touch now it feels as if im on a pain med/something is blocking the signal?

driving me nuts-

up down/zig zag

ive felt sicker these last wks like in the beginning?....

very hard to rest and heal with youre dodging bullets left and right....

im getting tested for vitamin issues/lacking

?

anemia maybe?

anywho

hard days these last wks

appetite gone again

taste smell off?

how can a virus do this much?

hope youre well!

youre in my prayers

hopefully you are finding your days brighter and happy!

Oh Lori I just pray this terrible time and nightmare for you is coming to an end also, I think you've shown such strength to keep going and trying in the face of the most difficult of circumstances.

Being on your own so much can be so hard. I wonder if there are any support groups for people going through tough times / ill health / anxiety that maybe you could join, I found just being part of mindfulness group lately with some nice people to talk with really helped a lot Lori - just to be with people who understand and know what it's like and empathise.

Hoping you are feeling okay today Lori, I am continuing to pray for you each day.

Craig

Oh thanks so much for your prayers Starr, grateful for that today having a bit of a wobble yesterday and today as feeling my foot sore and that panics me as have had some tough times and lows due to problems with my feet in the past. All prayers are much appreciated and mean so much.

I am keeping you in my prayers too Starr each day. You will be stronger for having went through this in the long run, I know it's hard to see that now and it's painful to go through. Starr this thing is so intense I felt kind of broken during it too and it was so hard - but God is the great healer and He can fix all things - so fear not and know that He is with you and is going to pull you through. And even if you're struggling to hold onto that faith yourself in the midst of the trial, please know that I have strong faith in that for you right now Starr and that others are thinking about and praying for you too.

Hoping you are feeling okay today and remember today's trouble is enough for today - one day at a time is all we can do.

Craig