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sophie72924 sophie72924

Surviving Glandular fever...

I thought I would start a discussion, I have written about my experience in a few other threads but wanted to create my own in the hopes it offers people hope and comfort because in the darkest times it's what I needed.

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 I was so weak. Sent to cancer clinics because I had so many lumps in my neck, which was a scary time. 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... 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 coping minute by minute and I didn't have the energy to think past that, bed 247 with a lot of care and support from my family.

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 I had a MASSIVE break down which was detrimental to my recovery and I finally 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's zig zag, forwards and backwards. 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 and I have relied heavily on pain relief medication.

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 because of the lack of exercise which I hate. 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 loose hope 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. Pacing yourself, REST. And resting before you need to rest. Learning to be mindful. It all helps. I look forward to reading from people who have fully recovered as I still have my ups and downs but determined to make it through.

27 Replies

  • rhonda21886 rhonda21886 sophie72924

    Sophie, your post was God sent! I am in month 8. Making some progress. Can identify with lots of the things you said. Jesus has been with me but I too have and still suffer muscle pain and agony.

    Thank you again for your post!

    God bless and keep you!

    Rhonda

    • rhonda21886 rhonda21886 craig07920

      Hi Craig, I have been struggling but am making some progress. I was told that I probably had colon cancer but Praise God I do not. CT scan suggested it and GI doc said he felt sure it was but colonoscopy was clear!

      I have gained a little weight but my appetite is not great yet. Praying and praising for every bit of progress!

      Your comments are always so encouraging. What a great ministry!

      God bless and keep you! Rhonda

    • craig07920 craig07920 rhonda21886

      Hi Rhonda,

      I'm so sorry to hear that you had to go through that terribly frightening and worrying time, just praise God as you say that it is not anything as serious as that, what a terrible time you've been through. Praying is the best for sure Rhonda, God will answer and is working for your good in these and all circumstances I feel certain!!

      You will definitely get there Rhonda, there is still recovery there for you I really believe that. I still vividly remember how exhausting and draining going through the experience of glandular fever was, mentally, physically and emotionally. Recovery takes time but you will get there in the end even though it often feels forwards and backwards with no set pattern to it. Hang in there and praise God as you say!!

      God bless you too and thanks for the best wishes and kind words!

      Craig

       

  • craig07920 craig07920 sophie72924

    Hi Sophie,

    Just wanted to say thanks to you for sharing this story. I found it very moving and I'm sure others will find it very motivating. I also went through a tough time with glandular fever around 10 years ago, you're right that you just need to listen to your body and it's zig-zag in how recovery goes.

    It definitely sounds like you have had such an awful time, but what marvellous spirit and courage you have shown to keep going and to even start running again! That's a tremendous achievement well done indeed! Remember each day is another day towards recovery and you won't ever have to go back to where you were before I truly believe. Remember not to overdo it though and just take it at the pace you feel is right for you - frustrating I know but eventually you will feel back to full fitness again, I have no doubt!

    Take care and thanks again for sharing

    Craig

    • sophie72924 sophie72924 craig07920

      Thank you craig, that was such a lovely message to read. I really hope so and that the only way is up now. I wish I found this forum a while back it would of been very helpful!

      You are right when you say not to over do it, on bad days my body does tell me when I've done too much as I can get splitting headaches and temps as well as the pain, which I know is a sign of CF but rest does help so that's what keeps me Positive! Although it feels like an incredibly long journey I hope at the end of this year I can look back on this all as a short period in my life I got through! Thanks for your kind words and support.

  • Stokieboy16 Stokieboy16 sophie72924

    Really inspiring Sophie thank you. I am recovering from GF which was at its peak last November. Like you say you need to push through and take control of GF as much as possible, don't let it rule you. Easy said than done but as you and others have positive stories it is possible and it has aided me in my recovery. Still not 100% and have the odd really bad day but as Craig says each time is not as bad as the intitial early days. Hoping to start back with gentle running in April.

    • sophie72924 sophie72924 Stokieboy16

      Hey!

      I'm so glad! And that's such great news you are heading in the right direction too. I literally thought I would never get there and sometimes I still have the bad days but you just have to focus on everything you've done hey! Good luck with the running, like I said, took me a good few weeks not to feel dreadful after each gentle jog - would wreck me for work also and even now if I over do stuff I get a high temp and a banging headache (which used to get me so worried as they are signs of CF) but I think if rest and sleep helps you recover (even by 1%) then your all good. I'm about 10 weeks into jogging now and I've only just been able to feel fine after and be able to do other things so going to try my luck at jogs on work nights! So good to hear we are not alone. Thanks for the reply.

