Mono (glandular fever), guilt, and desperation

Hey Sarah, I'm in the exact same situation as you, and many more people on this forum have been too. I've had GF for 6 weeks now and I feel like there's no sight of mine going yet either. Some friends have even told me to go for mre blood tests because they said theirs didn't last this long, but my doctor has told me it can last a few months sometimes. 

I don't really have any advice, but I'm like you worrying about work, and worrying that there's something else wrong. I've been reassured on this forum that what we're experiencing from gf is normal though and it can take a while. I can barely get out of bed and get down the stairs most days.

I hope you feel better soon, I just wanted you to know you're not alone

Hi Sarah,

You are not alone and not crazy!! I had mono the summer of 2015 and was off work for 3 months. It is a terrifying and debilitating illness. It made such an impact on me that I still stay on this forum to encourage other people that go through it. I thought I was going crazy...terrible anxiety, couldn't sleep even though I was exhausted, body aches, terrible sweating, fever surges, spaced out, just not well in any way. The best thing to do is rest, take vitamins, and know that you will get well. Even after I was well, it took time to build myself back up. It's really important not to push yourself because then it will take even longer to get well. My doctor thought I should be well in 6 weeks, but it took much longer. She was afraid it was turning into chronic fatigue. I didn't buy into that, it just took me a long time to get well. So try not to listen to other people...sometimes even doctors don't understand. I didn't discuss it with any of my friends. i just sort of disappeared for a few months. it was too much to explain to anyone and I was just too tired to deal with gobs of questions. So hang in there. I hope this helps you at least a tiny bit. Mono is something you will never forget! There are lots of good people on this forum that encouraged me. If you want to know what vitamins, herbs, etc I took just let me know.

Hi Sarah,

I was diagnosed with GF in June 2016 but felt symptoms in May. I'm still recovering from it now and that may be disheartening to hear but literally everyone is different! I had all of these symptoms I couldn't last too long in a conversation as I would get too tired. It's good the fever is going and slowly all your symptoms will subside but I too had a really really bad run for around 6 weeks! I tried to fight it for a good month, as I had exams to finish and rehearsals to go to (as I'm a dancer so recognise how hard this is for you!!) but the best best best thing to do is rest and have a positive attitude even though I really didn't as still struggle daily. But I am getting there and so will you.

I hope that helped in some way,

Georgie x

Hi Sarah,

I just wanted to write to offer you some words of reassurance, that most definitely the things you are going through here is very typical of mono. I had mono 10 years ago when I was in my mid to late 20's, and I can tell you those first 10 weeks were awful. I want you to know that the tiredness, the sweats, the horrible feelings of fever going through you, the emotional worries, these are all common place and those who say you should get better within a few weeks or just 'battle on' just don't understand what it is really like - it floors you for six and you have no choice but to rest and lay low when feeling the way it makes you feel.

But the good news Sarah is that all these things do go away, definitely this is the worst phase you are going through right now and it can take time to recover, it is different for everyone I know and it's hard to be patient, for me it took quite a few months and I thought I was never going to recover my body felt so bad but I did and eventually your body gets to a stage that it can cope with things again and you are gradually able to pick up with an active and happy life again.

Best advice from my experience is the boring stuff really that you must respect the virus and take plenty of rest, you are doing the right thing, my view is that working through it is the worst thing and sets you back, plus I know that I wasn't able to work through it, I had to be off for around 6 months or so and have a phased return after that. Take some good vitamins, a good strong multi-vitamin is good (Immunace in the UK is a good one), and immune boosting herbs like siberian ginseng and echinicea are are good and energy giving supplements like B complex and Co-Enzyme Q10 are very helpful indeed.

Just want to offer encouragement Sarah that you will get over this and will get better, I was in the same boat and it was the most horrible and frightening experience, but it does pass, it's just so frustrating that it takes time for most. Don't listen to those who say you should just get up and get on with it or that it is not normal to be feeling like this so long - it IS normal with this virus (despite the frustrations of reading everywhere on the web that you should recover in 4-6 weeks or 6-8 weeks - it really isn't the case for most people in my experience).

