Relapse, 10/11 months in

Posted , 10 users are following.

While I've had some periods of moderate wellness, going out with friends, working full time in a physical job, I've crashed terribly and I'm so so depressed. Last time I was like this, I worked a 53 hour week, then on my 1 day off went to a concert in another city. I started to feel really ill and ended up off work for a month. That was around 2.5 months ago.

This time I didn't go too crazy at work, did about 35 hours the last week, however I felt quite wired and wasn't sleeping much due to thinking about a new job opportunity on top of a relationship issue. I was walking around town and felt that I was getting shooting pain in my shoulder, as well as a strange vibrating sensation in my chest, I put it down to too much caffeine. A few days ago as I tried to go to sleep I had the chills and had to wear a dressing gown to bed, then as I was trying to sleep I kept getting those weird jerks that wake you up. I ended up sleeping about 3 hours This is exactly what started after the concert a few months ago. When I woke up I had awful nerve pain and cramps all over my body, pins and needles, a bit of a tremor, I have brain fog and feel lightheaded, I feel sick and lights look too bright, I also feel pretty fatigued as the sleep I'm getting doesn't feel very restful. I'm terrified I'm going to be off work for an extended period again, and that this will be my life from now on, working a couple of months, and being off for a month. I've now been off work for 4 days and have no signs of improvement. 

I'm such a hard worker by nature and this just kills me, I feel so depressed. I'm worried that I've developed CFS and my body is stuck with the effects of this virus forever. 

0 likes, 39 replies

Report / Delete

39 Replies

  • Posted

    Hey ballerina!!

    i do ballet, well, I did until glandular fever stopped me. That was 2 years ago now.

    i am so sorry you feel like this, I know from experience that you can't push your way through this virus, it just pushes back twice as hard. I am too a hard worker and someone who just can't sit still, I just like to be busy, but I have had to learn to slow down and take things easy, year one was dreadful, this year, year 2 has been a whole lot better for me, I would say I'm 99% back, I just haven't gone back to my ballet classes yet or I don't do any classes or rigorous excercise as I still get times when I feel a bit fatigued, but it's going slowly.

    all what you are going through seems pretty typical to me. If you can get help and take more time off work to recover then I'd say do it, give yourself the chance to recover. There is hope and you will get better. 

    Im finally starting back to college next week(lost my job, now changing career) so things are getting there.it will for you too.

    caroline xx

     

    Report / Delete Reply
    • Posted

      That's good to hear :D It's hard explaining to people that I'm ill with glandular fever, I don't even believe it myself as everything you read online seems to say you should be well after 6 weeks. rolleyes Everyone says to me, it's been nearly a year how can you still be ill?? And everything online says if it's longer than 6 months basically it's CFS which is incureable. I don't really have any hope at the moment sad 

      Strange thing is, I have been well-ish inbetween these relapses, so guess I've got to focus on reducing stress and remaining in these well periods. 

      Report / Delete Reply
    • Posted

      Hi, I get and feel everything you're saying.

      i think sometimes people look at me and not quite understand. I can get quite annoyed with it too, why do I get stupid relapses, I can't rely on my own body, it lets me down, I just don't have that resilience yet, not like I did. I saw an endocrinologist at the one year mark and he said to me another 6-12 months and I would be fully better!!! So I still have about 3 months before I hit that. He was positive so I keep that thought in my head.... These things take time. I'm just going with it and definitely don't worry about cfs. We haven't got that.😊😊

      caroline xx

      Report / Delete Reply
    • Posted

      Yah well I hear that too. How can you be sick for so long. I will tell you I built a very successful company with over 50 employees. I used to work endless amounts of hours and never get tired. I could bid jobs all night and work on the job site the next day without sleeping. I did that kind of stuff for years. I finally got the business running on its own with plans to vacation and finally do fun things that I had missed out on because I worked night and day to build a business. 

      Then horr set in, the most horrible thing I have ever experienced Epstein-Barr Virus.  I’m on month 8 now just coming out of a relapse for 6 weeks. So I can completely relate to what you said. I will beat this and return to a normal life I guarantee you that. What I have learned the hard way so far is just don’t push it and rest all you can and don’t put yourself in stressful situations. 

      Report / Delete Reply
    • Posted

      I'm approaching my year mark with Mono next week. I am definitely feeling a "pressure" that I should be better by now. I also feel somewhat embarrassed and/or ashamed to tell people that I am still sick. While I am much better than I was in the beginning or during my 2 relapses, I still have quite a ways to go. Other than not even considering attempting to exercise yet, yesterday was the most "normal" day I've had in months. Surely, this whole journey will be over soon!

      I've also had fears of CFS, but I really don't think that's what we're going through. I hope you start feeling better soon. Whenever my sleeping isn't going well, I find that everything in the world seems worse. Sometimes I can reassure myself that everything will be all right if I just remind myself, "Ah, yes, I haven't had good rest lately. Everything will be "off" for awhile. I'll reassess this issue in life once I get sleep." Of course, that can be easier said than done!

