Mono (glandular fever), guilt, and desperation

Hi Path,

Best of luck to you, we should all update to encourage others.

At first I didn't see this forum, but only those in which people complained after 3, 6, 8 months or 1-2 years of mono, then disappeared. I was thinking like...omg, are they dead? What will it happen to me?

Not dead, Paths, WALKING DEAD! 😜

Like Mono, I sometimes tell people it's like having the flu for months on end. Other times, I say I've caught zombieism.

I was refering to the part after they disappear from the internet, maybe because they recover and don't need to complain anymore. At first I thought they didn't come back because they were even worse and unable to write, but then I've found those few who came back after recovery, like Craig did.

Hi Path,

I wouldn't read too much into seeing lots of people come on and post about how they are struggling and then never hear from them again....I guess it's just normal that people look for some hope and help when going through a tough time and when feeling better generally don't come back on.

Some things though like glandular fever had a life changing affect on me, I still vividly remember the fear and the struggling and the worry, and I don't want to see others go through that so understand the posts that people put on here because not many really understand how difficult a virus and illness it can be to deal with, especially because of how it prolongs and seems not to let go for such a long time.

Mono, Path, Sarah and everyone though, just to reassure that you will get better, don't panic if there are tough days because they will get easier and they will disappear completely - just hoping that can come sooner than later for you all, and I believe it will just hang in there.

Craig

Hi Path,

I know how we all so easily turn our thoughts to what can possibly be happening or the cause of anything we see that seems out of the normal.

Think of what you have eaten or taken recently. If you can't come up with anything just be calm and see if it changes back to a normal.

I am a retired RN so I think sometimes it is worse for me. I have to talk out loud to my self with calming words and common sense. With the recovery process being longer than we would like and so many symptoms it is difficult.

Please know God made our bodies to heal themselves. We will be fully well in time. I am beginning my 9th month. I am starting to have a few scattered good days. I keep encouraged by thinking my not so good days are still better than some I have experienced.

FEAR=false evidence appearing real.

You are in my prayers.

Rhonda

Thanks for your encouragement. I've eaten some fatty food, but that was a day and a half ago, so I don't know...

The problem is that the aftermath of mono is just impossible. I've been through symptoms so diverse that it's just crazy, almost all organs reacted in some way, but none of them surgically-serious, just enough to make living a nightmare. Even the heart started going nuts at some time, EKG showed some problems but the echo was ok, so they didn't know what it is. Intestines started hurting and burning at some stage, with a bit of blood in the stool. Mastoid inflammed at some point. Headaches, body-aches, joint pains, dizziness, ringing in ears, muscle twitches and tremors. I've even had urinary incontinence a few days in my second month. Difficult breathing some days. It's like you have nearly every disease possible, this is pure madness.

And then the tests results come and they're like "yeah, a few of them are just a very little bit off, you're ok, c'mon, don't think about these problems anymore, you're pretty healthy, you've just been through some stress and you need rest, fresh air and lots of food and get it out of your mind." Yeah, sure, sure I'm fine, yeah, fresh air and lots of food, why didn't I think of that, yeah, riiight, thanks!"

Path,

You are right. It seems to effects every system in our bodies! I have experienced so many symptoms with varying degrees of severity!

I have had all the symptoms you mentioned plus some. It is very trying in so many ways!

Doctors don't know what to do to help. I did have one gastroenterologist tell me after thousands of dollars worth of testing to not give up it might be the effects of mono. He said I may take two steps forward and one back but not to give up.

Rhonda

Hi Path,

I have also had alot of the symptoms you mention, come to think of it, it started out with a feeling of ear infection with a whooshing noise it lasted two days and then came and went for a couple of weeks, then I found out I had mono, have not had that sensation since. 

Hopefully this is going to came to an end soon, it is so hard because all these strange symptoms cause anxiety.

 

Thanks for your words Rhonda, I find them so uplifting for me too as having a bit of a tough time with foot pain at the moment and it helps just to hear your words too. I do still fully believe in your recovery, and for Mono and Path and everyone on here too. Just want you to know that and just trusting that God will help us through and give us new hope, new strength and healing.

Take care and hang in there

Craig

Mine started as tonsil infection.

My stool is of normal color again and hopefully remains. So I got rid of the fear of pancreas/liver problems (which are serious matter). On the other hand, as I was teaching today, part of my back became numb. I didn't freak out that much, a year ago I would have gone crazy because of something like this. Now I'm used to weird things.

Hi Path,

Glad to hear you are better, I had a good day yesterday and today not so perky, but I guess that is just part of it. We seem to have had it about the same length of time. 

 

Hi Craig,

Sorry to hear you are having foot pain, you have been such an encouragement to all of us, I wish you the best.

Hi Rhonda,

Two steps forward and one back describes this perfectly. Your doctor must have had experience with this illness.

 

Hi Craig,

Hope your foot pain is relieved soon! Would like to know more about what type and how long. You can private message if you want to. You keep us all encouraged! You are appreciated!

Rhonda

Definitely can feel like two steps forward and one step back, in fact it's all kind of things it can be four steps forward and three back sometimes!! But overall you are still moving forward and that's the main thing.

Thanks for the words of encouragement Rhonda and Mono, means so much and thinking about you all today - hang in there everyone, there will be an utter end to this sickness for you I truly believe that!!

Craig

Hi

I was just reading through some older posts and I completely sympathise.

I do too have symptoms from A to Z which buffle everyone and make it hard to believe that I am actually telling truth. And I am too fed up with advice along the lines of 'oh just get it out of your head, go for a walk, drink more'. Wow thanks! Would never think about it myself.

I really do feel for you.