Mono recovery story collection!!

Ears, nose and throat
1

Hey everyone,

Let's post some positive mono recovery stories so that they're all in one place to give people encouragement. I think there's a negative post bias that understandably happens where most people post when they're concerned, but not when they've recovered. This can give someone viewing the posts a pessimistic impression of recovery. On the other hand reading someone's recovery story, including the darkest parts of the illness, can give hope and aid in the healing process.

I'm still in recovery myself, so I don't have a story yet, but I invite you all to post your recovery story, or other stories you've found / been told.

Thanks!

-Jesse

2

PS - I tried to post stories from other sites on a previous thread but the mods deleted it. Guess we're not allowed to copy / paste or have links

3

Thanks Jessie and a great idea. Any internet search often highlights the bad side of this illness. I started blogging to try and pass on good tips.

4

Nice Stokie! What do I search to find your blog?

5

Good idea Jesse,

Like many on here I was in the same boat struggling for months with glandular fever / mono and unsure if I would ever get better. However I was able to make a full and complete recovery despite a really difficult I would say 9 months in particular.

Please don't be discouraged by reading that because everyone's recovery is different, many recovery much quicker and the first few weeks / months is always by far the worst.

So my message to anyone having a difficult time with mono at the moment would be to remember that it definitely does pass over, sometimes it can take a bit of time, but it does. I was able to get back to full health after that and live a normal and active life again which I'm grateful for.

Take care

Craig

6

Thanks for sharing that Craig, inspirational as always. How long until you were completely back to normal?

7

Hi Jesse,

Thanks for the message and just hoping you are feeling okay and just want to say that was a great idea to set up a page where people can post positive and encouraging stories, it's such a hard virus to deal with and it's important people know there is hope and recovery at the end of the road for everyone reading this who is or has been struggling with mono / glandular fever and just feels weary and tired and scared, which is more than understandable given the circumstances.

It is different for everyone, for me I would say the biggest turning point came around after 9 months, and although it still took a little while after then to feel completely normal I was able to live a much more normal life from then on, so long as I paced myself and still took care. It did still take me a while to get back working full time again, but I think my confidence and things were shaken a bit too in that respect, and it's important to phase things in and not just jump back in to the deep end, I think that definitely helps.

Everyone is different though, some people recover quicker, and often it's a zig-zag kind of recovery, where sometimes you can get mini set backs and wonder if you're back to square one - be assured that you're not if feeling that way today it's just part of the recovery process, and you definitely will get better - there is hope and recovery for everyone with this horrible virus, your body eventually gets on top of it and then it can harm you no more!

Hang in there!

Craig

8

Such a great idea, thank you! I've been looking online for months (I'm just 6 months into recovery) and all I can find is info on how awful people are feeling (which I can understand) when it would be so encouraging to hear about people getting better! smile hope you get better soon!

9

Thanks for this, Craig smile very encouraging.

10

Hey Ste,

Yes the internet is a scary place for stories, this is generally a good forum for encouragement from people going through and who have been through mono / glandular fever. I do believe you are hopefully by the worst 6 months for sure, and that things will get better for you too, so hang in there it's just so frustrating that it can take time, but you definitely will make a full recovery I believe without any doubt smile

Thinking of you and take care

Craig

11

Thank you, Craig! smile

12

You're welcome Ste, thinking about you and believing you will get through this and get better, without any doubt whatsoever.

Craig

13

Hey!

That's a great idea.

I hope my experience can help others to see there is light at the end of the tunnel. It's a massive step for me to say that out loud and offer advise because it's been a long time coming as I am almost 10 months into recovery.

I started to feel very unwell May 2016, back and forth to the doctors but didn't find out it was glandular fever until July. I also believe if I had of rested earlier I would maybe not have suffered so bad but because it took two months for a diagnosis I carried on working and working out, which absolutely ruined me.

I had a horrific summer swollen glands, couldn't eat, couldn't move, in agony... sure you all know. Could barely make it to the toilet. Sent to anger clinics because I had so many lumps in my neck. Literally thought this was it. Flashbacks to the worst of it and me screaming in agony, thinking I couldn't go on and if I ever recovered I would never, ever take movement and life for granted again.

By September I was moving around the house more but I well and truly paid for it, I would be in agony, muscles would spasm and I would barley be able to move. Began to really loose hope that I would get better. As well as being ill, it's like you said... I lost a part of myself to it. I would see my reflection and cry because I would look terminally ill and did not recognise myself. Life was about surviving minute by minute.