      Hang in there and best wishes for your recovery!

      Report / Delete Reply
    • Posted

      HI Kris,

      So sorry to hear you've been through such a terrible year with this virus. I do understand that feeling of pressure that you feel like things should have gotten better by now. I feel like that in my own situation with back pain and being off work too. It's an awful feeling Kris, but remember this isn't your fault, this is a horrible and debilitating virus and you have absolutely nothing to be ashamed about. I do understand those feelings Kris, have been feeling a bit shamed myself lately because of my circumstances and not working and feeling like not doing enough to help myself, it's easy to tell someone they shouldn't feel that way but sometimes I know these feelings can be overwhelming and so difficult to cope with. Sometimes I feel like a hyprocrit because I like to come on the site here and try and encourage others even though my own situation is a mess!

      Hang in there Kris, I'm thinking about you and remember just cope with one day at a time, try not to put a timescale on recovery, and God willing you won't have to go through anything like this last year ever again. Praying for God's help for us all on the site here!

      Craig

      Report / Delete Reply
    • Posted

      Hi Kris I see youv had 2 relapses in the year you've had this,may I ask how you were during your relapses  and how long it took you to feel something like again after your relapse? im on my 4th relapse in the 14 months since ive had it and im so exhausted I can barely function xx

      Report / Delete Reply
    • Posted

      Oh no, four relapses, that's awful! Both of my relapses were similar to the onset of my mono. I was feeling okay one day and woke up the next miserable: achy, flu-like, fatigued, not wanting to move. I stayed in bed a few days and then moved from the bed to the chair and didn't do much else. Both relapses and the onset have been similar. I start off miserable and then just very slowly start to feel better (with ups and downs). Each time, it has taken about 3 months for me to return to a feeling of being able to function for a few hours a day. Before the 2nd relapse, I didn't know relapsing was possible. I'd had Mono for 4 months and started feeling better and thought, "Okay, I'm healthy. This is over," and I jumped back into life. After the 2nd relapse, I pushed too much once I started feeling better and I relapsed again. Now, I am starting to come out of this relapse (after a slow 3 1/2 months recovery) and I'm struggling with wanting to do things and try to "catch up" on life. Yesterday I was active doing light housework (which eventually broke me out in a sweat so I stopped) for about 3 hours in the morning. I slept in the afternoon and then I had "jelly" legs and was just horribly fatigued all evening.I know I have been doing too much the last couple of weeks, but it is so mentally invigorating to be more active. I get so dang tired of laying in bed! I'm sure you feel the same. I thank you for asking this question because in writing about this, I've realized how I need to slow down.

      Each relapse has been less severe, so that is positive. I think I wrote more than you were expecting and I hope I answered your question somewhere in there. (The last couple of weeks I have really been struggling with brain fog.)

      How long do your relapses last and what are they like?

      Report / Delete Reply
    • Posted

      Hi Kris thanks for replying,my relapses are putting me in bed each time for a good six weeks,no sooner have I slowly built myself up again and feeling a bit more normal but not doing what I did before I got it,i fall ill again and the cycle starts all over again,its been a nightmare,im on the 6th week of this relapse and still very exhausted,im taking it very easy this time and listening to my body,i already have M.E./CFS so cant do a great deal anyway but I cant wait to get rid of this virus altogether and get back to plain old CFS,this is just so brutal,dont know how anybody can work with it,my relapses feel like ive started all over again with it,flu symptoms sweats exhaustion dizzy aching etc etc ,I hope you start to feel better soon,thank goodness for this group
      Report / Delete Reply
    • Posted

      Hi Kris / Diane,

      Thanks so much for the kind words Kris, I'm very grateful for them. 

      These relapses you and Diane have been going through must be so awful. I just really hope and pray things can settle down and for a breakthrough. I know you have both been suffering and I know words can't describe how lonely and frightening and dark and discouraging the tough days and moments are - just want you to know I'm thinking about you and still believing there is hope and God has good plans ahead for your future still and that things won't always be the way they have been this last while. I see such wisdom and strength in your words and how everyone is doing the best they can just to hang on - and remember it's not always going to be this difficult, I believe a time will come where God says enough is enough of this thing for you Diane and Kris and will restore your health and confidence and happiness again - hang in there for now though.

      Craig

      Report / Delete Reply
  • Posted

    I am 50 years old and came down with mono last November but wasn't diagnosed until January. November through January were rough but after January I was slowly getting better until I crashed at the end of July. I have been battling this relapse for 6 weeks now. Same symptoms. Dizziness, Tired eyes, Fatigue, Anxiety and Nausea in the mornings. There seems to be a pattern with people relapsing between 8-10 months in. Fortunately my work has been understanding and allowed me to work at home most of the time. I just keep praying and reading my bible know that this is part of God's plan for me. If you trust him in the good times you should trust him when things aren't going your way. We will all get out of this spot eventually. It's going to take time weather we like it or not. 

