18 months, how I am feeling.

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Hello people of the forum, my name is Nick and it has been 18 months since I started feeling unwell, and 15 months since I got a mono diagnosis. I figure its as good a time as any to give an update as to how things are for me.

Quick back story for people who haven't seen me post, I'm a 28 year old male with a history of allergies and asthma but otherwise quite athletic and energetic. Started feeling a little lower energy summer of 2017, and in August had a period where my heart raced and felt faint coming in to work one day. Developed a sore throat, periods of dizziness, and feeling sped up/"taxed". Missed a few days of work but nothing major. In early November, things were still bad and I was worried what was going on with me. Got all the tests done, even wore a holter device to check my heart rhythms for a week. Heart has always shown up to be healthy on the tests throughout. I suggested it might be mono, they finally tested me for it, and lo and behold I had the Igm positive for recent infection. I got a week off work and several more of reduced hours. November/December of 2017 I felt my worst, and was at my most stressed.

2018, my symptoms waxed and waned at different times. I felt like I was close to full health around June, and proceeded to push things quite hard with a lot of physical activity and travel, which I believe coupled with the summer heat, caused me to have a bit of a relapse and have some weeks of feeling unwell. Also, in October 2018, I seemed to get pretty run down feeling again and actually missed about 5 days of work, but fortunately felt better and got back into things.

Since then, my health has been more steady. I still get taxed/winded more easily than I did before, but it varies on the day. I still get a scratchy throat at times during some days. My allergies seem to have gotten a little more sensitive to indoor allergens. I will occasionally feel periods of spaciness, mild anxiety, and malaise, especially if I overdo exercise, but its not all the time and my fiance always reassures me I complain about these things less frequently.

At my worst back in Winter 2017, I had symptoms of periodic heart racing, sore throat, waking up in the middle of the night with a feeling of malaise and dread, random abdomen and chest pains, thirst, dizziness, sensitivity to sounds, and this feeling of a pulsing in my body, especially in my chest and throat, easily developing canker sores in the mouth.

Nowadays my sleep is much better, I don't wake up feeling ill in the night, maybe just a couple times in the last 6 months, and nothing like back in 2017. Heart racing episodes haven't happened in a number of months. Dizziness/malaise type feelings are more uncommon and usually only last for a couple minutes when they occur. My anxiety is way better, I've realized how many people suffer for over a year with this type of thing, and I know I'm not getting any worse, so I keep a good outlook as much as I can. The body pulsing at night is way less, I've always pictured the pulsing as some colony of mono bugs living in me and going active at night. Anyone feel body pulsing like that around their throat/chest? Anyways, things are good overall. I'd rate myself as about 85% better or something like that. Some days I feel pretty much perfect, some days I have to take it easy.

Here's a few things I accomplished over the last year despite being hindered by this virus.

I got engaged.

I changed jobs from a job that was okay to a job doing something I really enjoy, which is teaching and coaching rock climbing.

I went on several climbing trips, and although my energy wasn't as consistent as it has been in previous years, I was still able to have a great time and overcame my fears of getting sick while traveling.

I worked 30 hours a week or more consistently all year except for one period in October where I missed five days.

Around Christmas, I took a trip to Guam to meet my fiance's extended family. Despite 14 hours of flying, a sleepless night in an airport, and all the stress of travel and adjusting to a way hotter climate, I made it, I was able to do active stuff almost the entire trip. There were times when I felt a bit overtaxed, but nothing bad came out of it all.

I mention those things to try and offer hope to people suffering currently. And I want to say that even if you're not back to 100%, I think its really valuable to try and engage with life and get back out there as best you can. On all the trips I took, I would have apprehension about committing to them, but now I'm glad I did all of them because they were great experiences even if I didn't always feel perfect the whole time. I realize my case of mono is a lot more mild than some of those suffering out there. When I say I get sick if I overdo exercise, that means overdoing difficult rock climbing. Most of my friends can't tell anything is ill with me, I appear very fit and healthy, but I know there's still something dogging me at times.

But still, I say this because I'd like to think there is a well of strength in us that we can draw from. If I always let my fears get the best of me, I would never have done some of the meaningful things I've done this year for fear of getting sicker. But I did, and am glad I did. So I hope that might be some food for thought for someone out there.

