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Mono (glandular fever), guilt, and desperation

Posted , 19 users are following.

Sarah0350
Sarah0350

I've had GF for nearly ten weeks and I've been off work the whole time. The past few days I've been unable to eat or bathe or even stand long enough to brush my teeth. My friends and colleagues are starting to question all the time off, saying helpful things like "I had mono for two whole weeks when I was 14 but my parents made me attend school anyhow", or asking if I could possibly make it to the office for half a day for an important meeting. I'm 34, (was) a recreational athlete, and I don't miss work lightly. There is no question in my mind that I'm unfit to work (or even drive to work!). I literally have insufficient energy to take a shower. I can't sit up for more than a few minutes due to spleen pain and nausea. Am I just being a pussy for staying mostly in bed this long? I have tried to go for short walks or to get a few groceries, but the muscle pain, nausea, and lightheadedness are miserable. The fever is long gone, but I'm still getting the sweats and shakes and intolerable body pains. I'm beginning to get very scared that something serious is wrong because I'm completely incapacitated by this illness and I'm not seeing any improvement. I'm desperate to feel better and to not be so dependent on my boyfriend for all the shopping, cooking, cleaning, etc. It feels like I'm losing my mind. Someone please tell me I'll wake up one day soon as my old self.

1 like, 352 replies

352 Replies

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  • Mono_too
    Mono_too Sarah0350

    Posted

    Hi Rhonda,

    My daughter is not dloing well at all, she had a flu and it has set her back, I was feeling better and seem to be having a small relapse and have had low energy and little appetite. I am feeling discouraged.

    • rhonda21886
      rhonda21886 Mono_too

      Posted

      This virus is very difficult to deal with physically and emotionally! I'm at 12 months and still have symptoms cycling through and fatigue. Hopefully you and your daughter will not have symptoms fo as long as I have!

      I still speak aloud to myself pointing out where I once was and areas that have improved. My appetite has dropped off considerably. I'm struggling to eat enough to not loose weight. I have only lost 1 lb so far.

      This too will pass. You have been such an encouragement to all of us. Hope your spirit lightens soon and you feel much more healthy!

      Thinking of all!

      Rhonda

    • Mono_too
      Mono_too rhonda21886

      Posted

      Hi Rhonda,

      Thank you, I do need to remind myself that I am better than I was, this is my 10th month and I was feeling pretty good 6.5 to 9 months and went back to working to much and then I noticed about 20 days ago I wasnt feeling that well so I guess it is back to resting.

      DId your appetite get better and then go away?

    • rhonda21886
      rhonda21886 Mono_too

      Posted

      Yes, my appetite had greatly improved then dropped. Even slightly nauseous at times.

      It is so hard to know how to handle getting back to just simple activities of daily living!

      There are better days ahead and each day they are closer.

      Rhonda

    • Mono_too
      Mono_too rhonda21886

      Posted

      How strange, mine has done the same thing. I hate the nausea. Did you notice this as you tried to resume a normal routine?

       

    • rhonda21886
      rhonda21886 Mono_too

      Posted

      Yes! That's why I said it's hard to know how to get back into activities of daily livingsad I am trying to rest adequately! So looking forward to waking up and feeling normal and it lasting!

    • Mono_too
      Mono_too rhonda21886

      Posted

       Rhonda, I am sorry this is happening to you too, but maybe it will help others from jumping back in to quickly. I was just so happy to be feeling better, I just assumed it was over. Hopefully our immune system will fight back quickly.
  • craig07920
    craig07920 Sarah0350

    Posted

    Hi everyone,

    Ths forum looks different since I was last on!

    Path, sorry if I have caused any confusion in any of my messages. Thinking back exactly it was the end of September I started to feel unwell and I would say that the big step in my recovery came around August time the next year. So it was probably about 10 months, although like many others I seem some glimpses / hope of recovery in the 1 or 2 months before I took a bit step forward and then had quite a bad relapse for a few weeks. I would definitely say the first 6 months was the worst for me in terms of feeling awful most of the time, although it didn't mean it felt any better in terms of fatigue or normality after that for a good while still.

    Everyone's experience is different I know that for sure in terms of timescales of recovery, but the important thing to remember is that the end result will be recovery for you and everyone here on the forum. Thinking about you and hang in there, I don't believe recovery is far away.

    So sorry to hear about your daughter Mono and your own struggles Mono and Rhonda - want to reassure that even if you think you have went back to things too quickly or whatever, it doesn't mean you won't recover, you still will. Every dip / relapse has an up side to it, I found my relapse just before I felt things starting to get better was quite a bad one leaving me disillusioned and struggling for hope, but in turn I think it was that relapse which was the final push of my body starting to get on top of the virus and kick it out. The same will be true for you guys with these current relapses, I truly believe that.

    Thinking of you and remember there IS hope today, God is there and full recovery IS happening and you will see the manifestations in your life - I totally and completely believe that 100%. I know you guys must be struggling to feel optimistic or believe that yourself just now and are weary having went through this for so long - but better days are definitely on their way I believe God is guiding me to say that to you today - for you Mono, for your daugther Mono, for you Rhonda and for you Path.

