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What is everybody’s life like ? Do you go out ? Socialize ? Or just stay in bed !

Posted , 8 users are following.

lori93950
lori93950

Wondering and being nosey as to how everybody’s day goes.

Do you stay in bed all day?

Have you stopped going out for dinner ? 

Do you manage to keep the house clean and do errands ? 

If you do feel ok and go out one evening do you suffer the next day ?

Can you drive ? Or do you get anxious and wobbly ? 

My life has become so small and this virus has scared to hell out of me . I’m so nervous to do anything ‘normal’ in case I cause a setback which just happened a few weeks ago . 

0 likes, 25 replies

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  • Sarah0350
    Sarah0350 lori93950

    Posted

    I move from bed to couch most days. I don't work or socialise. I very rarely drive due to weakness. We hired a house cleaner who comes twice per month. If I feel relatively good and do something (help hubby with shopping, an outing, cooking, etc.), I definitely suffer later for hours or weeks or months. It's been over 22 months since I got mono. You?

    • lori93950
      lori93950 Sarah0350

      Posted

      22 months !! Can’t believe you’ve suffered for that long it’s only been 6 months for me and it’s driving me nuts. So depressing .

      I wake up lie in bed for hours manage to force myself out of bed around 12 noon . I try to do a few things but feel so weak dizzy ... sometimes I have to turn back home . 

      I manage a walk at the beach on ok days 

      Some days I’ve been ready for bed at 3pm but manage to stay up until 6.30.,

      I’ve not been out at night for many weeks but if I do like you I suffer the next day same goes for cleaning the house ... even just talking exhausts me . 

      I hope you are getting the care you need along with supplements and a good dr who can monitor your progress. I’m doing everything in my power right now to just rest boost my immune system and trying to stay calm and not let this break me . At least you have your husband ... it’s tough doing this all alone . 

    • lori93950
      lori93950 Sarah0350

      Posted

      Also I had a guest here who drove  me 5 hours to go and see a specialized dr .... we stayed overnight but driving 10 hours in 2 days was too much and has taken me 2 weeks to get over it ! 
  • will_53771
    will_53771 lori93950

    Posted

    An average day for me is:

    Wake up, move from bed to sofa, cook breakfast, back to sofa until lunch, make lunch, back to sofa, sit at computer for a bit, force myself to do a 5 minute walk, back to sofa until dinner, shower, sofa, bed.

    I have a haircut booked for Tuesday which I’ve been putting off for months. Yes a haircut is the most exiting thing in my life right now. 

    • will_53771
      will_53771

      Posted

      And I can drive but it takes a lot out of me 
    • lori93950
      lori93950 will_53771

      Posted

      I know to have any appointments is such a big deal as we have no clue from day to day how we are going to feel . I know for me depending on my sleep ( which is so interrupted now ) my day can go from ok to just awful. 

      And making just one appointment is such a big deal. I know personally not bothered anymore about how I look I just want to FEEL better inside . 

    • will_53771
      will_53771 lori93950

      Posted

      I’m the same as you, this is the longest my hair has been in years and I look like a mess, I’m only getting it cut so my parents will stop having a go haha.

      I’m sure it’s the same with you but the sole thing I want is to feel better, other peoples problems seem trivial in comparison. The health of a person is really all that matters at the end of the day and it’s taken this for me to realise it. 

    • lori93950
      lori93950 will_53771

      Posted

      You are so right Will .... this is so different from anything else ...it’s nuclear ! And yes health my God to just feel better ... would give anything .
    • shelly67004
      shelly67004 lori93950

      Posted

      The worst is when I wake up and I’ll be feeling a little better and by mid way through brushing my teeth, my energy will just go away. So any plans that I have made in my head for that day I have to forget, get back and bed and be happy I was able to brush my teethsmile

      Yesterday I was able to brush my teeth, take a shower, AND get dressed, AND dry my hair! 

