My One Year Since Getting Mono Update
Posted , 14 users are following.
Hello all! I wrote a post about a week ago but I had intended on doing one on this day for awhile now, so here goes.
Spring and Summer 2017 I had been pushing hard. I rock climb, its my passion (I currently work at a gym doing instruction and other things.) It is a very demanding sport, but I love it. Anyway, I was climbing about five days a week, often outside, in increasingly hot conditions. In July I started experiencing a weird sensation in my throat once every few days. A weird, vibrating feeling that almost felt like I was gargling. I'd never experienced a sensation like it. Thought, maybe its a muscle spasm or maybe I'm getting sick. Now I think it was the virus incubating or something.
August 1st, 2017. Its hot, there are wildfires messing up the air, I'm out playing disc golf before work. As I get to work I feel like my heart is beating faster and more noticeably than normal. I go in the cooler to cool off (grocery store) and feel slightly better. Over the next few days, I get dizziness, flu-like feelings, a sore throat and occasional bouts of a brief racing heart. Tacking it up to the flu or something, I press on. I go on a trip to Canada that I'd scheduled months before that I'd been looking forward to. Climbed for four days despite frequent bouts of dizziness, faintness, exhaustion after climbing. August continues on and I continue to experience intermittent symptoms like this. I go to a Naturopath and he thinks I have a combination of allergies and a low grade virus. I get essential oil blends for immune health.
September, sick feeling at times but still taking climbing trips and going to the gym frequently. October is the same. End of October I get a racing heart at work and feel panicky, fluey, unwell. Halloween I drag myself to the local climbing spot and manage to do my most difficult route ever, knowing it'll be rain for months after that day. It takes so much out of me I'm severely exhausted. I make an appointment to a GP and get tests done. At first all they can find is my blood pressure reads a bit high. I insist I get tested for mono because after scouring online its the only thing that roughly matches my symptoms and duration. A few nights later I wake up feeling very flu-like, heart racing, feel panicked and unwell. That morning I go to an urgent care, who have me go the the ED. I get my chest x-rayed and get an appointment with a cardiologist. I eventually get to wear a holter device for two weeks that takes readings of my heart. That came out normal, they said. Chest x-ray normal. They prescribe me a low dose medicine for blood pressure which I take for two rounds and then stop. A few days after the ED visit I get the results that I have a recent EBV infection and I have mono. I am relieved to have a diagnosis. I am granted a week off of work and then reduced hours for several weeks after.
The next few months I experience all manner of symptoms, I make it to work all but a handful of days, and I experience gradual, cyclical improvement.
On New Years Eve, I go to a movie with my girlfriend and almost have to leave because the dark room and loud noises from the theater overwhelm my system.
Mid February I wake up weak and lethargic, yet manage to get myself to an endurance climbing competition at my local gym and get second place out of over 100.
March I go on a five day trip to Bishop, California to climb. I am nervous to be away from my girlfriend and be camped out in the desert in case I start feeling ill out there. I feel very flu-like on the long car ride over and have visions of asking my friends to drop me off and let me catch a plane home. But it passes and I commit to the trip. I am weaker than I used to be outdoors but I still have fun and stick it out.
April I get engaged. I have mostly good days in April.
May I go on the Whole 30, eat very healthily for a month. I also quit my old job and started at the climbing gym. I feel mostly good this month too, just a few moments in a few days a week where the flu-like feelings come into my head.
June I eat crappily after all the diligence of May. I feel like my climbing performance is almost back to where it was the previous year. The one big bummer is I'm noticing I have a mysterious allergy in my living room of my apartment. We try everything, carpet cleaning, dehumidifier, expensive purifier, fans, cleaning every inch of the wall. Landlord swears we shouldn't have mold, its not an old building. No sign of major water damage really, and no one feels anything but me. I lived here for almost five years without this sensation. Its like mono exacerbated my allergies.
Then July. Fresh off another four day climbing trip, I continue the high pace. Its summer, its heating up. On July 4th, after ten days straight of climbing, I start feeling rather bleh. I try to take it easier, but it seems like my high pace and lazy diet is catching up with me. One night I wake up middle of the night with the malaise, which hasn't happened since like December or so. We have a heat wave mid month, and one day after work I'm driving home, its so hot and I feel so stressed, and I get the racing heart feeling again for the first time since November or December. Needless to say, I'm discouraged. I'm worried I overdid things and in combination with the heat suffered a major relapse. I call in sick one day in July, and barely make it through a couple others. As I realize the potential severity of what has happened, I scale back my climbing like crazy. I know it sounds crazy to you guys, but the longest I had gone without climbing this whole year was 7 days back when I first got diagnosed. The doctor had checked my spleen and said I was okay to exercise. So I'm back on the horse of eating healthier, and resting more from climbing than I have all year. The last two days I've felt a lot better than the previous three weeks. I'm rally hoping its just a bump in the road.