The things that have helped the most are going to sleep at a good time and not looking at screens before bed, eating foods you make at home, not packaged food or restaurant food, meditation, and being around good people and laughing and smiling. Sounds sappy but its so true. A good friend can make you feel so much better a moment after you felt meh. I believe I am continuing to heal. I have read many accounts of fellow athletes who got dogged by something like mono or just some fatigue period in their life that lasted a year, two years, three years, before disappearing in its own mysterious timing. Its crazy how many stories are out there!

Anyway, thanks for whoever read, I hope this can be a source of hope to some. Will probably write another update in another 6 months or so.

Nick

1 like, 14 replies

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14 Replies

  • Posted

    Hello Nick,

    It is great to see a post from you. Many thanks for your inspirational post, there is definitely lots in there that people going through the tough end of mono right now can draw real hope and heart from you, and lots of wisdom and great advice!

    Definitely don't minimise the case of mono that you have had Nick, it is an awful awful virus and you showed great courage and determination to be able to achieve and do all those great things you listed during the time you have not been feeling yourself. And absolutely want to reassure you that your body will continue to get better and stronger and more resilient as time goes on, after 18 months I was also doing a good bit better but still fragile and in recovery mode really with some less intense / temporary setbacks at times - but things continued to get better over the next year or so after that Nick and you will get to the stage where you feel fully fit and well again and your body is able to cope with a normal level of activity again and push itself more without suffering afterwards for it.

    It definitely sounds like you've been doing all the right things and taken the right attitude, which is not at all easy when going through this and coping with the longevity and the ups and downs. So good on you Nick, you should take real heart from the progress you've made and glad that things have been more stable lately, and remember further improvements will come as time goes on and very much hoping for a year of recovery, breakthrough and good health for you in 2019!

    Craig

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    • Posted

      Hey Craig, thanks for reading and replying. Yeah I've been reading online stories of runners who had bad cases of mono and went on to have their performance inhibited for a couple years, and many of them said that the thing just gradually faded away for an unknown reason. I think there is some kind of component of overtraining that may have been going on with me. I was going really hard and perhaps not giving myself optimal rest. It was also 100 degree days in the weeks leading up to me falling ill. I think I was asking for some kind of ailment to befall me. I'm slowly learning how to better pace myself.

      Hope you are well.

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    • Posted

      Nick , I completely agree with you . I feel i did the same thing to bring on the horrible virus . I was building a company , getting very little sleep , stressed to the max and working out to hard . It all caught up to me and now I have been ill for a full year .

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    • Posted

      Thanks Nick,

      Yeah absolutely - at the time I took mono, in my mid 20s, my body was in a fit and healthy condition, I did a lot of long distance running and like the rest of us on here was really struck down and had to step back from all that and live a much more simple life for quite a period.

      However I was able to get back to running after some time Nick so really want to reassure you regarding that, and definitely this virus does lose its sting and your body gets it under control and kicks it out for good eventually. Roger Black is a great story to read of an elite athlete who was struck down by mono but managed to get through it will some time and back to top level competition again.

      Thanks for the best wishes too Nick, I've still been having some ups and downs with some health issues / injuries and just hoping and praying God can strengthen us and heal us all!

      Craig

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    • Posted

      Hi Dave,

      It's something EVERYONE does especially during the early stages of this virus is try to keep going and push through - I did too and it's only natural because you don't know initially how nasty it is going to be and how much your body needs rest.

      But absolutely please be assured this will not affect or prevent you from making a full recovery Dave, your body does get over this and if you can try to remove stress as much as possible (hard as it is given this virus causes so much stress in itself) and just keep listening to your body and resting when you need to. I still really believe this is going to be a year of recovery for you, hang in there.

      Craig

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  • Posted

    Hey Nick! We are almost on the same timeline. It is so great to hear someone has mostly recovered! It gives me hope! The most I can do is a grocery run. Anything more physical than that and I relapse bad. Although, I'm seeing a Lyme doc because it's looking like I got Lyme which triggered the EBV to reactivate and then cause mono. So while the mono passed, the lyme didnt. I'm hoping to finally get a diagnosis and can start treatment. I'm pretty sick at the moment. But I hear you about surrounding yourself with friends. Mine have been extremely supportive.

    I hope you continue your path to full healing!