      Before I got mono, that would just be a regular morning. Now it’s a huge victory! I also had enough energy to walk down my stairs and outside and lay in my driveway to get some sunshine.

      Today unfortunately is another beautiful day I have to see from my window next to my bed. 

      But I enjoy those moments that I get to feel like my old self again so much!

      I’m 10 months in, so I can see some progress from where I was at 6 months in. 6 months in I was still suffering so much every day. And that was around the time when friends and family would be like, you’re still sick? 

      I started to feel embarrassed to still say yes, that they would all start to think it was in my head. I almost thought about telling them I was diagnosed with lupus or MS. Something they could wrap their heads around. Because ya know, when their friend’s cousin’s neighbor’s kid had it in high school, he was only sick for 2 weeks....

      The internet has been both great and of course terrible. Because we know that there are others who struggle for a long time to recover from mono like we have and we are not the only ones and while awful and lengthy, we will make a full recovery.

      And the terrible, reading all of the CFS stories that were triggered from mono from people who never recovered. 

      And that we need this supplement and that it’s the mycotoxins from the mold we must have in our house and we need to be taking valtrex everyday because this study showed this, but this other study showed this and I’m sure we have all been down the internet rabbit hole of horrors.

      I tried valtrex for a few weeks, but it gave me a headache everyday so I stopped. I took several weeks of antibiotics for the chance that I could have had a false negative for mono because 2 people in a random study showed positive for mono when they had Lyme disease.

      I’ve tried every supplement, diet, probiotic that I read helped someone on a random forum.

      Maybe it did help them and I’m very happy for that. But with me with everything that I’ve tried (even acupuncture which gave me the worst crash for the entire month of June) it’s just been time. 

      We will all recover. But taking it easy and giving our body time to do what it’s suppose to do will inevitably be how we all get better. 

      I know this year I have gone through the entire grieving process for my lost health. I’m now at the acceptance part. 

      I have accepted that I can’t clean or drive or walk my dog until I am better.

      I have accepted that I’m going to feel like crap and be stuck in bed for a year longer than I wanted to. But I have accepted that I will fully recover. 

      I have also a accepted that I probably won’t be able to keep all of the weight off that I’ve lost with being sick lol

    • lori93950
      lori93950 shelly67004

      Posted

      Shelly 

      Don’t even say this could be forever !!! Let’s erase that thought from our minds ! If we thought that we would not go on !!

      I too am on all kinds of immune boosting supplements ... nothing helping so far . A homeopath swears she can get me better so I’m giving it a try ... spent $1000’s on this ‘thing’ . The mornings and early afternoon is the WORST ... I seem to come around sometimes about 3pm for a few hours. So sick of this ! I mean really sick of it !!! 

  • johnny48998
    johnny48998 lori93950

    Posted

    This is my 4th time with Mono, and my longest bout of it yet.  I started feeling pressure/tenderness in my neck(caused by swollen lymph nodes), 4 months later my symptoms are more severe, I have fatigue, pain in neck (spinal region).  It is very hard to concentrate and in all honesty it is building depression for me.  My day:

    1. Wake up at 5:30 get ready for work.  Make smoothy (avacado, blueberries, banana, yogurt)

    2. Drive in to work

    3. Somehow muster enough energy (and lots of coffee) to get through the day.

    4. Drive to daycare, pick up my son

    5. Entertain / Watch / Chase / Play with my kid for an hour and a half until my wife comes home

    6. Either continue to watching kid or make diner

    7. Either watch kid or clean up diner

    8. Give bath to kid.

    9. Collapse on the floor at 8:00 - 8:30pm

    10. Rinse and Repeat.

    • lori93950
      lori93950 johnny48998

      Posted

      Gosh Johnny that is such a hard long day ... don’t know how you do it . I’ve started drinking coffee again too ... was  so sick of feeling ‘tired’ . 

      And yes depression is common with this virus sometimes I feel like my skin is crawling ... as feel so strange in my own body . I don’t know it ...me ...who I am anymore . 