    Craig

    • brent_83487
      brent_83487 craig07920

      Posted

      Craig, you have been such an inspiration to all of us. My advice to everyone who is on this site. Take time to rest, your health is more important than anything. I had to learn the hard way. I have been sick for 12 months. It started with a tick Bourne illness followed by mono and a divorce. I have always been a driven person. Not letting anything slow me down . I thrived in stressful environments. I thought I could push through all of these things and come out ok on the other side. I did not. I now  have cfs and there is nothing I can do about it . I look back now at all the times my body said "stop" and I didn't listen. I always wanted to go just a little further. I now have vision problems, concentration issues and joint pain that won't go away. So to everyone on this site. Take your time and rest. I have lost a part of me that I may not get back. I wish everyone the best of luck and I hope that everyone will fully recover.

    • craig07920
      craig07920 brent_83487

      Posted

      Hi Brent,

      What a terrible time you have been through, just want to let you know I'm thinking about you and still rooting for your recovery. I think you are being too harsh on yourself, whilst continuing to work / push through the virus makes it more difficult to deal with, I don't believe that has compromised your recovery in the long term - it might have set it back a bit and that's why it's taking a bit longer, but I still fully believe you will recovery TOTALLY Brent, so hang on to this hope today, I know it's hard to do that but just trusting that God is there and will take these struggles away and bring healing.

      Excellent advice for everyone here - thanks so much for the kind words also, I really appreciate it. But most important thing is we want you and everyone on the site here to get well - doctors might say CFS and you just have to accept it or whatever, but in no way am I accepting that at all, I've seen that happen to so many people (including myself) and were still able to make a full recovery - and I totally, truly and genuinely 100% believe you will make a full recovery too Brent - hang in there I know it's tough, but you will see the manifestations and I believe it's much closer than it feels right now.

      Take care and just take it one day at a time (don't beat yourself up - you didn't do anything wrong by continuing to be active and it won't hinder long term recovery)

      Craig

    • charlotte81811
      charlotte81811 craig07920

      Posted

      Thank you for all your encouragement, I don't know how you do it. My symptoms first hit in early June--terrible sore throat, full body rash, fever, severely swollen nodes. My doctor thought it was scarlet fever and had me come in for a strep test, which of course was negative. Then came weakness, swollen spleen, blinding headaches. It's been 2 and a half months now, feeling better but still not quite myself. There are days of complete fatigue, depression and muscle weakness, followed by days where I can actually get out for a bike ride or go to a recording session (I'm a classical musician). So many ups and downs. Sometimes I still fall asleep on my feet, luckily I haven't hit my head, or any other vital part, before I jolt awake. How long will this continue?

  • rosanna27156
    rosanna27156 Sarah0350

    Posted

    Honestly tell them to p**s of lol! It's the most horrific illness I've ever come across! And it's not always visible to the eye because like me I only have symptoms I can feel, my husband is a joke! Tonight he came in and said don't just sit there go and finish the dishes! When i finished them he said I don't know how much longer I can put up with your laziness! We got married 2 months ago he said if this is what married life is like I wouldn't of signed on the dotted line! I feel like spitting in his tea so he can have a taste of this awful illness(joke)! I have a 2 and 3 year  old I look after in the day as well it's sooo hard!! Xxx

    • Mono_too
      Mono_too rosanna27156

      Posted

      Just wait until he gets it, it will be the end of the world, Its funny how understanding we become once we have the experience.
    • rosanna27156
      rosanna27156 Mono_too

      Posted

      I don't think he will, we were kissing etc on the honeymoon I've had it 5 weeks, he got tested last week and nothing, he never gets anything! He's treating me horribly saying I'm lazy and putting it on and everything is the end of the world with me. He said you just have to get on with it. I told him someone I read had it 9 months he said typical with u worst case synecrio he said I can move out if that's the case! 😳

    • Mono_too
      Mono_too rosanna27156

      Posted

      Oh no, yikes. I am glad everyone is here to share stories it makes you feel less alone. Good luck.
    • rosanna27156
      rosanna27156 Mono_too

      Posted

      Thank you! How long have you had it? What she your symptoms? Xx
    • rhonda21886
      rhonda21886 rosanna27156

      Posted

      So sorry he is not supportive! I am in month 13 now and still need the support of my husband , family and friends! You will find support on this forum because we understand how difficult this is for so many reasons!

      Prayers,Rhonda

    • Mono_too
      Mono_too rosanna27156

      Posted

      Since October, I started feeling better at 6.5 months and then had a relapse last month, I am sure yours will not last that long. I had fatigue,nausea,palpatations,shakiness ect, ect. It does pass eventally just rest as often as you can, not easy with little ones. 
    • Sarah0350
      Sarah0350 rosanna27156

      Posted

      Being treated like that and called a faker isn't going to help you recover. The added stress of being reminded of your currently limited contribution to the household must be awful. How old is your husband? He sounds like someone with zero experience with illness. Have you got other family who is supportive? 

