What is going on?

Ears, nose and throat
1

Hi everyone I really want some advice. I'm 19 years old and was diagnosed with glandular fever on the 24th of December LAST YEAR!

I did get back to work doing a few hours a day, but nowhere near as much as I used to. I've had many different symptoms that have come and gone. But here are just some that haven't seemed to go.

I've had awful fatigue. To the point where I can hardly get up to go for a wee... Let alone get to work or see friends/family.

I've had really bad muscle aches which I try to ignore but some days they're crippling. Mainly in my back, but also my neck, arms and legs. Basically everywhere.

I've felt incredibly weak some days, so much so that I can hardly raise a glass of water to my mouth to drink.

I've had a low white blood cell count for months and have seen a haematologist who says this isn't dangerous,however I don't feel it is good either. I also have a low vitamin D level which I take supplements for.

I feel paranoid, like everybody is watching me. If I manage to get to tesco to buy food I feel awful as I'm not at work. I feel like I'm constantly being judged by people around me, which consequently has caused me to push family and friends away from me as I don't feel I can trust anyone.

I've been getting stressed out by the slightest things despite being normally quite relaxed about life. Stress also causes me to get cystitis (a urine infection) which causes pain, discomfort and can make me feel angry and confused.

My brain feels empty and messy, I can't keep conversations going easily as I forget what I was talking about.

I have been anxious about things. This has got so bad that I can't watch films or programmes as most of them make me feel so anxious that I feel like my "fight or flight" response kicks in and I just want/need to get away from it. I feel like a grandma, constantly seeing the worst case scenario to everything. If something isn't done correctly then it makes me feel so anxious, but I don't have the energy to correct everyone's mistakes.

I know it's probably because of the glandular fever,but I hate the person I am at the moment, so much so that I'm constantly analysing myself and the things I do and say. I just want to be a normal 19 year old girl and enjoy life, however all of these things are stopping me. Is there anyone I can talk to that can help my mind to settle as it's really getting me down. My doctors don't seem to be able to offer me anything other than yet another blood test. When I've had so many over the last 10/11 months that I'm surprised I have any blood left to give.

Any help or your own stories would be so incredibly appreciated,

Thank you,

Eden

2

Hi Eden,

I am so sorry to hear you've been having such a hard time with glandular fever, it's very important for you to know that there is a light at the end of the tunnel and the first year is an awful experience but things most definitely do get much better after that.

When I had the virus, a little older than you at around 25 or so, I thought I would never get better either. It was a dreadful feeling and the physical and mental feelings it brings on would be enough to send anyone close to the edge.

First thing is that what you're going through is the same as others on the site here and it's not abnormal for this to go on for so long and still make a complete and full recovery, which I really truly believe you will. Don't read the scare stories about Chronic Fatigue or anything, it's normal for your body to take a good year to get on the road to recovery with this. I used to worry that I wasn't getting better in the 6 to 8 weeks it told me that you would, but I have learned since that most websites and doctors don't seem to take account for the severity of the effects of the virus and the longevity it can take.

You will make a full recovery, you are young Eden and will most definitely get back to being a healthy young man and you will be fit and well to enjoy your youth again! Your body has marvellous powers of recovery and the energy that is gone now will return, your body does get resilient again even though whilst going through it, it doesn't feel that way.

In the meantime, it's hard I know but try and remove as much stress as you can, there is a clear link between stress and the illness, life balance is the key, listen to your body and rest but also still try to see friends and do things you enjoy without overdoing it. Taking a good multi vitamin can help, and also a therapy called Bowen therapy is something that has worked for me, have a look into it very harmless and good for the immune system.

Thinking of you and just a reminder that you will get through this and will get better - and I mean fully better!! Message any time as I like to keep an eye on the forum and see how everyone is doing.

Craig

 

3

Thank you so much, my only issue is that I never will be a healthy young man, purely because I'm female,hehe! But I do feel that hopefully I will get to be a healthy young woman again 😊

Thank you ever so much for your message, it has been a horrible,horrible time. I wish I could make it so that nobody else has to ever go through it. More research needs to be done into it, as my doctors know very little solid facts about the Illness and I don't think they are alone in that. It's such a strange virus.

Hopefully one day our grandchildren will know about it as an illness nobody gets anymore.

Thanks again and take care

Eden

4

Hi Eden,

Oh I'm very sorry for changing your sex in the space of my message lol! You will most definitely be a healthy young lady soon again, try not to worry I know that's much easier said than done when going through such a hard time though.

It most definitely is a horrible time when you go through this Eden, but there is hope and there is recovery, so hold on to those things - it doesn't last forever and eventually your body defeats it for good.

Thinking of you and sorry again for my mistake I don't know what made me assume! Silly me!