So as you can see, I've lived a pretty functional life this year, though I've had at least some symptom of this virus almost every day. It hasn't kept me from living life, but it has given me a lot of suffering and stress. I think I'm finally understanding the need to take it slow and look into the future, that I will have years ahead to give things my all, but I need to scale back if I want to be rid of this thing for good. I believe that I will get over this thing for good. I appreciate all on here who have given me encouragement. Anyone who has a question or comment I'm happy to talk to.
Thank you,
Nick
0 likes, 68 replies
craig07920 MonorailNick
Posted
Hi NIck,
Just want to say thanks for taking the time to post such a detailed and insightful account of your experience of mono, even writing that must have been painful thinking back at some of the real lows and times of worry and depression in the last year - but I definitely believe your story can help and support others going through the same.
Similar to the other guys I am amazed you've been able to keep climbing - you've shown such courage and resilience to keep going this year, and yes remember that by resting or slowing down or taking a step back it's not in any way admitting defeat - in fact the very opposite I believe you will feel the benefit from doing that and if you even go with the mindset that you would if you have an injury that maybe would have you out of action for 6 months or something - a terrible blow and very depressing, but something that you know you will get back to once the injury has healed.
Congratulations too on your engagement and hoping that can be the positive and lasting thing to come out of this tough year for you - I definitely believe you are going to get better and see your character and determination shine through in your message - hang in there and remember resting isn't quitting or giving up or being lazy - it's very much a key part of the recovery process with this thing, frustrating as it is when you're someone used to being so active and enjoying exercise - I was a runner and had to take time out when I had mono but I did get back to it after some time again. Hoping and praying things get better Nick and thinking about you!!
Craig
P.S. Have you ever tried Bowen therapy - that has helped me for sure with various ailments over various years
P.P.S. B100 vitamin and Co-enzyme Q10 are tremendous for energy levels
r20213 MonorailNick
Posted
Hello Nick,
Congratulations that you got engaged. Its really great that you have been able to continue near normal life despite the illness. I really appreciate that you have decided to pace your self, which will surely have long term benefits. I too have been working through my tiredness and fatigue thinking it will go away one day. But it kept coming back. I too used to get good and bad days.
Anyways now I have also decided to take some time off of work and rest a bit. For the past two weeks I am feeling better but. I feel good about 80-85% most part of the day. But sometimes there is this "something is just not right" kind of feeling even though I manage to cooking shopping etc.
I try to be positive as much as I can even though it can be hard some times. I find mindful meditation very helpful to deal with negative thoughts. I take chamomile tea in the evening to keep me calm and relaxed.I also read and watch a lot of Netflix and listen to soothing music to distract my self from negativity. I believe positive mindset can speed up your recovery.
I am also going to get engaged soon. I wish and pray for you complete recovery.
Thanks,
RD
craig07920 r20213
Posted
Hey RD,
That sounds like some really great advice and really hoping and believing that things will continue to get better and stronger for you - it is such a nasty and resilient virus this one, but eventually over time it does get beaten by your body and you get to a stage where you don't have that horrible 'something not right feeling' and you do feel like you can cope with doing activities without dreading how it will make you feel later or the next day or whatever.
Good luck with your engagement also RD and thinking about you and truly believing in your recovery - trusting God with that one and believing that the worst of this is by for you and healthier and happier times ahead. I reached that stage of being 80% or so and thought maybe this is going to be the best it gets and will have to adapt to a different kind of life, but want to reassure you that things over time do progress (that was my experience anyway) and with God's help I believe you will reach 100% or as near as again - hang in there!
Craig
youngboy238 r20213
Posted
Great words to nick, also I believe you are close to the finish line. Keep hanging in there you are getting closer and closer! You will take these final steps and become fully healthy again!
r20213 craig07920
Posted
Thank you very much for you positive encouragement and support. I really appreciate your help and reassurance in this forum.
Thanks,
RD
r20213 youngboy238
Posted
I read from you are post that you had a setback but please do not worry much and try to keep a positive mindset. Try to do some reading or some online course. When you recover from this illness you can look back at the dark days and still see the achievements you accomplished.