    • craig07920 craig07920 sophie72924

      Hey Stokie / Sophie,

      Just want you to know that for both of you I believe in a great and full recovery still, and to let you know I really empathise with the comments you have made about the fears and the zig-zag nature of the illness.

      Take it easy with running, remember not to overdo it and definitely don't try to do things on consecutive days or anything like that. I also want to do some running again but have some fears because of other injuries I've had so just hopeful I can get there too eventually, just need to wait and see though.

      Take care and hang in there!

      Craig

  • Sarah0350 Sarah0350 sophie72924

    I can relate to all of the above. Everyone seems to have a unique combination of symptoms and progression. The only universal trait, from what I've read on these pages, is that it just plain sucks to go through this. I'm so sorry for those of you who've been battling this virus for close to a year.

    The best part of GF so far has been fitting into my skinny pants... and I sold my treadmill last week. No exercise whatsoever and I'm very slim. Just don't ask me to open a jar of pickles! And, when did they start making toothbrush handles out of lead? 😝

    Four months of mono, four months off work, and counting...

    • craig07920 craig07920 Sarah0350

      Hi Sarah,

      Just wanted to offer some encouragement, and agree that it definitely does suck to go through glandular fever! The first four months really can be awful, I know they were for me, and I remember feeling like at that stage that I was never going to get better and that I would have to adapt to a new, lesser way of life.

      But Sarah there is a turning point and things do get better, it still took a bit of time after that for me don't get me wrong but eventually your body does get this under control and your resilience will return and you will be able to do things without feeling rotten before, during and after them - it will be a marvellous feeling when it comes!

      Just try and remove as much stress as possible, yes wise to stay off work and even when you do go back do it in a phased way, take some good vitamins including a good multi-vitamin and just get plenty of rest - it's hard to live such a boring life I know but it definitely helps in the recovery to do that but also continue to do things such as seeing friends, small things that help de-stress and don't take too much energy out of you - because that all helps too, it's just about being wise and sensible and not overdoing it.

      Hang in there I really believe you WILL make a fully recovery Sarah!

      Take care and thinking of you

      Craig

    • sophie72924 sophie72924 Sarah0350

      Ah! Your so lucky because I put weight on not moving it's been one of my biggest motivations to get moving and back doing.

      Sorry for late reply, I think it shows how back and forth the recovery is because I've had a bad week or two and slowly getting back on track now. It's so dehabilating; you can think you feel stronger and happier and then you'll go three steps backwards.

      I'm currently looking into acupressure and acupuncture as I know it an help with chronic fatigue and although I've been labelled with post viral fatigue the symptoms are very similar. Will report back after I have been.

  • brent 83487 brent 83487 sophie72924

    Thank you for your post. I did The exact same thing. How are you doing now . I have been sick for 11 months. I like you have worked pretty much the whole time. I took a week off when I could. Still suffering though. I hope I don't have CFS

    • craig07920 craig07920 brent 83487

      Hi Brent,

      Just want to offer some words of reassurance around CFS. The doctors are so willing just to write people off who don't recover within 6 months under this banner, in my opinion it's not the case at all - it can take a considerable time longer for some people to recover from glandular fever and even though it's been 11 months, I believe this can be quite normal for some to take this length of time and make a full and complete recovery after that.

      Still believing in your recovery Brent and that there is an end to this horrible time for you, I truly believe that with God's help there is full recovery ahead, starting right now.

      Craig

    • brent 83487 brent 83487 craig07920

      The last month has been brain fog, anxiety and insomnia. I quit taking antidepressants because they make the insomnia worse. How long will these things last? They are really pulling me down. Just want to be able to go to sleep.

    • rhonda21886 rhonda21886 brent 83487

      Hi Brent,

      Everyone is different. I can only tell you that I struggled with insomnia for several months (7 or 8). I am so thankful for a good night's sleep and rest! I still occasionally have a night where it takes quite a while to fall asleep.

      Insomnia gives us extra time it seems for negative thoughts to flood in on us. Try to combat these with repeating even aloud that this too will pass and you will fully recover.

      I know how desperate for sleep we can become. Sleep will once again become normal.

      For me once I became able to sleep and my appetite return I begin to see more and more signs of recovery. These signs of recovery may seem to come and go but they are beginning to stay longer.