    Report / Delete Reply
  • Posted

    HI Ballerina,

    Oh goodness what an awful time you'd had of it, thanks for sharing your experience and I really do empathise having went through this horrible virus many years ago. 

    How long into the virus are you, is it 2.5 months or has it been longer? I really do want to reassure you that things do get better with this, it can be very normal after 2-3 months still to be feeling in the intense symptoms phase of this, it is the most horrible experience I know but it DOES get better - I know it doesn't help much when having to cope with each day feeling that way. Even if it takes a little time still, you WILL get there and make a FULL recovery, I truly believe that you will recover and CFS is not going to be an issue - it is very normal for people to go through such intense and horrible symptoms for months and then make a full recovery - hang in there there is hope and this thing does go away with time.

    Definitely agreeing with Caroline that it's so hard to work and push through this virus. Remember that by taking a step back and allowing your body time to recover isn't giving up or doesn't mean to say that you're not a hard worker - it's not like a normal virus that you can push through, the more you push through the more exhausting it gets - it's so hard when you just want to be well and working I know, but please do put your health first and be kind to yourself at this time and get plenty of rest and reduce stress as much as possible. 

    Taking vitamins and herbs really helped me, a good strong multi-vitamin per day, immune boosting herbs like siberian ginseng, oregano and echinicea, higher doses of Vitamin C (1000mg-3000mg per day) and B100 complex and/or Co-enzyme Q10 (great for energy levels and nervous system). 

    Thinking about you ballerina, the depression and mental angst that ensues with this are awful - but please please do know that this virus tries to make you feel that way, it tries to make you think and feel like you won't recover because of its intensity and longevity - but ABSOLUTELY IT'S NOT THE CASE - you WILL recover and WILL be back to full health and activity again, with time - and remember God is the great healer and I believe He is going to get you through this. Hang in there and thinking about you, and just cope with each day as it comes as getting through every day is an achievement with this for sure.

    Craig

     

    Report / Delete Reply
    • Posted

      You give such sound advice and hope Craig just when people nee it the most,thank you again,so glad of this group to turn to when things get too much,only those who have gone through it really get it,just to let you know Craig about my family member,he is in hospital and going to be there for a while,so I can now relax a bit knowing he is safe,perhaps I might be able to get out of this bad relapse now as all that stress from that was horrendous,hope your doing ok Craig xx
      Report / Delete Reply
    • Posted

      Hi Craig, I'm 11 months in, my last relapse before this one was 2.5 months ago. Unfortunately I've just got back from the doctors, explained my symptoms, I'd never seen this doctor before however she's from the same medical practice. She basically said "So you've been suffering glandular fever for more than 6 months, you've got ME" handed me a information sheet on ME/CFS and pushed me out of the door. I'm devastated sad My whole personality is that of an energetic hardworking girl and I feel like I'm just a shell of myself, really really struggling with this

      Report / Delete Reply
    • Posted

      I really wouldn’t put too much weight on that baloney diagnosis. It’s a diagnosis that cannot be proven, it is just the thing they tell you when everything appears normal. I really truly believe that it’s a virus that is just nasty and takes a long time to get under control. Viruses can be brutal! Think about stuff like Ebola or HIV... just a virus? No! Those are the most extreme dangerous ones, of course, but viruses aren’t all just a “you’re sick for two weeks max then you’re all 100% better”. Whatever virus you have, whether it’s EBV or something maybe that isn’t identified yet but presents like mono, it WILL go away. This isn’t just a random fluke of events. I was told I have post viral fatigue possible CFS, but I’m better today. 85% to 90% normal. Because my body is sloooooowly fighting this bug! 10 months in! AND if I had CFS, how come two family members got sick after me with similar symptoms for months? CFS is doctor baloney. You will recover. 
      Report / Delete Reply
    • Posted

      HI Diane,

      Oh I really appreciate your kind words Diane, your advice and words of wisdom have been tremendous. I know for sure it might be easy to give advice but so much harder to take it on board. I wish I was better at applying it myself at times! I'm still thinking about you Diane and just hoping and praying this bad relapse can start to settle and you can see improvement and recovery over the coming period. 

      I hope your brother is getting the help he needs now, the stress of that situation certainly is likely to be a contributing factor and hoping that you can now take some time to focus on yourself and looking after yourself - I don't mean that to sound selfish in any way, it's just you've had it so tough lately Diane that it's really important that you be kind and caring and compassionate and understanding to yourself, and allow yourself the time and space for recovery. 

      Thanks as always for the kind words and still fully believing you are going to get through this, still trusting God with that - He is fighting for you Diane and won't give up until the victory is yours.

      Craig

      Report / Delete Reply
    • Posted

      Hi Ballerina,

      Oh so sorry to hear you've had this awful experience when you seen the doctor. I totally agree with what Van says, I absolutely believe and have seen with my own eyes that many doctors don't seem to know what they're talking about when they come out with this kind of thing. After 6 months they tried to tell me something similar and it was frightening and devastating, but thanks to God I was able to recover and get through it. 