I pray for your speedy recovery,
I am also using a homeopathic remedy called echinacea 200C which was suggested by my mothers doctor. I cannot comment on it yet. But I feel some improvement after using it. I take 10 drops of it with water in the morning and afternoon. I am also taking 1000 mg C vitamin suggested by Craig twice a day.
Thanks,
RD
MonorailNick r20213
Posted
Thanks for the reply and words of encouragement. Congrats on your imminent engagement as well, that’s so cool in a weird way, this illness may have helped me really realize how much my girlfriend means to me and how much she cares for me. I wish you the best in that.
Yeah I have been a long time meditator though with varying levels of consistency. It can help the mindset a ton. You’re pretty recent compared to a lot of ya with how long you’ve been sick. It’s hard but really good to find that balance between determination to get better with patience in not knowing how long it may take. I wish you all the best
craig07920 r20213
Posted
Thanks RD, I know it's so hard to keep positive and optimistic in the midst of this horrible illness. The dark days of this can be so painful and hurtful, but definitely once you are fully recovered you will be able to look back with gratitude and relief that it is behind you and be able to fully get on with your life again - that time will definitely come hang in there!
Craig
lori93950 r20213
Posted
You just can’t help it when the fatigue is so bad and you just want to cry or shout at God for this crazy virus .
chris44315 MonorailNick
Posted
I’ve been reading these discussions and have found them extremely encouraging. I contracted mono sometime around the end of April. I noticed symptoms towards the beginning of June and have been off work since then. I thought I just had a cold or flu back in June but after going to urgent care and doing blood work I realized I had mononucleosis. I received a shot to prevent me from having cold sweats, fever and sore throat. On July 21st I went to do another blood test and found out I no longer have mononucleosis or at least it’s no longer reactive. It is now going on a month since I have tested negative for the mono and my energy levels have gone back up, I run/walk twice per day and even started to get back into the gym. I have headaches and suffer from the anxiety. I’m wanted to ask for those who have beaten this sickness, what were the last couple of days/weeks like before feeling back to normal? How do you know when it’s almost over?
Thanks,
Chris
craig07920 chris44315
Posted
Hi Chris,
So sorry to hear that you've had such a tough time with mono with last few months. Definitely empathising having went through a bad time with it many years ago. I'm glad that you are seeing some improvement now and starting to get back to normal activities, really hoping and praying things continue to improve until you feel 100% again - that will happen Chris, it can take a bit of time.
I think everyone's experience of the virus is very personal and individual to them, so I guess when you're recovering or recovered you just go by how you feel and if your body feels better than before and with more resilience to cope with things that I know can be taken away during the virus. Remember still take things very slowly, even if feeling better, and manage activity because even when feeling better some symptoms and fatigue can try to linger if you do too much too soon or overdo it - so just be wise and patient, hard as it is I know when you just want to get on with normal life again!
Taking vitamins and herbs helped me during my recovery, a good strong multi-vitamin per day, high doses of Vitamin C (1000mg-3000mg per day), B complex (great for nervous system and energy levels) and immune boosting herbs like siberian ginseng and echinicea and oregano.
And most of important of all remember this virus does get completely better, and that you will get back to 100% or as near as again, even if it's only 70 or 80% or whatever now, things will continue to improve over time - hang in there and thinking about you!
Craig
lori93950 chris44315
Posted
I’ve just been diagnosed after 6 months of fatigue . Im trying to rest and only do long walks instead of intense runs and weights .
I just wondered as you say you’re back exercising .... are you nervous it’s going to come back ?
Exercising is my life but now I’m nervous that when and I’ll say WHEN I do get better I’ll have the phobia that it’s going to come back if I workout too hard .
lori93950 MonorailNick
Posted
MonorailNick lori93950
Posted
Hey Lori,
I wish I had a certain answer to this question of yours. Throughout this saga in my life, I’ve been fortunate that I’ve only been too ill to climb in some form for a few weeks total of this year. I’ve tried to keep it in my life as much as possible. For one, it’s part of my job as I am a coach and an instructor for climbing. However, I am realizing that I have to be careful about not overdoing it or I can trigger symptoms to come back. Like I wrote, I felt 90 percent over this coming into July, but after an intense trip and about ten days without proper rest, I believe I reawakened the thing and dealt with renewed symptoms that have only just begun to settle back down. I used to be able to climb five or six days of the week. Admittedly this is more that the average person takes on. I think five years of that may have slowly been taking its toll on me. Now, if I don’t rest every other day it tends to bite me. I have been feeling good the last couple of weeks, but I went three days in a row the past three days and didn’t sleep te best this morning because I had to take my fiancé somewhere early morning, and today I’ve been feeling a hot neck, easily fatigued, like my heart will ramp up just getting out of bed too quickly. It’s been a couple hour spell and now I’m feeling better and I have to work at 4 so I’m hoping I’ll be all good.
