Mono (glandular fever), guilt, and desperation

Hi Jesse,

Would there be any benefit to knowing if there's an enterovirus or not? I know I tested positive for EBV, but knowing that doesn't change the treatment or outcome. Is it any different for enteroviruses?

IVIG is used where I live, but it is reserved for people with serious illness because of the risks involved and the limited availability. Mono is awful and disabling, but it is still considered a minor illness here. I'd be very interested to hear if anyone here has used it to break out of mono.

Hi Sarah,

Sorry you are not feeling well, I am having a down day as well, I have not been offered any treatment other than rest. Let me know if this works for you, I have heard about valtrex?

Has anyone tried this?

 

I've never heard of valtrex.

The past few days I've spent entirely in bed. My whole body is just as weak, achey, and floppy as it was when I first got mono five months ago. This is hugely discouraging, going in the wrong direction.

Am I ever going to be well?! It's been weeks since I contributed anything to the household and I feel like a total leech letting family and friends handle all my responsibilities for so long.

Hi Sarah,

I have had a pretty good week, but I think my fifth month was the hardest, I felt exactly what you are describing, I was told to try green tea and raw organic coconut oil. I dont know if this had anything to do with improvement or if the virus is running its course, I spent last weekend in bed feeling crummy and for some reason this week I feel better( six months and 10 days in)

I hope you feel better soon, I would never have though a month ago that I would have five pretty normal days in a row. 

Reach out anytime, I know how utterly depressing this illness is.

Hi Sarah,

So sorry to hear you have been struggling, I agree with Mono five months or around that time still felt rough for me and left me wondering when I would ever feel better. It is possible around this period I would say to feel like making small steps forward and then like you're thrown right back again. These mini relapses are normal but in no way mean you're back to the start, in fact each mini relapse helps your body to get grips with the virus and helps in overall recovery I believe.

I know none of that really helps when going through it at the time, just want you to know that you have weathered the worst of this even if it doesn't feel like it now and you will never have to go through another five months like the first, things will gradually get better overall from here and there is hope and a fully recovery ahead, I truly believe that for you Sarah!!

I also truly believe that for you too Mono and thanks for your words of encouragement for others despite not feeling so great yourself - shows what a good person you are and there is a marvellous recovery happening for you and you will feel the manifestations I really do believe!

Take care and hang in there!!

Craig

Hi Sarah, my 5th month was just as you described. It is so discouraging thinking that we should be seeing some progress by this time.

Well into month 9 I'm beginning to see improvement.I still have aches, pain and fatigue. I have some days that I can wash a few dishes and do a little cooking.

I ask my husband to take me out for a short drive every day. Distraction helps even if it is short.

At month 5 I thought I would never be better. I had no appetite.

The last 6 weeks my appetite has returned and my weight is back to normal.

You too will get better!

It is important that you tell yourself this even when you can't see it happening. Say it out loud several times a day! Ask God to give you strength and help!

New symptoms still come and old ones fade and some come and go. I just keep looking forward to each bit of improvement.

Hope you see improvement soon!!!

Rhonda

Hi Sarah,

I agree with Rhonda, that the first thing I noticed was my appetite started to come back and then I started noticing better days mixed with not so good days but finally a little progress.

 

My appetite came back in February and March and I gained back half of what I lost. I did laundry and sometimes drove to the store for groceries.

Now, I've lost most of the weight again and I seldom leave the bedroom. I've been snacking on dry cereal and juice that my guy brings to me. It is very, very depressing to be back in this state after making some progress. I can't even remember what's going on and I have to ask what day it is and how many days I've been in bed. Everything hurts and I'm too weak to stand for more than a few seconds at a time. I'm so done with this virus! I feel trapped in my useless body.

Hi Sarah,

This happened to me also and then I went right back to feeling sick(relapse)and remained that way until last Monday when I started to feel better out of nowhere. I have been drinking green tea and taking about a quarter to half teaspoon of coconut oil( raw, organic) not sure if that is what helped but I figured it couldnt hurt. 