By October I was forced back to work because of my living situation. I had no choice and it took everything I had to keep it up. A few weeks in and had a MASSIVE break down which was detrimental to my recovery and admitted to work how I wasn't coping. This took a lot of anxiety away but my mood was beginning to suffer as it had been dragging on for so long I began to get depressed. Somehow I made it to the Christmas break.

After Xmas had another mini melt down because I think you put so much pressure on yourself ' I will be better by then' etc and when your not it just wrecked havoc with my anxiety.

I kept pushing through. I think the worst is it's not a smooth straight recovery. It goes from a good minute out of the day. To a good hour or two. Then to oh today's been manageable. And now I'm at a few days have been okay. But then the next might make you crash and remind you your not there quiet yet.

It's been the hardest nine months of my life. The GF throat and sickness disappears after a few months although I have nerve damage in my neck because of it so on medication for that. It's the fatigue, the pain and agony, just functioning destroys my body let alone get through day to day life.

I kept regularly visiting my doctor which I highly recommend and he referred me to the pain clinic which helps very much so. I have also had a chronic fatigue assessment and they said although they are on the fence they believe this is still post viral fatigue and even though it 10 months on it's a very short term in grand scheme of chronic pain and fatigue.

I remember reading something on a chat room saying someone had GF and CF and what saved them was cardio and I thought are you serious. What sort of advise is that to somebody who can barley make it upstairs or down the street.

I Am a very active person which means this has made me feel even worse about myself being so immobile. Slowly loosing a piece of me to the illness and my body is changing. But. In December. (So 7 months on) I had a thought... I'd like to go for a walk and I wonder if I could jog. Now. To someone suffering with GF to even have that thought is a MASSIVE step forward. So I went. And it was hard. And I collapsed after and everything hurt and twitched and I had to take codene to cope. But then I tried again a week later. And for 4-6 weeks I kept trying and trying. And although it hurt and I suffered terribly after for days... as each week goes by I get 1% stronger and stronger.

It is now march and I am running 3 miles, 3 x a week. I have to listen to my body and be very very mindful. But seriously. I understand now. You have to not let it control you and PUSH through it. Now, you will know if the pain you are feeling is ready for that. Because when I first read someone saying this I was like stfu, how ridiculous. But like I said, I think the first indication you are in a better place is positive thoughts about DOING something.

I am still struggling. I am still in recovery. I still don't feel 100% me and I hate photos been taken because I still don't think I look like me and I still feel like a sick person. It's been very very hard because you have to be mindful and all the services tell you to take every little thing as a positive and focus on how FAR you have come not how FAR you have to go. I find this hard. I think the best advise I could give (but have found it hard to follow myself) was to pace yourself and see every single thing as a positive. Once you start having thought of attempting to do things do it. It took me, as I said, 1-2 months for a gentle jog to not destroy me after. You just have to get to a point where you listen to your body but then ignore it's attempts to stall you too. Because CF is all about our pain receptors been damaged thanks to virus so they are constantly in fight or flight activation mode.

I am still a fair few months off a full recovery and I don't believe it will be until the summer (I hope). Doctors like to say weeks but when you talk to other people it is more like months/year. It's so hard not to be hard on yourself and some days are manageable some you have to stay in bed and not move. I just refuse to let it turn into something bigger!!!

It's not days/ weeks but I'll say each month you get a little bit closer and a little bit closer. I think if I wasn't forced into work I'm not sure where I would be now. If I would of had a quicker recover or if I would of struggled to keep moving because I didn't have too. I think when you take that next step (work or exercise) do know it will make you feel worse. It will be very very hard but just keep pushing through and listen to your body.

I also take lots of vitamins, b12 is advised for GF I also take D3 and omega 3 and iron. All highly advised for GF / CF suffers. Healthy diet is also advised and I swear I read that dairy, wheat and red meat etc can make you worse I don't know. I also have a monthly deep tissue massage which really helps and have been advised acupuncture but have yet to try it.

As you can see, it's been a very long time for me and I'm still struggling. Make sure you have someone you can talk to and a good support network. Chase your doctor into referrals too so you can get the right support there. The biggest thing I clung on to was that the fact there is improvement. Even if it is 1% each month is a POSITIVE. Because if it had turned into chronic fatigue /ME you would see NO improvement after six months. Or decline. So hold on to that and keep going.

14

I think that's where my confidence and mood was knocked; the zig zag/ forwards and backwards of the recovery. You learn not to get your hopes up when you have a manageable day because you could have a horrible one the day after. It's really hard to accept and believe that your making progress hey! I'm currently at the 9 month mark and at the moment I have more good days than bad and feeling stronger and more like myself. Can I ask, how much longer it took until you felt fully recovered?

