Ruined my life...

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I am freaking out. I need my life back. I first got sick in January. i was out for almost 2 months. I went back to work sooner than I should have and I eventually lost my job. But my symptoms stopped. I had my health back for 2 months. I had high hopes. So I was going to go back to school and get a new degree in 2 years, a new life in a different field that would let me take care of my health. But I had surgery to remove a lump in my breast before my insurance was done. Its been 2 weeks and 4 days. My symptoms have all finally come back. Fever everyday, can't stay awake, brain is fogged. I conquered the depression but i have to get it together by July or I can't get the program started And financially, I'll be drained. Default on my loans, loose my rent controlled place. My parents are retiring and moving. They aren't particularly nice and they made it clear they aren't interested in helping. Did I mention I'm a single parent. I'm 34 and I feel robbed. Let alone what my child is feeling. He hasn't had a mother since January. Most days, I am alone in my house with a fever I can't shake. I am terrified I have hit chronic fatigue syndrome. Please, has anyone gotten their life back after reactivation? Anyone in disability? Anything I should bring up to the doctor? It's the last out of pocket visit I can afford.

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13 Replies

  • Posted

    I can't offer any advice as you know my situation. but I am really hoping you improve and things get better for you 😦 x

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  • Posted

    Hey Excited for Good,

    I can only imagine how frustrating that must be when you felt like you were making progress and then had the surgery and felt it has brought things back again with the fever and things. I want you to know that it can be very common to have a number of ups and downs during recovery with this, to reassure you that what you're going through is normal. I remember at times thinking I was making some slow progress but then all of a sudden I could just feel like I was almost back to square one again. It was so mentally draining and distressing as well as physically, I know you understand with what you've been going through.

    But please know that things will settle again - for me it took 10 months to really see a breakthrough, and it wasn't necessarily a smooth journey with gradual improvement - I almost felt stuck at the same level for a long time, with some zig zags ups and downs and then all of a sudden saw a big improvement and change in a short space of time. That can happen with this virus, and really want you to know that even though it feels it like at times, in no way are you back to square one - no matter how bad your body feels it is already six months down the road to getting this virus under control, and even if it takes a little bit longer don't panic because eventually it does get this thing under control and kick it out for good! And that's coming from me as someone who struggled so badly with it and at six months was just so weary and drained and felt like giving up at times.

    Things will change, your body has amazing powers of recovery - the low grade fever and terrible fatigue and lymph node pain were the things that lingered with me the longest - but they ALL went away and that first six months truly is the worst - I believe you won't have to go through anything as horrible or intense again, and even if it takes a little while longer for full recovery absolutely you will FULLY recovery and your body resilience and health will return.

    I'm thinking about you and believing that much better and healthier times ahead - believe me you will get that victory and breakthrough you need - it must be so hard coping as a parent at this time, and hoping and praying you have a good support network around you. Message any time - and one thing to keep in mind is that my experience was that Year 2 was one of liberation, recovery and good health - compared with the horrors of most of that first year.

    Hang in there and thinking about you - I am convinced in my heart that you are going to get better and God's healing hand is already moving in your life, and even if the manifestations are not seen, they will be, breakthrough with recover yis closer than you think...

    Craig

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  • Posted

    i had mono in January too. it started befinning of december and lasted about 8 weeks. i didnt really take time off work i only missed one week. i didnt know i had mono til i was near the end of the reallt bad physical symptoms. it has been a rough 6 months though. i developed very bad anxiety and depression while i had mono and ive been having a hard time with it. i have been in therapy because of it since the end of January. sometimes i feel totally better from the mono but then like last week i had a terrible stomach virus and now i am struggling with lingering fatigue since then. i dont know if im feeling fatigued from the depression or i feel like if i get stressed or sick since having mono is the fatigue a risidual symptom that kicks back up?! i dont know what to think. i just miss feeling good all the time like i used to. and it makes my anxiety and depression worse. i am the same age as you and i have 20 month old twins and i feel like im being such a bad mom, its so hard.