      A key thing I think is missed and Van has hit the nail on the head, is there is a significant difference between post viral syndrome / effects and CFS / ME. Mono is a nasty nasty virus and often leaves people with post viral for a long time, but that doesn't mean to say it doesn't go away or get better - post viral DOES get completely better, it just means your body needs that extended period of time to cope and recover from such a nasty thing. The vast vast majority of people that go through mono, in my opinion from what I've read and my own experience and reading the stories of lots of people on this forum, experience Post Viral and not ME - but their doctor tries to tell them ME because they don't have a full understanding and are just going by a text book which tells them 'oh if it's not better after 6 or 12 months, just write them off as that'. The reality is post viral can last that long and longer for some unfortunate people, but it DOES MOST DEFINITELY get better. 

      My experience Ballerina was the the first year was truly awful, a terrible thing to go through and it took so much of my confidence away and just wondered if things would ever get better. But Year 2 was so much more liberating, a year of recovery. God willing you won't have to go through anything like this first year again, there most definitely IS hope and I for one truly believe that you are going to make a FULL recovery still and most definitely challenge those things the doctor is trying to tell you - for him just to hand you a sheet and palm you off like that is a total disgrace - it frustrates me so much that doctors show such a lack of compassionate, time and duty of care for people who are in a vulnerable and fragile place with their health.

      Anyway that's my rant over! But remember you ARE going to get better! It can be very normal with this virus for it to go on this length of time and get fully better. It happened for me thanks to God and many others on the forum I've read were still in a bad way after a year but saw a breakthrough coming into the second year - hoping and praying for that for you and thinking about you!! And of course do rest and be kind to yourself and take vitamins / herbs - trusting that God is going to get you through this - He knows more than all the doctors and is the great physician!

      Craig

      Report / Delete Reply
    • Posted

      Thank you kindly Craig,i am so exhausted,i managed to get up today get breakfast let dogs in garden and then back to bed,im wiped out,but listening to my body and if this is how it has to be for now then so be it until my body gets stronger.....
      Report / Delete Reply
    • Posted

      Hey Diane,

      You're still in my thoughts and prayers, you know getting up and doing those tasks that you did is a big achievement when feeling that way. It might not feel like it but it is really Diane, when you're feeling so unwell it would have just been so easy to stay in bed but you got up and did something and are being sensible by taking rest after that.

      I must admit Diane I've been feeling a bit down and discouraged today. I have to meet the boss of the job I'm most likely going to lose today and the whole circumstances and reality of everything is hitting me. I feel so guilty that I have been feeling I don't want to go back to that job and to the stress of it all, feel like I'm taking the easy way out and it has weighed down on my mind so much - I worry I won't be able to forgive myself and move on if I throw away something which was a big part of my life. 

      Sorry for my moaning Diane, just grateful for you being on the forum and want you to know that you are contributing greatly to helping me and others just with your wise words even in the hardest of times for you. God bless you today Diane and praying for a miracle in your life and circumstances, in Jesus' name.

      Craig 

      Report / Delete Reply
    • Posted

      Thanks Craig,and im hoping all goes well when you see your boss today, and don't worry your not moaning at all,its better to get things off your chest,i hope you make the right decision for yourself,it must be awful if your feeling so stressed about work,perhaps a fresh start is what you need,keeping you in my thoughts and prayers Craig please let us know how you get on,just remember your happiness and peace of mind is what is important......

      Report / Delete Reply
    • Posted

      Hi van,

      i love that.......CFS is doctor baloney, that made me smile. You are right in everything you say to ballerina. We will all and can slowly get better.

      a positive attitude helps, know that you will get better ballerina, because you will.

      eat well, balance life, KNOW you will get better and just keep slowly doing what you're doing adding more in to your life when you can, I would say I'm 99% better. Just a last little bit to go. the, going for a run, or taking a a ballet class bit to go.

      🤗

      Caroline x

      Report / Delete Reply
    • Posted

      Hi Craig,

      It's awful that you are feeling so guilty about your job. Please try not too. I also understand you not wanting to go back to work and if you feel like you have to there is obviously going to be that added stress.I obviously don't know anything about your personal finances but your health is everything, do what's best for you. And don't worry about what others think. Only you can live your life.

      i hope it went ok meeting your boss. Don't ever feel when your express your feelings on here that you're a burden, you're not.

      caroline xx

      Report / Delete Reply
    • Posted

      Thanks guys! I went to the doctors again today. My own doctor. She said she didn't believe it's ME and that I'm still affected by glandular fever and I'm making it worse by getting into stressful situations. However as an anxiety sufferer I'm always thinking what if?? I asked her how she knows it's definitely GF and she said because of the blood test. I said but I thought like 95% of adults have a positive EBV result, and she was like, I don't know where you've got that from but it's not true, the blood test showed you had GF, last autumn/winter.  So that makes me doubt her as everything I've read says the blood test doesn't really mean anything, it can only rule it out but can't confirm it. 