15

Thanks for this, Sophie! It sounds like you've had to work hard at your recovery. Interesting what you said about the supplements, I also take iron (slight deficiency) and d3 (precaution) and was thinking about taking some omega 3 too! Well done on your positive attitude, I think that's so important. Hopefully it won't be too much longer before you're back to normal, and you've already made so much progress smile

16

Thanks so much, I hope so! Yes I was advised to take omega 3 for joint pain etc so thought it wouldn't hurt! deff worth the try.

17

Inspirational once again Sophie - vitamins and nerbs such as Omega 3 definitely helpful would highly recommend.

Craig

18

Re-reading these forums (due to a recent relapse) I thought I’d finally contribute as I fully support the idea of a page of recovery stories. My experiences with GF below. Not as bad as some, but the more stories the better.

I have always been an active and busy person and am rarely sick. In Jan 2017 I became more unwell than I had been for a number of years but thought it was a bad flu or cold. Initially just very tired with a very bad sore throat. As with other colds/flus I pretty much ignored it and carried on with my day to day life. I work 3- 4 week rotations often in remote locations and returned to one of these rotations still feeling unwell as we had managers visiting our project. Back at work I continued with long days but after work would have to sleep for a few hours before dinner, which was very unusual for me. Over the next few days I would wake up in the night with a heavy fever or chills and had completely soaked my sheets with sweat. Other than getting a malaria test I continued with work but felt shattered.

On returning home I crashed for the next two weeks with improvements in the fever and sore throat but fatigue remained present. The next 2-3 months were very difficult and I felt continually exhausted. I continued to go to work but felt useless. Went to the doctor who took blood tests (no EBV/mono test) which returned normal. I managed to retain a degree of ‘normality’ by attending work but had no motivation to do anything extra and my exercise was minimal. The brain fog, lack of energy and associated low mood were worse than the physical symptoms.

After about 4 months of talking to family and friends as well as the internet I started to link my symptoms to some form of post viral fatigue, possibly glandular fever (which I had previously thought of as a bad sore throat). On returning to the doctor I had more bloods (all normal) except this time I was also tested for the EBV antibodies which were found to be present. Although this only indicates I have had it at some point in my life (I had never been aware of contracting it earlier in my life), it finally felt like some sort of diagnosis which made me feel a lot better.

I tried lots of the suggestions on the internet – rest, exercise, Echinacea, vit C and nothing made an overnight improvement. From about 5 months I started to feel progressively better – but this was definitely CYCLICAL. I would feel pretty good for a week and let myself get carried away with rushing back to all the things I’d missed, then the following week I would feel low again. The low weeks would comprise of low mood, low energy, subtle sore throat and low grade fever plus frustrating brain fog. This cycle continued until around September (month 9), with longer periods of good health and shorter periods of bad. Also, each bad health cycle wasn’t as bad as the previous and each good was slightly better. What I did notice during this period was that low points were often after busy periods. If there were very busy weeks with late nights and too much alcohol, I would often suffer the next week or two.

From September to late November I felt pretty good – 90% myself again – and thought it had gone. The first two weeks of December and its come back with the same feeling. A feeling I find very hard to describe to others – ‘just not right’ is the best I can offer. I’m confident it will pass and I hope it continues to become less frequent.

My feeling is that there is certainly both a physiological aspect AND a psychological aspect. I was definitely really ill but the low mood creates a negative spiral which is difficult to kick. I remember being in tears to my wife that I would never recover – completely out of character for me. When you start seeing some recovery remember those points for when you’re next low and know that you will feel better in the future. Gradually increasing exercise also helped.

My biggest learning is probably in relation to how I judge others. If someone had previously told me that they were off work for 6 months with GF I wouldn’t have believed them. Definitely learned to be more understanding of issues and illnesses I haven’t experienced or don’t understand.

19

Hi JP,

Thanks for sharing your story, I know it really helps others when folks share their stories on here. I do sympathise having went through a similar experience as yours about 10 years ago. It was awful and draining physically and emotionally and mentally.

But I do want to reassure that that this dip you are going through at the moment is just that - a dip and you will get back on track again, the intensity and severity of these dips does definitely lessen as time goes on and you will never have to go through anything like what you've been through this year again with it - year 2 was a breeze compared to year 1 for me!! I felt so much better and virtually back to myself again, with a few wee dips but it was nothing compared to the first year.

Hang in there and remember things will get better!! Fully!!

Craig

20

Hey JP,

Thank you for sharing your story. Couple of questions, if you don't mind please:

1) have you had tinnitus with mono? If yes, do you still have it?

2) did alcohol give you immediate horrible headache at the beginning of mono?

3) how much do you sleep now ?

4) do you drink coffee?

5) did your wife catch mono as well?