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    • Posted

      Hey Lisa thanks for the reply. Yeah i know we are from the same region too, always wondered if we caught the same bad strain or something. I'm glad you can at least get out of the house, thats something. Its such a mystery trying to figure out all the factors. i've seen a couple naturopaths and honestly cant say theyve helped me much. the whole vague mystery flulike illnesses whether its mono, lyme, mold, heavy metals, adrenal stuff, nervous system stuff, its all so hard to get concrete answers and diagnoses about. a clean lifestyle with fresh air, whole foods, limited screen exposure, and early bed times helps me more than any supplement or test result ive recieved. please keep hope and know people who have been sick longer still recover.

      thanks for the well wishes, hope you can make more actress appearences soon.

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    • Posted

      Hi Lisa,

      What an awful time you've been through and so sorry to hear that you're possibly dealing with Lyme as well as mono, just wanted you to know I was thinking about you and will keep you in my thoughts and prayers.

      I don't know too much about Lyme's disease but I know it must be a horrible thing to go through as well as the mono, and I just hope that the doctors are being helpful and supportive and giving you all the medication / treatment that can hopefully improve things and lead to full and complete recovery.

      And remember there is ALWAYS hope because of God Lisa, He is the great healer and physician and I still have faith that you are going to get through this and back to good and full health again, even if it takes a little bit more time, hang in there and I have faith that the Lord is going to pull you through this.

      Craig

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    • Posted

      Hey Craig- thank you for the encouragement! Yes- if I have Lyme as well it'll be tough. But also a relief that there is something else going on. This just feels too long to keep having the same symptoms over and over again. I'm getting into a specialist in the next week or so. So praying for some insight!

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    • Posted

      That's really great advice about disconnecting from screen time. It's hard when you are sick at home all of the time. We are having a big snowstorm this week so I'm going to try and get out in it as much as I can!

      I've definitely been in that mold/lyme/fibro/cfs loop for months and months. It is totally maddening.

      I will keep you in my thoughts as a beacon of hope!!

      I actually have three films slated this year. It's funny- when I"m trying not to work the work comes to me. Hoping I'm not overdoing it but if I don't get out and get creative I go crazy. I'm just planning lots of downtime in between projects.

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    • Posted

      Definitely Lisa I will say a prayer that your appointment with the specialist goes well and aim to keep you in my thoughts and prayers over this coming period. I still believe that whatever is going on that you are going to get through this and back to health again, thinking about you and please do keep in touch and let us know how you get on next week.

      Craig

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  • Posted

    thanks for the update and so glad to see that you are doing well and at least enjoying life again !

    i too was a major workout freak superfit but then got very sick ...im at month 10 and miss my workouts so much . ive often thought about the future and how im going to get back into my workouts without fear ... i will do it slowly gradually when im feeling more stable .

    i also want to travel back home to Uk which im sure wont be anytime soon .

    when did you see a turnaround ? and at what month did you get back into exercise ?

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    • Posted

      Hey Lori,

      yeah I'm really fortunate that I was never fully knocked out of life by this thing. I don't know what I'd do without the ability to climb or at least move my body, its such a source of inspiration and mental well-being for me. Are you able to do gently yoga/chi gong movements at least? Those helped me too when I felt especially bad.

      Lets see, my timeline is I felt sick in August 2017, kept pushing because I thought what I had was a basic flu, got gradually worse till November when I got diagnosed, finally rested from all work and activity for a week, then went back on reduced hours at work and climbed less intensely for a few weeks. I started feeling better more consistently in March or so of last year, and felt almost normal in June before overdoing it with a big trip. Since then I've been a little up and down, still working and climbing but having to pace myself. In October I got sick and missed five days of work, felt like mono maybe with another virus piggybacking. Since October, I've been mostly pretty good unless I overdo it to much. So I really didn't take any extended time off of exercising except for a couple weeks after I got diagnosed. I used to fear that if I stopped exercising, that I'd atrophy away and become worse or something. I get winded if I overdo exercise, but if I do it just right it feels good. I realize our situations are a bit different, but thats how my experience has been. I think early on I probably made things worse by continuing to exercise, because I didn't know better. But at this point I'd like to think it helps get my blood moving and keeping my energy and mood up. Its also part of my job as a climbing instructor and coach, so I do the best I can.

      Hope you continue to feel better.

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    • Posted

      yes i completely understand and the funny thing is when i got diagnosed at 5 months i stopped working out and thats when i became really sick.

      although very dizzy i kept running doing weights my normal workout as i love it and makes me feel so good .

      who knows with this strange virus if exercise can actually make it better as youre sweating out toxins.

      for now im just doing a long walk and have gradually built up my distance .

      everybody says rest rest rest but honestly felt better working out !

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