      Stay strong I’m sure your son is your priority and at least brings you some joy ! 

    • lori93950
      lori93950 johnny48998

      Posted

      Just out of curiosity have the doctors explained what’s happening in your body that you keep getting this ? Most reports say you get it once and when you’re fully over it you won’t get it again as your body builds an immunity towards it . Do you have any other issues going on ? 
  • shelly67004
    shelly67004 lori93950

    Posted

    I’ve been reading these forums for  months since I got sick,  and it breaks my heart to know that other people are suffering as much as I am.

    I came down with mono hard and fast at the age of 34 in Dec 17. 

    I was so sick for 3 solid months, completely unable to get out of bed except to make the heroic journey to my bathroom 10 feet away.

     I lost 40 pounds and felt like my organs were going to burst out of me.

     I remember several times crying to my husband and telling him goodbye because I truly felt like I was dying.

    When he wanted me to go to the hospital, I refused because crazy enough I felt like I was too sick to go to the hospital. With how much pain I was in, the thought of the lights and noises at the hospital and the fact that they would have to get me on a stretcher from my second floor because I just could not move, I would always say- no, I want to die at home.

    After 3 months in bed, I felt better! 

    And from every bug or virus that I’ve had in the last 35 years, that is how it goes. You get sick and then you get sicker and then you get better.

    So I was up and cleaning and taking my dog for a walk and I thought it was all behind me. Nope. All of those mono symptoms flared right back up and put me in bed for another 2 months.

    I’m 10 months into this terrible virus.

    I still have very little energy and have to stay in bed most days, but I have to remind myself about some of the terrible symptoms I don’t have anymore.

    My husband has been wonderful with taking over all of the house duties while holding down 2 jobs since I had to leave my job. 

    I don’t know how anyone could do this alone. I always tell my husband that when I finally do recover, I want to burn this bed and never step foot in this room again.

    On top of the physical illness, the  psychological problems that come with it with being depressed about not knowing when or if you will fully recover and the anxiety when your brain wants to get up and move but your body just can not. 

    My best days are when I can take a shower and brush my teeth, and I really cherish the short times that I can walk outside and stand in the fresh air.

    I always tell my husband I know how it must feel to be able to fly.

    Because those rare days that I can walk around, I am so overjoyed by it that it has to be the same feeling that a person would get if they realized they could fly!

    There will be a happy tear in one eye because I can walk around and step outside, but a sad tear in the other eye because I know it won’t last and I’ll have to go back to solitare confinement of my bed when my energy goes away. 

    If I can just get better I will never complain about another thing for the rest of my life! 

    • david_65565
      david_65565 shelly67004

      Posted

      Shelly , What I have to say first is I hope you get better soon and good times are coming.  Glad to hear you are slowly doing better. This horrible virus has its zig zag recovery for sure. All though I don’t believe I was as sick as you have been I was bed bound for about 3 of the last 9 months. I’m doning better for sure with a ways to go yet. You have an amazing husband for standing along side of you and doing whats right to help you heal. You are a very lucky person to have that support. That makes me happy knowing that their are people in the world that don’t give up on another when times are bad. I was not so lucky my wife bailed on me during this time after 24 years of marriage. I will get over this horrible virus and be a better person afterwards just like you will. Stay strong and think positive.  

      Good luck to you and your life wish you well , Dave !!!!!! 👍🏻

    • lori93950
      lori93950 shelly67004

      Posted

      I said the same thing about my clothes ... worn the same sweatshirts and leggings for months ... going to burn them WHEN I’m better!

      I cannot believe all these stories it’s heartbreaking ! This thing is EVIL and the fact there is NO CURE baffles me !

      I’m so sorry you are having such a hard time but at least you have your husband ... I’m doing this completely alone . Sometimes I think it’s better as I can just lock myself away until all this is over ... don’t have to make conversation as that’s energy I don’t have . 

