2.5 years on from Mono diagnosis. A bit of my story and update.

Posted , 6 users are following.

Hi all.

I used to frequent these forums about 2 years ago when I was at my worse. I wanted to leave my thoughts and a bit of my story to inspire and encourage.

June 2016 i was rocked with ebv infection. I stricken with what seemed like the worse case scenario of the virus. i could not recognize myself in photos from Iraq (im a war vet). i would call my daughter her middle name forgetting her first. I couldnt perform basic math. i had occasional OCD symptoms including false memories and a fear of touching knives thinking id hurt someone. i had tons of physical symptoms ranging from leg twitches to lip numbness. i couldnt walk too much without feeling the need to pass out. over all i was a complete mess.

my official diagnosis was ebv infection leading to viral encephalopathy. I had a dozens of scans and and blood work showing i was super healthy and normal. but my brain clearly wasnt.

today I continue to perform working for a company with demanding quality requirements in the arts. I have found a hobby that allows me to be social while also creative. I still have brain fog and huge memory issues but have found tricks to remembering things (putting my keys on something i want to bring to work or writing on everything). I still feel disassociated from "life" and my environment sometimes sitting on my couch at night forgetting what i did that very day.

over all i just want you to know if youre entering this forum with a new diagnosis that you will get better. life is different post infection. i remember getting my PTSD diagnosis and the drs saying "the old you is gone." That doesnt mean there isnt going yo be joy in finding the new you. If your body needs rest... rest! if you feel foggy let your brain fog out. i promise you the spirit of our body fights for you and things do get better. adapt to the changes but dont let them control you. I have two Beauitful kids and despite all ive gone through, ive fought every day to smile for myself and them. youre going to have some very bad days but aleays know the good ones are coming.

and a special shoutout to craig who was instrumental in saving my life when those dark days were upon me. i found this forum after my then 4 year old son came into my room as i laid in bed without a diagnosis thinking i was actually dying. i stopped him from giving me a kiss in fear he could get what i had... instead he grabbed my whole arm, hugged it tight and kissed my hand and said "youll be fine daddy dont worry." i cried for about a half hour after and opened my phone. craig and many others gave their stories and motivation to get better. better days are always ahead!

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8 Replies

  • Posted

    Wish you health life a head .some of your described symptoms are also in me .I have sore throat and white tongue for year now .doctors are unable to diagnose .my mind hanged on hiv or cancer.I don't know want to do next .

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    • Posted

      Hi Ravi,

      I am definitely thinking about you also and don't hesitate in any way to go back to the doctor and ask them for any tests, blood tests, whatever, that I do hope can offer reassurance and put your mind at rest that there is not anything more serious than mono going on.

      Remember if it is mono or a similar type virus, it is normal that it can take a year or longer for recovery to happen, but it doesn't mean that recovery won't happen and you won't get better - it is an awful virus and just takes time unfortunately - hoping and praying for things to get better Ravi and do not hesitate to keep seeing the doctor as often as you need to and let us know how things are going - remember get rest too and be kind to yourself, and remember God is the great healer, I believe He is going to help you through and get well again Ravi, hang in there.

      Craig

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  • Posted

    Hi Jeffrey,

    It really is great to see a post from you and thanks for taking the time to update and encourage me and others - it really is very much appreciated!! I am grateful for your kind words Jeffrey, especially as I've had some tough times in the last 18 months too with back pain, prostatitis and losing my job and trying to come to terms with these things too and move on - but I'm lucky too I know my problems are not much compared to many other people and God has been helping me every day. I loved your line about how your body's spirit keeps fighting for you, that's the Holy Spirit I believe Jeffrey, keeping fighting for us and helping us when we are in our darkest moments and deepest trouble, I've experienced that help too and so grateful for it.

    What comes over so strongly in your story Jeffrey is how much courage you've shown and how you've kept pressing on and not giving up despite I can only imagine it being so tough at times. Trust me Jeffrey you will be an inspiration to your young son, especially as he grows older and realises what you've had to go through and how you've still been there for him always.

    And Jeffrey even though things maybe still not perfect today and still finding it tough with the brain fog and in some of the things you've been facing, please know and remember there is still hope and there is still improvement, recovery and better times ahead. I know from my mono that I felt even better after 5 years than I did after 2.5 years for example, even though I was doing a good bit better after 2.5 years. So it doesn't mean the recovery journey has ended or things now are always going to be as they are, I still believe there is hope and believe in God and that He has good and amazing plans ahead for your life still Jeffrey, so hang in there and just continue to take things a day at a time and remember and take heart all the progress you have made.

    Hoping and praying this can be a year of hope, recovery, breakthrough and many blessings for you and your family Jeffrey - thanks so much again for the kind and encouraging words for me, that helps a lot right now as things been a bit up and down for me too and trying to find my way with things again too - thanks Jeffrey it really is appreciated. And definitely for others going through the hardest times of this virus, there is real hope to be taken from your story and hoping others can read it and take strength and courage from your experience and how you have started to move on again (and believe me Jeffrey what's happened now is the beginning - your recovery is going to keep happening and improvements will come and God willing you won't have to go through anything like this last couple of years again, I truly believe that). Hoping you are feeling well today and thanks for the reminder and encouragement to keep fighting and that there is hope for the future for everyone on here!

    Craig

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  • Posted

    This is a truly inspiring story. Thank you for sharing. It gives us hope and s different perspective. You are right, we have to do the best with what we have, and our new normal.

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  • Posted

    Your story is exactly what happened to me. Same time frame for infection and everything. I am still struggling with various symptoms today. I am still having a hard time accepting the changes that EBV brought to my life.

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    • Posted

      Hi Brent,

      I was just wondering how you were doing this week, still been thinking about you and keeping you in my prayers. Even if your weak and weary right now Brent, hang in there because others are praying for you and holding strong to faith for your recovery even when it's so understandably hard for you to at times with what's been going on for so long.

      Just hoping and praying for a better 2019 ahead for you. I haven't listened to all this video yet but it is just some comforting and reassuring words from God that might be good to listen to especially when finding things really hard - https://www.youtube.com/watch?v=imJZlhOsPKM.

      Hoping for a settled weekend for you and hang in there Brent - things are going to change for the better in your life I still believe that truly.

      Craig

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    • Posted

      Craig thank you for everything that you have done. I hope everything is getting better for you. I would not have made it if it were not for you. You are a God sent. I am beginning to see more improvement. I had so much happen to me so fast. I actually went out with my Church tonight to visit some people. It felt good. I haven't done that in a long time. When I found this site I was on the verge of ending it all. You have been here the whole time saying that it will get better. it has been slow, but it is getting better. THANK YOU. You have really made a difference in my life.

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    • Posted

      Hi Brent,

      That is such a kind and heartfelt thing for you to say, it really is very humbling and kind of you. It's not me though Brent it's you that has been helping yourself, I've only tried to encourage people on the forum here because I just remember what an awful thing it was for me to go through myself and how much support and encouragement I needed at that time - and without others and God of course I wouldn't have managed to get through it.

      That was amazing you made it out with your Church and to visit some people - that is a real step forward and hoping you are not feeling too tired today for it. Remember just get rest too when you need to. So glad to hear that you have been seeing some improvements, I definitely think you've been too hard on yourself at times and remember this thing is not your fault or anyone's fault, it's just an awful illness, but I still believing something is happening Brent and God is working on a turnaround in your health and life circumstances - you've been through so much and He knows that and is there for you.

      Don't give up Brent, hang in there, there's better times ahead for you I feel CERTAIN of that thanks to God. And thanks so much for your kindness and support for me too, it means so much!

      Craig

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