       Then I think, well I did have tonsillitis last October but I never really felt 'sick' like people seem to acutely suffer with GF. I only came down with this sickness in early December so how do I know that's even connected and the tonsils were GF showing up. A bit TMI but I was going through a stressful time then and got with a few guys - i.e. the kissing disease, but that was in October when I already seemed to have white tonsils, and I thought it took several weeks for it to show up as acute GF. I then moved home from abroad - a big stressor, I was working a shi*ty job with loads of overtime while on my days off going to interviews for other jobs, not really resting. I did that for a month, during which time I had a pain in my left ear, and my heart raced more than normal when I ran for the bus despite always having been very fit. I was having weird cramping/pain/tingling on the top of my right foot that I'd never had before, I also had 'head rushes' it's really hard to describe but it's like wind going through your ears, but an actual feeling not just like tinnitus.  One day I just felt dreadful, the light from the computer screen at work was way too bright and making me sick, and then sent me home, which is where it all really begins. 

      My symptoms on and off since December have been permanently swollen tonsils - on and off white patches, I got them removed 1 month ago. Flushing red face and chills, no fever, but it's like my body can't control its temperature. Swollen glands that have never gone back down, which I had never suffered with before even with viruses, however ruled out as 'clinically enlarged' in an ultrasound. I also have a hard lump, not like a lymph node, behind/under my left ear (maybe connected to the pain in my left ear at the start?), the ultrasound technician said it was my parotid gland and nothing was ever mentioned of it, despite it not being like that before all this. I don't know if it's an infection of the gland or a tumour or what, but it's something. I also find the flushing is worse over my left cheek and ear, my left cheek almost feels full, like it's slightly swollen, don't know if this is connected. 

      During my well(ish) periods I for sure have tingling in my feet and hands that I didn't used to have, as well as rushing feelings of chills that go up one side of my body, that I still have during a flare but worse. But during this 'flare' or whatever you call it, I have bizarre pain all over my body, joints, arms, legs, head, hands, feet, everything. It's like nerve pain, as well as stomach spasms, burning, cramping, back pain etc. I have a burning throat and sinus headaches, and a vibrating feeling in my chest. I also feel 'weak' to an extent that the thought of walking round at work for 8 hours is just impossible, however I can get up and walk around. Everything looks bright and I kind've have a foggy brain, I don't sleep very well, don't have much of an appetite. 

      I feel like I have huge bags under my eyes and with my flushed face I just look revolting. It may sound really superficial but it's really ruined my confidence and I don't want to be seen. I probably sound like a big hypochondriac but with what is said about GF, I do go through doubting phases and that I'm not dealing with something more serious, as none of these symptoms seem to be on any website about glandular fever - particularly the nervous system symptoms. To be fair my doctor today was reasonably understanding, I said I was scared I'd be like this forever, and as I was supposed to be moving away from home again for a new job soon it's all going to fall though. She said you won't and that she's sure I'll be ok at my new job as long as I keep a good schedule. But I literally can't stop crying and I just feel like my old life is gone forever. Even in my 'well' periods over the past 10 months I haven't been my old self. 

      Report / Delete Reply
    • Posted

      Thank you Caroline,

      I'm so grateful for your wise words of encouragement and understanding. I found yesterday such a hard day to deal with, I've got myself in a bit of a mess with my work situation and just want to have a good purpose and future again where I can feel like I can work and contribute and be a good person. I am lucky Caroline I've got good friends and family around me, I've been blessed and they have been helping me so much. I know you understand Caroline as have been through a similar kind of thing lately with your job and it's so hard and painful to deal with when you have mixed emotions, one day or moment you think one thing and the next you think or feel another about what's best for you and what to do next. Hoping and praying God can order our steps so we do the right thing and make the right and wise moves for the right reasons with His help!

      I hope very much you are looking forward to the studying you are starting Caroline - what you are going to study? Hoping you can meet some lovely new people and friends through it too and that it can be the start of a new beginning where the tough period you have been through can seem more and more like a distant memory as life improves!

      Craig 

      Report / Delete Reply
    • Posted

      Thanks Diane,

      I really appreciate your encouraging and supportive words. Yesterday was quite a tough day for me, I'm worried I don't take the right direction in my life or get back on track the way I would like to, I just pray God can help us all in this respect and help us to allow Him to help and guide us and to have the right application and attitude and take the steps He wants us to take through faith. I feel like I've messed a lot of things up, that I've thrown away a good job and become too lazy and unfocussed and struggling to get myself out of that cycle. Praying for God's mercy and help even though I've been foolish. 

      I'm still thinking about you Diane and want you to know that I still believe God is working behind the scenes on your situation right now, and even though you maybe can't see the manifestations of that work yet, that you will and it is going to be marvellous and signal a new beginning and health and happiness for you and your family. You're so right that happiness and health and peace of mind are priceless, I wouldn't take any amount of money or possessions in the world to replace those things.