I also felt trapped in my body( very good description of this miserable, depressing experience. 

Sarah, I have y where you are now. At 4 &1/2 months I had a horrifying relapse!

It was very debilitating. I could hardly walk to the bathroom. I could not think or bare to try to carry on a conversation. My voice was so weak I could barely speak above a whisper.

It lasted a good 3 months. I hope you are better much quicker than I was!

I looked at the ceiling and walls day after day.

You will have better days ahead!

I am now so thankful for the smallest improvement!

I am still struggling. I just had a conversation with myself. A reminder that others have full recovery and so will I. Please believe there are better times coming your way!

Rhonda

I'm really glad you guys are here. I wouldn't wish this on anyone but it's so good to hear that others have prolonged mono. You guys make me feel less crazy.

I hope they make a vaccine for this monster. A cure would be even better.

What are you guys looking forward to? For me it's running, drinking wine, weightlifting, and travelling beyond the local grocery store. Going back to work would be good, too.

Sarah, I am looking forward to being able to do the normal activities of daily living

I was just praying for you as I rcalled having to be almost carried to the toilet with my relapse by my husband and daughter.

I would like to travel some. I am looking forward to telling others that full recovery will come for them because we have all reached it by God's grace!

You are not crazy! The virus snd others may sometimes make us wonder but we know what only those who have had this virus know....we are strong, brave,and are fighting a real battle!

We have no choice but to be patient as we can't rush the healing process.

I do believe each accomplishment begins with the decision to try. We can not help that our bodies are holding us back but we can keep repeating to ourselves even through our tears that we will recover!

Rhonda

Hi Sarah,

I want to go to the beach, eat dinner out, travel with my kids and walk my dogs! It is encouraging after all these months to have a few good days, it gives me hope. 

You are in our thoughts and please continue to post with any questions or just to know you are not alone, I have talked to a few other people who had prolonged Epstein Barr and they all recovered so this has been very encouraging.

You guys both have kids!

I told my guy months ago that he can't propose marriage until I'm well. We're both in our late 30s, so childbearing years are dwindling. After being ill for 5+ months and counting, I'm scared of how I'll handle pregnancy and a young child. I feel as though I'll never have enough energy for that. This virus really screwed up our plans and my confidence in my own ability to deal with life. I've been very seriously questioning whether I should have kids at all thanks to this experience...

Hi Sarah,

I was beginning to think I would never feel well again, but last week I suddenly felt like myself. I am sure this will happen for you too. 

I was born when my mom was forty and I still have her today, 94 and has more energy than I have had the last six months.

`

94!! That's wonderful. I hope you return to normal soon so that you can enjoy some time with her. Even though you're feeling better, don't push too hard! Although I imagine it's tempting to take on EVERYTHING you've been missing.

My mom passed away less than a year ago. I think the ~ 3.5 years I was balancing her care with my career played a huge role in getting this illness. I was so worn out that I was sick most of 2016 with every bacteria or virus that made the rounds. I was just starting to enjoy a normal healthy life when mono struck. I think the EBV had a party with my battered immune system, sleep deprivation, and grief.

Thinking of you Rhonda, I find your words of hope and faith an inspiration for myself even when battling with things in my own life so thanks so much for that. Hang in there and I truly believe you are on the road to a full recovery.

Craig

Sarah...I really feel your pain just want you to know that there is hope today and there is a light at the end of the tunnel....blimey I know it seems so long when going through it but just want you to know that I understand and believe without any doubt at all that you will make a full and complete recovery.

The same goes for you Mono and Rhonda, you will all be able to do those things that you dream of doing again. It will happen and I just wish people understood more about this horrible virus and how badly it affects people and were more caring and compassionate to those going through it.