      Please God we all get better soon! 

    • lori93950
      lori93950 david_65565

      Posted

      Well they say David the rats are the first to leave a sinking ship . This is all part of marriage ups downs...  in sickness and in health . And this illness would test anybody’s patience but hey it’s not OUR FAULT ! We just got unlucky .. things must  turnaround and just remember the sprinter who got this awful illness then went on to win a silver medal ! I’m keeping that goal in mind . 

      For right now we can only do one day at a time ... we’re doing the best that we can ! 

    • shelly67004
      shelly67004 david_65565

      Posted

      David I am so sorry that you got sick and that she did not stand by you through this. It definitely tests a marriage, but I thought that moments like these, when we need our spouses the most is when they are suppose to step up and do what is part of a marriage. 

      I know I would do the same for him. 

      He broke his back very early into our courtship, and instead of dinner and movies, I was emptying his pee jars and driving him to doctor’s appointments.

      But I have been very scared at times that he’s going to jump ship.

       Especially since I have nothing to offer him, and he goes to work and sees women put together in their business dresses, and comes home to me looking like that sick sister Zelda from Pet Sematary. 

      When I do have a day that I’m feeling good, he records me up and walking and talking and like my old self again, 

      so when I’m having a bad day I can watch those videos to remind myself that I do come out of these crashes and I do feel better and look good, even if it’s just for a day. I always feel like I’m a ghost who was granted 24 hours to go back to earth. Because I get to go outside and be under the sun and I get to see my dog and my husband and I’m so happy to be out of the brain fog and standing and thinking, but at the same time I’m saying goodbye to all of it because I have no idea when I will feel better again. 

      It’s almost maddening to try and figure out what I did to have that good day.

      It doesn’t make any sense. I can eat healthy and take vitamins and feel terrible and I can also be so sick that I just want to eat pop tarts for a week, and end up having a good day. 

      But focusing on the symptoms I don’t have anymore so I know I am getting better helps. I used to scream and cry for hours because it felt like every cell in my body was giving birth. The lymph glands all in the front of my neck down to my collarbone would get so swollen and sore, that I could not take a deep breathe.

      But watching winter turn to spring and spring turn to summer and now summer turn to fall from my bed has been just so depressing. 

      December 6, 2017 is when I fell ill. 

      I know when that date comes and I’m still stuck in bed, it will be the worst day of my life. 

      And to be called the kissing disease?! 

      It should be called the worst you will ever feel for the longest time and might ruin your life disease. 

      I don’t know if you had any cognitive problems. But besides the brain fog that is slowly getting better, my brain felt like a 2 year olds! I went from forgetting words to having a difficult time putting together a sentence, to no thoughts at all in my brain. That was truly a very scary time. 

      But we are getting better! And as terrible as this year has been, it’s really showed me what is truly important and to not sweat the small stuff.

      There is a documentary I watched on Netflix about Hiroshima. There is an elderly Japanese survivor telling her story. At the very end of the documentary she talks about how she has tea near the area where she saw terrible things. How there are smiling happy families walking around going about their day. She can’t believe how normal her life is now considering what she went through and the devistation that is now a distant memory to her. 

      It made me cry like a baby when my husband said to me, see..that’s how you will remember this horrible time. 

    • lori93950
      lori93950 shelly67004

      Posted

      Oh Shelly I so feel for you ! I’m at the 6 month mark and have also said that I have seen spring pass summer and now fall is here . I’ve closed the curtains before it’s dark so many nights .

       I did have a few ‘ ok’ days this week and then today bam !! I’m feeling AWFUL cannot wait for the hours to pass so that I can go to bed don’t know how I made it through today  .

      This is the worst most evil thing in the world ! I cannot believe so many people are suffering for so long with no cure .... it’s a crime ! I never cry but boy have I shed some tears due to this thing ... 

      praying for recovery for you and everybody who is suffering . May GOD help us !!! 

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