Hang in there - I believe in a great recovery for you in time Sarah, so sorry to hear you have been feeling so bad with it and let you know I'm thinking about you. Message any time you're not feeling great.

Take care and remember you will get better!

Craig

Shabbychic, Im not getting down the stairs much, either. I've even texted my housemate to feed my pet! Glad to hear I'm not alone in this. I hope we both get stronger soon.

Forgetmenot, I'm glad to hear I'm not the only one off work for months - not that I'm happy you were so sick, of course. The first doctor I saw, at an urgent care clinic, said it would be 5 to 6 weeks. Why do they set us up for such frustration and disappointment?

I get the conversation thing, Georgie. Yesterday, a manager asked me to call around to find a replacement for a meeting I will miss next week. I waited 15 minutes then responded that I just can't do that. This is a manager who has done a lot for me and I couldn't even make a couple of phone calls for him. More guilt and embarrassment. I can't imagine how you could've fought this for a month. I barely REMEMBER the first month. 😝

Everything on the internet says two weeks off work and back to normal within eight weeks. I want to find these people propagating this misinformation and fall asleep on them so they can feel the full weight of my useless body! (Kidding, of course!)

Craig, I've read a lot of the things you've written to others over the past few days. You're a really sweet person to offer encouragement to so many people so long after you've recovered. It must have been very hard to cope with being off for six months. I sure hope I'm back on my feet before that because I'm missing so much (work, family, social, etc.). Thanks for taking the time to write to me and so many others. It really does help relieve the stress.

I'm really glad I found this online community. You guys make me feel less like a whiner and more like a legitimately sick person. I've been feeling like I've done something wrong to not recover in five or six weeks, as the first doc predicted. Thank you all for responding.

They should really make separate guidelines for people who get mono as an adult so that those of us who take longer to recover don't look like malingerers.

Sarah, listen to your body. Only you know how you feel. Ignore well meaning people who don't understand. I'm in month 6. Have had 2 relapses.

Lost weight. Poor appetite still. Beginning to improve. The virus attacks most of our systems. Each person Will be different. Anxiety, fear, worry, and feeling depressed are battles most of us fight with this virus.

Looking to God for mercy and grace to get me through this terrible time.

You too will get through it. Good family support is important. This relapse has been 5 weeks long. I've just started chiropractic treatments. Could barely sit up long enough to go for xrays and treatments but they seem to be helping.

Keep in mind this will pass.

Rhonda

Sarah, forgot to mention I also suffered from severe muscle pain and weakness. Even as I am gaining a little strength I still need a family member to wash and dry my hair.

I am still in bed the biggest part of the day. Oh yeah, insomnia too. It is getting better.

Please don't feel guilty. This is a mean virus.

You will get better.

Please keep us updated.

Rhonda

Geez. Six months and you still need help with washing? The thought of this lasting that long thoroughly terrifies me. How do you not go insane? My whole body hurts so much today and I'm a weepy basket case.

My boyfriend has been helping me wash. I have no family and his is far away. I HATE depending on him and being able to give nothing back for so long. He lives across town and works full-time, but keeps coming over to look after me and my pet. Ten weeks and counting.

Sarah, I've found the broad spectrum CBD oil you can buy over the counter helps with pain. You just put drops under your tongue then swallow it. It is also anti-inflammatory. Also the gel bags you can freeze or heat helps.

Rhonda

Sarah, thinking of you today. Keep in mind there will be better days ahead. Sometimes you feel it's one step forward then two steps back. But eventually you will make progress that will give you some hope, courage and strength.

Jesus has held me in his arms. My husband would say he could not see how I could even walk all I was going through.

How is your appetite? Are you able to hold food and water down?

Take care. Keep hope.

Rhonda

I'm not eating or drinking much, but enough. Doesn't take much food to fuel this lifestyle.

The past five days have been exceptionally bad and I'm desperate for things to change for the better.