      Craig

      Report / Delete Reply
    • Posted

      Hi Ballerina,

      The pain and hurt you have been through this last 10 months come across strongly in your message. It is only understandable that you would feel so worried and anxious about things - I know for sure when I went through the virus it affected me in a similar way and really knocked my confidence for six.

      Just on the point of the doctor saying such a high percentage of people aren't affected by the EBV virus - I would certainly beg to differ based on what I've read in HUNDREDS of places - here's one (of many) link that states it:

      https://www.sciencedirect.com/topics/medicine-and-dentistry/epstein-barr-virus-infection.

      Anyway that's neither here nor there really, perhaps what doctor is referring to is that most people aren't actively unwell with mono - so that is the encouragement to take Ballerina that people maybe take this virus at different stages of their life, many when young and don't get affected with symptoms like an adult, but then they do get better from things. 

      From all the symptoms you describe, it does definitely sound like mono you have been going through. So much of what you describe was what I experienced and went through too, and the longevity of it certainly points towards mono - but again please know Ballerina this doesn't last forever. It was about 10 months before I started to see a turning point and breakthrough - and it did take me a little while still to feel fully like my old self again after that, but life became more bearable and I could do things again and things improve gradually, thanks to God's healing hand. So please don't think because this has been going on so long you won't get better or make a full recovery - I truly believe you will Ballerina and remember everyone is different, some people take longer than others, but you MOST DEFINITELY will get there and things won't always be as hard as they have been this last 10 months. God willing you won't have to go through anything like that again, my experience was that Year 2 was very liberating after an extremely debilitating and awful Year 1 which involved many of the symptoms you have been going through. 

      Thinking about you Ballerina and remember there IS hope and there IS recovery from this, even after such a period. Your body takes extended time to get over this, but it doesn't mean anything else is going on, it just means that you are going to get better with time! Trusting God with that and believing better times are ahead for you - hang in there!

      Craig

      Report / Delete Reply
    • Posted

      Hi Craig,

      i hear what you're saying and I understand. I'm so glad you have good family and friends around you.

      im currently doing an access course, but would like to go on and study physiotherapy....one step at a time though😁😂 I'm not sure how tough this access course will be?

      caroline x

       

      Report / Delete Reply
    • Posted

       Thank you Craig, you've been helpful keeping my hopes a little bit higher, I've seen that you've replied to a lot of people's posts on this forum with their worries with your recovery story and it makes me feel that it's not impossible to get better, despite how I am still currently feeling.

       

       I'm going to leave my job, not stop work entirely but the schedule of my job I think is detrimental to my health. I'm a waitress and in my job that I've had since Febuary, the schedule is all over the place. I understand from a business point of view they need the staff when it's busiest, but I have different days off each week, most of the time not a 2 days weekend but two random days, some days 10am-4pm some days 5pm-midnight, and everything in between, I'm often asked to stay extra hours if they need me, they don't force me but it's kind've expected of you even if they don't explicitly say. I guess this messes with your sleep hygiene, because the hours where you have to be most alert and physically active are all over the shop, as well as when you're eating. I would end up buzzing and unable to sleep until 4am because I'd been on the evening shift but required to start at 12 the next afternoon. I feel bad leaving because I genuinely enjoy the actual job and love my colleagues, my managers have also been pretty nice about my illness. 

       Luckily I've been offered my old job back, it's another waitressing job but a smaller more casual restaurant with less hours, the hours are pretty much exactly the same every night. I used to go home and sleep around 2am (always been a night owl it's a good job for me haha) and get up late morning. I was then off for my 'weekend' every Monday and Tuesday where I would well and truly chill out ready for the new week.    

       I'm also going to move back out of my mum's place, it's a risky move if I get sick again, but if I do there's nothing stopping me moving back. As much as I love her, living together stresses me out especially with her partner who I don't particularly get on with, he doesn't seem to understand that when I work late at night it means I need to sleep late, and shouts at me to get out of bed around 9am, so I never get a true lie in even on my days off, I feel like I'm always walking on eggshells. I think the stress of them breathing down my neck (sorry mum <3) also contributes to my illness. 

      I don't know if this strategy is going to work, but at the end of the day, the requirements of my current job can't change - it's a big chain and that's just how head office demands the hours, and I'm just going to be stuck in a pushing/crashing cycle. 

      Looking back I've always been a very sleepy person, I used to really struggle to get up for school, I used to think I was really lazy but I really am just more alert late at night. However even before this 'GF' illness I used to skip things to sleep, I once missed out on a matinee performance at the theatre that I'd paid a lot of money for because I just couldn't get myself up! This kind've 'tiredness' is different though. It's more brain fog, pain and temperature control problems, mixed with insomnia and tired eyes/light sensitivity. 