You will all most definitely defeat it Sarah, Rhonda, Mono, and it will have no stronghold over you anymore and happier and more peaceful days are definitely ahead. I know it doesn't always help when going through it and having to deal with the day to day woes, but just concentrate on one day at a time and don't look too far ahead - getting through each day when dealing with the symptoms is a real achievement.

Craig

Hi Sarah,

My mom now lives with me, she was in the hospital off and on last year so I do think you can become run down and that does not help.

I am being careful as the weekends are usually crash time and I am feeling a little tired, you cannot turn your back on this illness for sure. i am going to rest this weekend.

Hope you are feeling better soon.

Hi Mono,

I know that "in and out of hospital" dance well. I hope you've got family to help out. It's psychologically taxing (for both the carer and the parent) in a way that people don't understand until they've been in this situation. I'm so sorry that you've got to deal with EBV at the same time.

Craig, thanks for your ongoing encouragement and support. There may be a light at the end of the tunnel, but mono has blindfolded me so I can't see it. I hope I'm moving toward the right end.

Hi Sarah,

I know what you mean about mono blindfolding you, I thank Craig, for giving me hope that this will end, I am tired today but trying to listen to my body and rest, as Rhonda  and Path say so many strange and different symptoms that come and go, along with the general malaise/depression/ feeling of constant illness.

I wonder how many people are misdiagnosed with depression.

I am very lucky to have had a doctor that had a long lasting virus(not mono/EBV)

that landed her in the hospital as well as a long leave from work, she really took the time to listen, her np also had a daughter with reactivated mono.

She tested me for Epstein Barr among other things, it helps to see the test results and know where the numbers are so you know if it is reactivaiton or just the body's immune response.

Hi Sarah,

We have had a similar experience, I cared for my mother and my brother during the last years of his life, while balancing a high stress job, he passed a year and a half ago.

 I also had a couple of viruses, then mono struck. It may well be that getting run down leaves you vulnerable to this illness. My grandaughter had it last summer , I got it in late October and my daughter became ill in November, she is still fighting it also.

Hopefully the end of this virus is in sight for all of us and I so appreciate everyone's support.

Hi Sarah / Mono,

I totally understand that feeling of not seeing the light at the end of the tunnel, after all it's so hard to feel optimistic or upbeat when it just feels like the virus is battering you down every day. I get it, I really do, and I felt exactly the same and thought it was never ending.

It's important to hold onto hope though because there is plenty of that even in the difficult and dark days. This won't win in the end, your body does and will recover, even though you can't see it now that will happen. Just remember to just take one day at a time and not look too far ahead, every day is an achievement to get through when feeling that way.

I just wish people understood more about the horrible way this virus affects you physically, emotionally and mentally over a period of time. Thinking of you both today and just hoping for a settled day and period for you, and remember keep in your mind that this is all temporary in the grand scheme, much as I know that's not much consolation when feeling unwell.

Hang in there guys - you're getting there every day even and better days are most definitely ahead.

Craig

The forum format is a bit strange for me, not chronologically sorted, and I've posted on the first page last time.

The great dilemma for me in the past 1-2 weeks has been and still is whether to call an ambulance at night or not. I feel palpitations, cannot breathe normally, I have aches and chest discomfort and malaise. I know that I've been through similar nights already and I think I will be fine but at the same time I wonder if there's something really wrong, like my heart failing or nerves start seizeing and I should seek help. It's not like I'm not used to it, because I am, I just don't know if the body can take it anymore.

And then there's the job issue also. I'm not really pressed, I can take a break if i really want, but I've already took 3 breaks and the process of taking a medical leave in itself is exhausting, going to the dr, waiting 1, 2 or even 3 hours, then explaining and looking at how puzzled she is. Then, after the family doctor, I must decide if I go to the hospital or stay home. Folks at the hospital have no clue how to help me either... It's just that sometimes I'm afraid that some organs may have gone astray and I need a check, but 3 times I've tried it and they found nothing wrong except a mild ST elevation in the EKG.

Hi Sarah,

How have you been?