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    • Posted

      Congratulations on your babies. The fact that you even care about bring a good Mom is av great sign. Your babies can't quite talk yet, my soon is 5 and he's let me know his hate minimum is hugs. if he can get those, he'll work with everything else. Your babies are likely the same. I've read that mono can get activated from pregnancy. Did you have symptoms then? I went back to therapy too from the mono. This mono has deeply changed me.

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    • Posted

      Hi Jenna,

      Oh please in no way think you are a bad mom, because it's simply not true! You've been through such a terrible six months or so, and where you're at now is a common place where there is some improvement but still some frustrations and setbacks and fatigue.

      This phase passes too Jenna and as time goes on, the fatigue, low grade fever, awful symptoms all settle and become less and less and you feel more and more well, until you just feel like yourself again - it will happen Jenna. It was 10 months before I felt a major breakthrough, it can happen suddenly too after a period of feeling you are struggling at the same level for a long time, so hang there in - you will see further improvements over the coming months, I truly believe that given my own experience and what I've come to learn and know about the recovery path and timescale of this virus.

      And you will have lots of healthy and happy times with your children - truly you will - 100% I have strong faith in that for you today.

      Craig

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  • Posted

    it has changed me too. i hate it. i wish i hadnt gotten mono. it just caused a downward spiral of my mental health. i was diagnosed with ptds because it took them 7 weeks to figure out i had it. i thought i had a terminal illness until finally dr #5 did a monospot test. but i was already mentally declining. the ptsd led to depression and worsening anxiety and actually manifested as hypochondria. now i become convinced at every ache or pain or unusual sensation that i have some incurable disease. its awful. i took my boys for a walk this morning and i was openly crying as i pushed their stroller. i feel like ive been robbed of happiness. i used to get up and go to the gym every day, i was in great shape. i havent worked out this year besides walking which i couldn't even handle until april. i lost 10lbs and a full clothing size from the combo of the illness plus the anxiety and depression. i feel weak and fragile, exactly the opposite of how i used to be. i am just clinging to hope that ill feel like myself again. i had NO idea that getting mono as an adult could have this kind of negative impact.

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    • Posted

      The weight loss, the tears, the exhaustion are so relatable. I remember a friend of mine getting mono in high school. He said he slept for a month. He seemed fine after that. I am thinking now, well geez, I should have made out with him then, so I could have gotten this over with with a sturdier body. lol I woke up this morning with my face and neck swollen on the right. I went to the ER based on urgent care recommendation, and the ER was like. You're not dying. BYE. Didn't even test my blood. I have my last naturopathic dr appointment tomorrow. It's hard for me to walk . I am going to ask to be tested for HIV, Hepatitis A/B/C, titers, taxoplasmosis, ... any other ideas?

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    • Posted

      I hope you get on okay with your naturopathic appointment Excited, and hoping so much this swelling in your face and neck settles down. It's so draining to go through the intensity and severity of this virus - I empathise so much and remember how much of a long dark tunnel it felt like.

      But truly there is light at the end of that tunnel, there is recovery and full health again after mono - believe me - I struggled badly to see it when going through it too. God is good, He will bring you through. I remember feeling at times I just had no fight left - remember it's okay to rest, sometimes that's all you can do, that's what your body needs - resting is not giving up remember. Your body goes through so much with this thing but it WILL recovery - truly it will with God's help.

      Craig

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  • Posted

    II wouldn't join those Facebook groups I had to leave all of them because it's just a bunch of people complaining about how miserable they feel and all kinds of weird symptoms and it honestly made me feel worse

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    • Posted

      It's a good point Jenna about it being important to find the right kind of supportive group or network, be it through the Forums or Facebook or wherever. Last thing folks need when going through this is something that is going to make people feel worse, so be selective and stick with the sites / forums / pages where people are encouraging and supportive if possible.

      Craig

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