Craig

P.S. You WILL get better without any doubt in my mind, I was in the same boat as you with the same awful draining feelings and experience and fears, but they do go away....hard to be patient I know but time will most definitely heal

5

Thanks again Craig, I will get there, even if it damn well kills me in the process. I'll getthrough this,thank you.

6

Hi Eden,

First of all, you're not alone- glandular fever can be a dehabilitating illness that can leave you feeling very unwell for a long time. I have been signed off work for another month after my initial infection 18 months ago and so it is definitely true that it can last a while and come back months later. Like you, it has affected my white blood cell count and so I feel constantly worn down and fatigued. It has also made my blood sugar increase- another reason I'm so tired. I also lose concentration easily- not good when I'm a teacher lol!

However, what you are saying about social anxiety must be really difficult. I have done quite a lot of reading and this is a genuine symptom of glandular fever. I can understand how this can develop because you aren't going out so much and get so tired when you're with people - I definitely find that. I think you get so used to tiredness that you kind of choose to be on your own and I believe this creates low mood and fear of being around people. I'm not sure this is actually what your body and mind truly needs though. I actually think you need to slowly reintroduce activity into your life to get yourself used to things again. I believe you can do something about this. Try to invite friends for coffee instead of going out and possibly organise a 'walking buddy?' I know this sounds strange but if you try and get 15 minutes of fresh air and exercise a day, and you're doing this with a friend, it might help to ease your mind. It will also physically tire you out so that sleep becomes more beneficial. This is what I have tried and it has invigorated me and made me feel less weak. I would also try and take vitamin b every day- it helps boost energy and I find makes a difference to my state of mind.

Aswell as this, sleep when you need to. Possibly try to have an afternoon nap if you feel you need it?

The biggest thing I would say though is to talk. Share your experiences with your friends. They won't understand if you don't explain it to them.

I can honestly say this is the most difficult illness I have had but I also believe it is a stern reminder from your body that you're doing too much and need a break. It's like your body's way of saying ' I ne e to stop.' It is frustrating but I do think there are ways of managing it so that it doesn't affect your life forever- you will get better!

Like I say, I've had it on and off for 18 months, and whilst this has been frustrating, it hasn't been doom and gloom the whole time. I have had periods of time where I felt nearly normal. It just flares up when I'm doing too much. Maybe try to see it like this? More like your body's way of telling you to slow down?

I hope that was helpful X

7

Yes, very helpful, thank you. I just feel like I can't do much more than what I am doing, but I can't do anything less either as all I do is lay in bed and sleeo abd eat food. I've also lost a stone since I got ill, so my body is obviously fighting hard. So I think I'll just leave it to continue fighting. Just need to listen to my body as much as I possibly can.

Thanks again,

Eden

8

Most definitely thinking of you both Eden and Rosanna. It's so hard to deal with, and I do empathise and understand from having been through it myself. But also just want to reassure you that there is hope and there is recovery, hold onto that for sure - it won't be this way always and you will get back to full health again once your body gets this horrible virus under control.

Hang in there and you're not on your own with this.

Craig

9

Hi Eden,

Just wanted to see how you were feeling this week, and let you know I thinking about you and still really believe you will get over this terrible time with glandular fever that you have been going through. Just so sorry to hear it's been such an awful year for you, but let me reassure you that dealing with the second year after this virus is like a walk in the park compared to year 1. You might not still feel totally perfect but you will feel much much better I really believe that.

Hang in there and a full and active lifestyle is on its way back to you, frustrating I know it's not coming immediately but it will come have faith! There is hope today!

Craig

 

10

Hi Craig,

Thanks for your concern. I have been really out of breath and dizzy this past week, but hopefully it seems to be getting better soon. I am sure I'll be fighting fit in no time at all again

Hope you are well too, how long ago did you have the side effects/symptoms of glandular fever?

Many thanks,

Eden

11

Hey Eden,

Hoping that you are feeling a bit better, breathlessness and dizziness can be horrible so just take it easy and rest up and look after yourself as much as you can. The whole experience of going through glandular fever is a traumatic one and your body can react in all sorts of ways. But the key thing to focus on is that you will get better soon and there is plenty of hope, without any doubt.

Similar to you, I had a very traumatic time the first year of glandular fever but things started to get better after that. It wasn't an overnight switch or anything but at the same time you can take big steps forward in a short space of time just when you are least expecting it. Year 2 was much much better and was able to function near to normal and get back to enjoying life again...and the same will be the case for you too I believe.

Craig

12

Thanks Craig,

Sounds like you had a horrible time too, glad you are much better now. That's the aim of the game I guess 😊

13

Hang in there Eden, things will get better, without any doubt in my mind I believe you will recover fully and completely to live a full and active lifestyle again. Craig