       I have to admit I've been stalking the ME/CFS forums, torturing myself, so many symptoms seem to fit, I've seen people that have 'recovered' and then had a terrible crash leaving them worse than before, people that have just never got better etc and whose lives are in tatters. It really is so so depressing. And it's not an impossibility considering post illness seems to be a common trigger sad I just can't shake it! 

      Sorry I've just been on a ramble that you won't be interested in but just feel like I need to let this out with people who understand. I've been out to an art and a french class today, even if I still felt bad it helps you feel less isolated. I also realised there's a girl I used to go to school with that had CFS during her uni years, I don't know how she got it, but she seems to be working in a successful job now, not sure whether I should reach out to her or not, we were friends but not like best friends I don't want to seem weird. lol

      Report / Delete Reply
    • Posted

      Thanks Caroline, I really love to read your messages because your kindness and encouraging words and wisdom really do shine through. Grateful for you on the forum here!! Thanks for the kind words for me too, yes I'm very lucky with those around me and sometimes as you say we just need to be better at focussing on the good things than the hard things, it's not always easy when things don't seem to be going too well as you know, but hoping and praying God can give us the right wisdom and attitude to approach our situations in the right way!

      Oh good luck with the access course!! Do you mean Microsoft Access or something else? Oh I think you would make a great physiotherapist Caroline, as well as the practical knowledge physio's need the people skills and the ability to communicate well and offer hope and encouragement and explain things well - and I know most definitely from reading your messages to me and others over a long period that you have those skills in abundance! I would love to get someone like you as my physio!!

      Craig xx

      Report / Delete Reply
    • Posted

      Hey Ballerina, 

      You didn't ramble on at all in your message, you explained things very well and I really do empathise with much of what you say having either experienced it myself in the past or experiencing similar feelings / emotions at the moment with my current health issues. 

      In terms of work, absolutely it sounds like you are doing the right thing, please don't worry about the requirements of the work place or whatever, your health absolutely comes first and I hope that moving back to your old job can allow you to be in a more settled and restful pattern and not have to do so many extra hours and things. I really understand because I have had to be off work for over a year now because of health issues and have felt guilty and terrible about it, but remember sometimes it's down to circumstances and that circumstances change and won't be this way forever. 

      What you write about your situation at home and moving out all makes sense too. These things are never easy to decide on, especially when feeling so fragile right now. Remember as you say if you move out and things are too much or you need some extra help, you can always move back, so keep that in mind and let that take some pressure off you. And of course if there are elements of staying at home that is causing extra pressure too then hopefully those will be removed by making that move - do what you feel is right and talk to someone you trust and maybe isn't too close to the situation either about it, and hoping and praying God blesses your steps with this. 

      I definitely think you're being very hard on yourself about being tired and lazy - I was always someone who struggled to get up in the morning too, remember most of the people in the world feel that way! I can tell that you are a hard working person Ballerina, and because you need extra rest right now is in no way lazy or anything like that - as you say the fatigue this virus causes is just overwhelming, and for me it was a new level of tiredness and feeling drained - so it's absolutely important to rest and be kind to yourself, and once you feel better (and you WILL) you will be able to build up activity gradually again - but for now remember give yourself time and space and don't take on too much with work or anything right now. It's hard when you want to be active and feel like you can't be, I know so much it's hard, but remember things do and will get better.

      I still believe that you are going to get better Ballerina and that CFS / ME is not going to be an issue. I went through the same painful experience of worrying about this and searching for answers and encouragement on forums and things - remember it's only generally the worst and bad stories you read on there, not about the vast majority of people who do go through such an awful time with this virus for an extended period but then do get fully better! Caroline made a great post I think it might have been in another thread that her doctor reassured her and told her that although into the second year for her, it can be very normal for your body to take this time to recover from GF - my experience was that Year 2 was SO much better than Year 1 - yes I still had to take things easy and could only work at a part-time basis during the time, but remember the period you have been through, this first year, is BY FAR the worst and I truly believe things are going to improve and get better for you. 

      Thinking about you and do keep in touch and let us know how things are going - and remember you ARE going to get through this and get well again - this is the best forum to stay on because it has lots of people currently going through GF and lots of people who have been through GF too and can offer real wisdom and experience that this thing does get better, all people (including myself) who thought things might never get better with this because it was so intense and horrible and went on so long. Hang in there and I'm still believing in your recovery and breakthrough in this situation thanks to God!!

      Craig

       

      Report / Delete Reply
    • Posted

      You are not alone. Everything that you went through, I went through. Foot pain,  light sensitivity, body not being able to control temperature etc. this virus sucks. Stress of life doesn’t help either. I got infected mid 2016. Didn’t get really sick until around January 2017. Since then every mono symptom known to man I have had. No one will understand why you may still suffer. I made the mistake of working while I was sick. Don’t do that if you can help it. I wish you luck on your recovery road. 
      Report / Delete Reply
    • Posted

      Hi Craig,

      , I meant an access course to be able to go to university, I never did A-levels so I'm doing this before I can start a course next September.😁😁. I'm so hoping I do ok so I can study physiotherapy, this will be interesting to see how well I cope as well!!!!

      xx

      Report / Delete Reply
    • Posted

      Thank you smile it's hard because I've had mental health issues and I've always thought 'at least my body is healthy' but now I have both, while I see people around me that have a healthy body and mind I'm just desperate for it. I hate to sound like I feel sorry for myself but at the moment I really do hahaha. 