Anyway, I’ve always believed exercise is almost always a good piece of being healthy, but this virus thing has taught me that I need to be careful not to overuse it. I have to exercise about half to a third as much of what I could tolerate before in order to not get symptoms coming back, though when I’m feeling well I’m actually climbing pretty much as strong as I ever have, so that’s good at least.
Feel it out, and try to stop exercising before oh start feeling too hot or dizzy or anything like that. Feel better!
MonorailNick
Posted
lori93950 MonorailNick
Posted
Yes before this virus I worked out 2 months straight no days off ... I’ve never done that before and for some reason I just didn’t get tired., I actually felt the best I’ve ever felt in a long time . Then come April I crashed ... hard.
Continued anyway with the intense workouts as always felt great afterwards even tired. So now trying this method ... just walking which is pretty boring .
I’m sure once this is over I will get my confidence back ... but the thought that it could come back scares the hell out of me .
craig07920 lori93950
Posted
Hi Lori,
Been reading your messages across the different threads, and just want to let you know I empathise having been through such a hard time with the virus myself many years ago. It is such a painful and draining thing physically, mentally and emotionally to go through, words can't describe I know. One way I liken it looking back is to a physical version of a mental breakdown, where your body all of a sudden it seems just can't cope with the simple things it used to do very easily.
I absolutely want to reassure you Lori that this thing DOES get better. At 6 months I was at a very similar stage to you, not feeling much better at all and feeling so weary and drained both mentally and physically, wondering if things would ever change and feeling discouraged often. If your doc or anyone has said CFS to you, absolutely I would question that because there is a major difference between CFS and post viral fatigue, which I think doctors too often dismiss and don't pick up on (I'm not a medical person just my own views having read lots of accounts of this virus and experienced it myself).
Because this virus has been going on for 6 months, it DOESN'T mean that CFS is at hand, post viral is the extended recovery time which causes the mono illness to be so intense and horrible for so long, but it DOES go away and get better with time. I know that doesn't help much when in the midst and going through it, for me it took 10 months to see a major breakthrough and turning point, God brought me through and brought healing - it took some time to build my confidence and work up again after that still but I did get there, thanks to God only, and that was 12 years ago now since I was unwell with the virus. I just want you to know there is hope and what you're going through is classic mono and recovery will come, even if it still takes a little time it will come (everyone is different, some seem to recover quicker than others) - absolutely it will.
Also definitely think you're being WAY too hard on yourself, by working through and trying to keep going at the beginning especially is something EVERYONE does with this virus. I did it too and you haven't done anything wrong or caused delayed recovery or whatever, it is just something you learn with experience and time needs managed and proper rest, but you will get there and remember this is not your fault and the frustration / anger was something I went through too and just hoping and praying for a breakthrough and turning point soon Lori - thinking about you and remember you ARE going to get better from this!! It sounds like you have been doing all the right things to help yourself and that takes courage and you should be pleased with yourself for that, and you will get there!! Message any time!
Craig
craig07920 MonorailNick
Posted
Hi Nick,
It is good to see a post from you, that battle you are going through with wanting to and trying to physically fit and active whilst dealing with the recovery of this virus is such a hard one I know and definitely empathising as someone who was a regular runner competing in events and things, reduced to not managing much at all for quite a while during and whilst recovering from this virus.
I still believe you are going to get there, these kind of ups and downs go hand in hand during recovery, so remember they are just temporary set backs and overall you will get there and reach a stage where your body resilience is fully back again and can cope with physical activity and exercise like it did before - I never thought that would come for me the way I felt during the virus but it did come as time moved forward, and that didn't mean that I didn't have setbacks or times where it felt like it was going in the wrong direction again like what you've had lately too - but you will get back on track and get there Nick, believe me - I truly believe that.
Thinking you and good luck with your climbing, sounds way too dangerous for someone like me who likes to keep his feed well on the ground lol!