      I pray for help and strength for you as you are struggling with this recovery process! Please rest as much as possible.

      Praying for you!

      Rhonda

    • craig07920 craig07920 rhonda21886

      Hi Brent,

      Rhonda's right, it's a different course for everyone it seems, which I know is not very helpful but just want to reassure that your body and sleep pattern and everything will settle down as recovery comes, and recovery definitely will happen. When you feel so low and can't see progress, it's hard to feel anything positive I know that for sure, but even in those moments Brent there is hope and this virus WILL NOT IN ANY WAY defeat you and your body WILL kick it into touch - don't panic that is has taken so long, that can be normal for many - Rhonda's advice is the best of all just trust in God because He will bring healing without any doubt.

      Thinking of you Brent and Rhonda and just hoping for a good and settled day for you day - this horrible virus won't succeed in the long run and full health will return again, and it will be a marvellous day when it comes because you will feel so free again and grateful for having come through it all.

      Take care and hang in there

      Craig

    • brent 83487 brent 83487

      During a divorce. I have had a lot of time to think about what is important in life. I have a good job, but money isn't everything when you are sick. I hope one day I will be better.

    • craig07920 craig07920 brent 83487

      Oh without doubt Brent you can't put a price on your health, we're all guilty of taking good things for granted until it's taken away from us - I know I have been for sure.

      An antidepressant that you take at night and can really help with sleeping is amitrypyline - something I take at the moment. Maybe worth discussing with your doctor, but please do discuss anything like that with doctor rather than take my advice solely as I'm no medical expert.

      Keep holding on, that's the key - it's hard Brent I know - but better and happier and healthier days will be ahead for you, thanks to Jesus' intervention, I truly believe that.

      Craig

    • brent 83487 brent 83487 craig07920

      Thanks. I have actually slept for the past two days. It has helped some. Not near as much joint pain. I still feel like I have lost part of my body. I have lost weight and I still feel frail. Muscle mass is gone. I thought I would keep muscle mass since I was still working, but I guess I finally hit a physical wall. I am trying to stay positive, but sometimes it gets hard. It is like watching the world pass me by and there is nothing I can do about it.

    • sophie72924 sophie72924 brent 83487

      Hey how are you doing? Have you gone to docs to ask for CF assessment? I've had a lot of lows and highs since last posted. Went away for a week on a sort of road trip holiday in Europe and it destroyed me so been recovering from that for weeks and building myself back up again. I have to say though! And to anyone else reading... I have just finished a six week course of accupuncture! And oh my gosh do I feel different. I'm so much more myself and energy and kind of kicked me out of the slump I found myself in it's great. Don't get me wrong I still need to pace myself and take care but wow. I highly highly recommend finding a good acupuncturist and explaining you have post viral fatigue. It was the boost I needed and everyone has noticed a difference. I go away for two days tomorrow and I'm just praying I have a better experience than last time. Deff keep pestering your doctor to be passed on!!! I know exactly how you feel. I've been very down with my appearance too and it's been horrible to see my body change and have no control over it. I've put on weight and it makes me feel even less like myself. But seriously the accupuncture. No More pain in my muscles or twitching etc. Once a week for six weeks!!

    • brent 83487 brent 83487 sophie72924

      My doctor had told me that I was probably borderline cfs, but he thought that I would come out of it. It has felt good to get some sleep. I am having blurred vision though. I know this is a sign of cfs. If I have cfs it is my fault. I always push myself to the limit. Over achiever to the max. I thought I could work through it and I guess I was wrong. My doctor thinks I will be 100 percent in time. I wonder if it will happen. I hide my sickness for months because I didn't want anyone to know. Big mistake. I miss my life. Canoeing, hiking , just being active. I guess time will tell. Thank you for your support. It means a lot.

    • craig07920 craig07920 brent 83487

      HI Brent,

      Just want to let you know also that I still fully believe you will make a total recovery and get back to these things that you enjoy doing. It's awful to miss out on doing the things you enjoy and feeling helpless, it's terrible, just hoping and praying things will get better and I truly believe they will because God is there to help, He hasn't given up on you and won't ever do that!

      Glad to hear things are doing a bit better for you Sophie, thanks for the good advice certainly worth thinking about if that has worked for you. Another thing I would recommend is Bowen Therapy, something which has helped me for many ailments and it's a very gentle,relaxing and non-evasive thing. Definitely worth looking into.

      Hang in there guys, thinking about you and hoping for a good day today.

      Craig

       

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