    • Mono_too
      Mono_too rosanna27156

      Posted

      I forgot to list muscle aches, It is like having the flu for month on end.
    • charlotte81811
      charlotte81811 rosanna27156

      Posted

      Are you able to eat? I could hardly eat for about 5 weeks. Lost 15 lbs. Was already lean and athletic before the illness, didn't need to lose more. Is your spleen swollen too?

    • 40with.gf.
      40with.gf. charlotte81811

      Posted

      Hi Charlotte , sorry for chipping in, 

      i think I must be the only one who has GAINED weight, just over a stone so far😳. 

      I have all the other symptoms.. Getting slowly better. But not right yet.

      Caroline.9 months in

    • rhonda21886
      rhonda21886 charlotte81811

      Posted

      Hi Charlotte, I lost weight. Still struggle with poor appetite. Better but am not back to myself.

      If I look back to thework beginning of symptoms till now I can see quite a bit of progress. If I look at day to day it is so so gradual it is difficult to see or feel. Fatigue, muscle pain and emotions are still hanging on but not as severe or frequent as before. The last 3 days have been very low energy, muscle pain and low feeling. I know these will fade into better days.

      Rhonda 13 months in.

    • charlotte81811
      charlotte81811 40with.gf.

      Posted

      You're lucky with the gaining weight part. My spleen was swollen and could only eat a few bites before feeling very full. I really started wondering if I might actually starve. Your mind starts playing tricks, especially when you're still feverish. Plus, my throat was so sore and as red as a slab of raw beef. When the full-body rash came on, my doctor thought it was scarlet fever. Nobody needs that kind of a scare.

    • 40with.gf.
      40with.gf. rhonda21886

      Posted

      Ahhh Rhonda,

      thats such a long time to have to deal with this. So mentally and physically wearing. Are you working or able to have evenings out?!

      im doing neither yet.... I hope it ends for you soon. 13 months is enough.x

    • charlotte81811
      charlotte81811 rhonda21886

      Posted

      I understand that phrase "Just not feeling like myself". I have to try not comparing each day, because one day I take a bike ride, the next, depression. Falling asleep on my feet, exhaustion.

    • 40with.gf.
      40with.gf. charlotte81811

      Posted

      Hi Charlotte, 

      gosh, that sounds really rough. I have a sore throat but nothing major like that. Didn't have a rash, I suffer with the tiredness, low mood depression(sometimes) and arm aches. Brings me to a standstill sometimes.. 

       

    • 40with.gf.
      40with.gf. charlotte81811

      Posted

      Hi Charlotte, I used to do that and still do.... Compare each day, when they can be so different! And demoralising when you think you're getting somewhere and then crash. 

    • rhonda21886
      rhonda21886 40with.gf.

      Posted

      Not working, no evening out. I am able to occasionally go out to lunch with a friend which I am grateful!

      We surely shouldn't use any day as to what we will be feeling like the next or even one hour to the next for me.

      Looking forward to full recovery for all of us. So thankful for this forum where I find good will, support and encouragement!

      Thank you Caroline!

      Rhonda

    • 40with.gf.
      40with.gf. rhonda21886

      Posted

      Hi Rhonda,

      well, I suppose a lunch date out is improvement from the beginning?! Not some thing possible a few months back I would imagine?!

      thats something my doctor said, look back and see how far you have come.

      i really hope you're improvement starts speeding up.

      i managed a swim (more like a bob around) today, actually made me feel good, dare I say it?!? 

      Thats the other thing, I'm never sure if I should do something, whether it will set me back, or make me feel worse, or do me good??🤔.

       

    • Mono_too
      Mono_too 40with.gf.

      Posted

      That sounds just like me, never sure from one day to the next. I guess I will continue to try and do things and hope for the best, I think it helps to keep us conditioned.
    • rhonda21886
      rhonda21886 40with.gf.

      Posted

      I'm not sure what is best either. I just knowkeep that if I do nothing or if I do something I still have dips so I am going to rest when my body gets angry and hurts and fatigue sets in.

      When I have energy and strength I'm going to do activities.

      Thanks for your encouragement and support!

      Rhonda

    • charlotte81811
      charlotte81811 40with.gf.

      Posted

      I have the same dilemma. But luckily, since I also have ADHD, these dilemmas don't have long to ferment in my mind. I usually just go for it, sometimes pay for it later.

    • rosanna27156
      rosanna27156 Sarah0350

      Posted

      Hi Sarah, he's 33, my family are absolutely amazing! I'm so lucky in that way, my dads booked me in and paid for acupuncture and a massage tomorrow and offered to watch the kids whilst I go, hoping that will help with the neck, my sister has come round helped with washing, mums come and helped when she can. It's just my husband he just doesn't get it, he still thinks I should do everything and says I need to get over this and quick!!  Xx

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