Craig
lori93950 craig07920
Posted
My life was always very simple I love to workout eat healthy maybe socialize now and again .... that’s it .
It’s not like I’m getting drunk eating junk food staying out late so always ask ‘why me ?’
Having just got divorced it’s all been ‘too much ‘ and with no family around and only a few friends it’s been tough.
Am I going to live in fear of this ‘thing’ the rest of my life ????
craig07920 lori93950
Posted
Hey Lori,
I know it's so difficult to understand why these things happen, why good people have to go through hard times, wish we understood better. I do believe God is a good God and He knows and understands what you're going through and has a good reason for it, it might be a new beginning or something marvellous when all this is over. It's the enemy and not God that is the architect of such suffering, God is a good and healing God and I absolutely believe He is going to pull you through Lori, it's not easy to hold onto hope though when it doesn't happen right away or even after an extended period, but I still believe you are going to recover and get better again - absolutely I believe that!!
So sorry to hear you've had to go through this at the same time as divorce and without family for support and help - goodness knows how tough that must be. There is absolutely a clear link between stress and this virus - it came on me too after a particularly stressful period of my life.
The fear and power of this virus will be broken Lori, believe me it will. And I know it can only help so far but in terms of the supportive network of this forum you're not going to be on your own and can always come on and message if finding things particularly tough. Not saying I can do or say much at all but you can message any time and I certainly do empathise having gone through a real low time with this myself.
Thinking about you Lori and I'm hoping the friends you have are understanding and supportive - it makes such a difference if you can talk with someone it really does. And remember you ARE going to get through this and get well again - I 100% believe that and even if you're struggling to believe it right now and have the faith, I have that that faith for you right now and God knows the situation and still has a good and great plan for your life and needs you well for that!
Craig
lori93950 craig07920
Posted
And yes! Trying to think everything happens for a reason we sometimes don’t see why for a while but I’m sure there’s a message from God within all this .
craig07920 lori93950
Posted
Absolutely there is a reason for this happening Lori and it might well just the start of an amazing new phase and beginning in your life, God is the master at turning desperate and awful situations around for good so hang in there!
Yeah it's hard to communicate fully and effectively to others how badly this thing affects you, it is invisible in that people see you and you might look fine or be seen doing things or out or whatever, and they assume it can't be that bad. If only they knew how it makes you feel! Glad that you have some good friends, hold them close to you and hoping they can be there for you at this time.
Craig
lori93950 craig07920
Posted
Yes a friend came over and said you look ok ? I’m like ‘I feel like crap’
The friends are few and far between when it comes to illness ... they seem to go missing as most people just want to ‘go out’ ‘have fun’
That’s ok I’ll put this feather in my cap and hopefully will grow from this .
It has been like solitary confinement but I do have a very cute loving kitty lots of tv channels a roof and a bed ... so I’m sucking it up! I do go a bit stir crazy sometimes though 😫
craig07920 lori93950
Posted
Hey Lori,
That is not so good to hear that your friends go missing in times of need, sometimes it's these really hard times you realise who your true friends are for sure. After all there will come a time where they need you and their friends too.
Oh that's nice you have a kitten hope that brings you some joy at least. Yes Lori I know I'm guilty we all are we forget and take for granted the things we have and forget there are others without the basics and everything. It doesn't make your situation any easier though, but it is important of course we are grateful for all mercies, I need to be more so too.
Thinking about you and yes you are going to grow and get strong from this Lori, hoping for a better weekend.
Craig
lori93950 craig07920
Posted
And I realize people don’t want to be around a ‘downer’ person they want to be uplifted so I accept that too.
This has been a lesson of acceptance for me all around .
craig07920 lori93950
Posted
It’s not easy I know, wish we could understand why these things happen.
I know what you mean about a lesson of acceptance and surrender, sometimes we just have to say we not know what’s going on or why but that we need God and can’t do it on our own. I’m learning my own lessons with stuff at the moment too it’s not easy.
Thinking about you still and hoping for a better weeks ahead Lori.
Craig
lori93950 craig07920
Posted
craig07920 lori93950
Posted
The main thing is you're not giving up Lori.....and not giving up doesn't always mean being right in the face of the problem and pushing hard against it, sometimes it's just about rest - it's okay to rest that's no giving up, remember that. You've shown great resilience with your willpower and fortitude for sure, but sometimes it's draining to use mental resources all the time and some days it's best just not to think too deeply or too much if possible and just allow yourself some time and space - I know for sure that sounds easy to say and not so easy to do mind you!