2.5 years in

Edited , 17 users are following.

Hi everyone,

During the first year of this illness I couldn't even imagine having a normal life again. The symptoms were just so scary and never ending (from the typical fatigue, sore throat and dizziness to sensory hypersensitivity, painful scalp, dry mouth, hives, rash and awful anxiety) and I felt the life I led before the virus had all but disappeared. For these reasons I also spiralled into depression which of course didn’t help anything. But there is hope! I'm pretty much back to 100% again now, working 36 hours a week, socialising like before and I even went on two overseas trips last year. The awful lingering symptoms of anxiety and dizziness have now FINALLY gone and I'm getting on with living my life again.

An important lesson I have learned for the best recovery is this: do not expect recovery to be a sprint race – it is a marathon for sure. You can’t fast track recovery by trying to push through and rush back to what you were doing before. It’s a grinding zig zag process of feeling like you’re recovering and then feeling like you’re right back at square one again, over and over. This is the normal recovery trajectory for this virus. Please continue to listen to your body and if you are tired, experiencing symptoms, not coping, then it’s probably your body telling you that you need more rest and care. I ended up taking 10 months off work in total. This virus isn’t anything to take lightly either. It’s been linked to more serious conditions which makes it all that much more important to take care of yourself now. Wishing you all lots of rest and support, and as quick a recovery as possible.

5 likes, 37 replies

Report / Delete

37 Replies

Next
  • Posted

    glad to hear you feel good. Im close to 4 years now and even though I improved a lot I still cant lead a normsl life. I attend university and thats alright but apart from that cant really do much more. However, for past few months I have finally stabilized and moving forward without any big crashes. I wish I knew what to do so much sooner. 4 years of missed life is a long time

    Report / Delete Reply
    • Posted

      I'm happy to hear you've improved a lot Lob and I hope you continue to improve up until you're eventually 100% again. It's really promising to hear that you're not having any flare ups. Hopefully 2020 is the year you regain your health and life again.

      Report / Delete Reply
    • Posted

      i feel like there is no point after this though. As if everything lost meaning. Even after I recover completely this is gonna take maybe even longer to resolve.

      Report / Delete Reply
    • Posted

      I'm sorry you are feeling that way but I can completely understand why you do. After being forced to live in a way that you haven't chosen due to illness, having to give up stuff you like doing, etc, having the virus rob you of 4 years, it's understandable that you might feel depressed and disillusioned at what life is like now. Living with this virus does whole heartedly suck, for sure! Please continue to have hope that things will get better though. It's a really promising sign that you've noticed an improvement in your symptoms, which hopefully means your body has turned a corner. For me, even after living with the virus for 2 years it had lasting psychological impacts like having terrible anxiety every time I'd feel tired after having a big day, and even developing a bit of health anxiety around cuts getting infected etc. I continue to work through these issues. This might take a bit longer to resolve for you too, but you can get through this. Also, i've worked with people who have had ME/CFS and they have also recovered completely over time. Please continue to have hope that things will return to being good for you again.

      Report / Delete Reply
    • Posted

      can you explain more about the people with cfs that recovered? i have been struggling for a long time like lob. i was told i have cfs. how long did it take for those people to recover?

      Report / Delete Reply
    • Posted

      Hi Brent, thank you for your message. I’m really sorry to hear that you’ve been struggling for a long time. A lady I worked with was diagnosed with Ross river fever in 2011 which then led to her developing CFS in 2012. I’m not sure how long it took her to recover but I know that she is back at work now (at a different workplace to mine), travelling regularly, attending festivals and raising her 14 year old son. I don’t know the intimate details of her recovery I’m sorry, and I didn’t mean to imply that. I just meant that I know of people who previously were floored with CFS but are back living functional lives now. I hope this can offer you and Lob some hope for your future too.

      Report / Delete Reply
  • Edited

    Hello,

    glad to hear you're doing much better. you and I share a similar timeline, I had my first big symptoms in August 2017. I got over the worst symptoms after about 4 months but had a couple relapse type occasions over the next year and a half. Now, I've been 95 percent or so for the last 6 months or so, working, traveling, climbing. the other day my mom got some news that she has some health concerns, and the stress of supporting her through it seems to have given me a minor flare up of symptoms, nothing to make me have to miss work or anything, but I can see that I still can be effected by stress more easily than before. Meditation has been one of the biggest contributors to my recovery, as I believe our bodies need help settling down after the trauma of these viruses. I hope all can remain hopeful and make the best lifestyle choices they can each day to support their recoveries.

    Report / Delete Reply
    • Edited

      Hi Nick, I'm sorry to hear about your mom, I hope she's ok. Great news that you've been able to regain lots of your pre-virus activities again. Yes, I also notice that i'm more susceptible to stress but like you, my most recent flare ups don't require me to take time off work, I just need to rest a bit more on my weekends etc. I hope you continue your run of good health and that your flare ups eventually disappear forever.