      I do have to work to be able to live, and for my sanity, but I'm looking at scaling back, I'm changing jobs, same shifts each day with no overtime so I can have a reliable sleep pattern. 

      How are you doing these days? Do you feel you've improved at all over the 18 months? I hope you're not struggling too much

      Report / Delete Reply
    • Posted

      I am better than what I was this time last year. I pushed through. DON’T DO THAT!!!! I am paying for it now. I have probably damaged my body. I also had to work because I am a single parent. Most people don’t understand or really care when it comes to this illness.This site is really good to find people going through the same thing. I am beginning to forget what normal feels like. Craig has been a real life saver. He has encouraged a lot of people. Rest when you can. It truly helps. 
      Report / Delete Reply
    • Posted

      Great stuff Caroline, I know it must take courage to go and do studying later on, I know I would find it hard and especially after going through what you've been through this last 18 months. Just walking through that door to give it a try will be a massive achievement in itself Caroline. Hoping it all goes well, and if maybe it's not for you or whatever then that's okay too - but things in your life are going to get better and hoping and believing that this is going to be a great and exciting time ahead for you!!!

      Craig x 

      Report / Delete Reply
    • Posted

      Hi Ballerina,

      It is totally understand you are feeling how you are feeling, you have absolutely nothing to beat yourself up about and have shown courage to even keep working and doing things to help yourself. I know how awful it feels when you are unwell with this virus and you feel like everyone else around is doing well and getting on with their lives - it's not always the case as it seems but sometimes it feels that way I know and it can make you feel so down. Low mood and depression with mono is extremely common, the longevity and intensity of the virus make it so, but remember this is going to get better and as your body gets better you will feel better too - but for now just remember it's okay to take a step back, rest when you need to, not put any pressure on yourself. Try not to be on your own too much right now, even if it's just sitting in with friends and family or even just having a nap in the same room as them!! Let them know you need a boost and ask them to help keep your spirits up, it's extremely difficult to do when going through this and just want you to know I'm thinking about you and truly believing, because of my own experience, reading other's experiences and faith in God, that absolutely you are going to get through this and get better again, even if it's not today or tomorrow or next week even it will happen.

      You must be so tired and weary with things going on this year Ballerina, but remember there is always God and He is the great healer and I believe He is going to take you to a place of recovery and hope and restoration again. Remember with this virus a common element as well seems to be staying or feeling 'stuck' at the same hard level for a long time, many many months often, and then moving a big step forward in only a short space of time. It's very strange, but with myself and with other stories I've read, there almost seems to be a 'lightbulb' moment that your body has, where all of a sudden it feels it knows how to get this thing under control once and for all and things start to feel much better. Of course it can take a while to get to that point, but I do truly believe that breakthrough is coming for you Ballerina and you've been through the worst and lowest period of this virus - hang in there and hoping and praying for God to move and for the manifestations of Jesus' wonderful healing to be seen in your life and circumstances. 

      Message any time when feeling low or whatever, as Brent says some really wise and encouraging and knowledge and understanding people on the forum here - we're all here to help and support each other and with God's help we're going to keep going until you get better Ballerina!!

      Craig

      Report / Delete Reply
    • Posted

      Thanks as always for your kind and amazing words Brent. I still think you are WAY too hard on yourself in terms of thinking you overdone things and didn't rest as much and damaged your body. Remember virtually EVERYONE (me included) does the same in the early stages of this virus, because you don't know then and often doctors don't explain it well enough how it works and you try to keep going as much as possible as it's a natural response. 

      It's important you know Brent you haven't done anything wrong and haven't done extra damage by trying to push through earlier - it's not your fault Brent and you've been through so much stress during this time I know. I for one still believe that how you're feeling now is not how you're going to be 'stuck' or feel always - I still believe you are going to get better and God understands it's hard to hold onto and see hope when something persists so long and you start to forget what things were like before or feel optimistic about anything - He is going to strengthen you to come through that Brent and knows you're weary and tired of this and are desperate for something to change, just a spark of recovery. I still have belief in full recovery for you Brent, I still trust God with that and even though it's not easy to see it right now, He's working in the background and has a good reason for this. God still has amazing plans for you and needs you well for that and is always fighting for you - so let Him take the strain and remember you don't need to fight it yourself, it's okay to rest and just say 'okay I don't know what's going on but God does'. 

      Thinking about you Brent and even if you're struggling to believe yourself right now, that's okay because God understands and others are believing for you - I have great belief that you are going to get better still thanks to Jesus. Hoping for a good and settled period and do keep in touch let us know how things are going.

      Craig

       

      Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up