      Report / Delete Reply
  • Posted

    Thank you for the reassurance KS2017, and I'm glad you're doing well! Would you say that after about one year you started to feel better and could gradually do more activities? And did the relapses that you had became less intense?

    Wishing you all the best.

    Report / Delete Reply
    • Posted

      Hi Sadj, thank you for your well wishes, I hope that you are also making a good recovery from this awful virus. I did start to feel gradually better after 12 months but I would say that my main health breakthrough came more after 1.5 - 2 years. Everyone is different though so your recovery may happen a lot sooner than mine did.

      After the first year my relapses would still floor me and would last around 3 weeks, but after 1.5 years they would only last 1-2 weeks and were less intense. My most recent relapse was over Christmas (at 2.25 years) however this was because I’d just done an intense 3 week oversea trip to Asia, and I still didn’t have to take any work off due to the relapse, I just had to rest a bit more over the weekends. Please try to be patient as you too will recover from this. Make sure you continue to listen to your body as much as you can and take care of yourself in the best way you can.

      Report / Delete Reply
    • Posted

      Thanks for your reply. I'm almost 10 months in now after contracting EBV on a backpacking trip in Asia. The first couple of months I tried to ignore the fact that I was sick, which I still regret... Luckily, I live in an European country where sickness leave from work is not a big problem, and I have the possibility postpone some courses of my Master's degree. I feel that for the ones who are sick for a long time (say 6+ months or so), there is definitely a psychological component. So much anxiety does get in the way of healing, I think. I'm slowly accepting that I am sick, but I still have hope that it will get better. Messages like yours really help in keeping my/our hopes up, so thank you!

      Report / Delete Reply
  • Edited

    I could have written this myself, every single thing...when all this started 2 years ago I seriously thought that these symptoms would never go away, months just went by and I started forgetting what my normal felt like. Im so happy you are better and feeling like your old self! So am I, I feel much better, stronger and Im enjoying life again as much as I can...b12 shots helped me a lot and my young daughter that kept me going...However at exactly 2 years of this, Im still having some neurological symptoms that worry me, muscle twitching (its way less but comes and goes) but its the internal vibrating, like my insides are shaking that really concerns me,its there every day since this started, especially when I wake up in the mornings...just wondering if you had that and if it went away?? Thanks

    Report / Delete Reply
    • Edited

      Thank you for your message Vicky and for sharing your journey. I am so glad to hear that you’ve started feeling better and stronger. It’s such a terrible virus and you can’t really know what it’s like to go through unless you’ve gone through it yourself. I continued to have symptoms past the 2 year mark too, and feared that maybe these would just remain with me (for me it was the anxiety, dizziness and pins and needles), but over the past 3-4 months these symptoms have also disappeared. I do remember feeling an internal rocking sensation and being startled awake during the virus but I don’t experience these symptoms anymore. I wonder whether it’s just a slow process of the body regaining its equilibrium over time?

      Report / Delete Reply
    • Edited

      Thank you so much for the reply, not even doctors understand what we go through and just put everything down to anxiety.. I hope that its just a matter of time for this nasty symptom to go away, it seems that every month in this virus counts and slowly things improve...good luck thanks for giving us hope!

      Report / Delete Reply
    • Posted

      You are so right on doctors not really understanding this and so many times I was told it's anxiety. My doctor now is more understanding and helpful but it was rough with the past one who just wanted to put me on anxiety meds and would just look at me like I'm crazy everytime I mentioned my symptoms.

      Report / Delete Reply
    • Edited

      ​Hey Vicky, one of the longer running symptoms I experienced is similar to what you describe as internal vibrating. I would often have a sensation of what i called an inner pulsing, like i could feel my blood pulsing through my body in a more acute way. sometimes i’d feel it in my throat, sometimes in a limb or in my fingers, sometimes in my middle. im still not sure what it meant exactly, but i think it was related partially to my nervous system being kind of amped up and feeling things more acutely. This was one of the last symptoms to dwindle down, and it only happens now if ive been living heathily, and if it does come, its like a whisper compared to how it felt before.

      Ive seen several others have these kind of feelings so i dont think its extraordinarily uncommon.

      Report / Delete Reply
    • Posted

      (JustMeHere) I've been in the same position many times. I saw 4 neurologists when all this started because of my neurological symptoms, I seriously thought I had ms etc.. ALL of them just prescribed anxiety meds or antidepressants... one also told me "mid-life crisis" ....I always felt worse leaving the doctors office.

      Report / Delete Reply
    • Posted

      Hi, thanks for your reply...I thought I was having a seizure the first time it happened, that's how strong it was, a full body internal tremor... I know what you mean by saying that it feels like a whisper compared to what it felt like and I'm glad its almost gone for you..as the months go by its like its volume has turned down but its always there when I wake up in the morning, daily since Feb 2018.... thinking positive that this too shall pass..

      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