18months in.....

Posted , 5 users are following.

Hi all,

im 18 months in and recovered loads by the year mark. I would say from January I'm nearly normal but these last two weeks have been a bit hard... Just feel breathless and exhausted sometimes...I know I do a lot and doing so much better this year, but it's hard sometimes when it's been such a lot time, so wearing...I feel sometimes like I'll be stuck like this forever...in this yo yo state.

Rhonda, it gives me hope that you say you're back to normal, I am so so pleased for you, gives me the hope and reassurance I've lost a bit. 

😊

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20 Replies

  • Posted

    Hi Caroline! I’ve been thinking of you. It’s so so good to hear youve improved the second year in. Although it sounds frustrating to not be 100% all the time. Are you able to exercise yet? 

    I’m almost at 11 months and have been in a downturn. Light headed again and stomach upset. Weakness and fatigue. It feels like I’m right back where I started.  Sigh. So ready for this to lift! 

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    • Posted

      Hi Lisa,

      i walk the dog most days and I occasionally go swimming but I haven't attended any classes yet. When I did go swimming I did 1/2 a mile and then felt exhausted, maybe I'm expecting too much! I go shopping and do housework in the day but some days are just more struggly at the minute than others. Get despondent quickly!!

      yes, it does feel like back to where you have started when symptoms creep back in.

      i hope it's gone for good real soon

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    • Posted

      Hey Lisa,

      As mentioned in message to Caroline there remember these downturns do pass over - it's scary when they happen I know, and my experience was that Year 2 was so much easier to deal with than Year 1. Hoping and praying for this setback to pass over and for things to settle down - and remember it takes time sometimes after that stage you feel maybe back to a certain level, 60 or 70% and think that's as good as you are going to get because it sticks there for a while and dips back and forth - but that's normal Lisa and you still do keep improving into Year 2 until you reach 100% again - I truly believe that you will get there and fully recover, hang in there!

      Craig

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    • Posted

      Thank you Craig!! Just gotta keep telling myself that! And luckily I haven’t suffered from brain fog since that initial 2 months so I can write and read and do things to intellectually keep me busy. Even if my body isn’t ready yet. 

      Hope you are doing a bit better. 

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    • Posted

      Thanks Lisa, really appreciate that. Glad to hear that the brain fog has settled, that must be such a relief for sure, it's so frustrating when progress seems so slow and drawn out though. But remember you definitely will get there to a stage where you feel fully well and recovered again - absolutely I believe that thanks to God Lisa, hang in there and thinking about you still!!

      Craig

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  • Posted

    Hi Caroline,

    It can be so frustrating when you feel like you've made real progress and are really getting there and then get hit with a bit of a setback. Really want to reassure that this is normal inside that first 2 years for sure, I remember after about 21 months I think having a mini-crash for 2-3 weeks and blood test actually showed EBV active again which scared me so much - I thought I was going to have to go through all that again. But thanks to God I didn't and the virus can't hit you in any way as hard as it did when first infected, and these mini-lapses can feel intense but generally find they don't last anywhere near as long and you get back on track much quicker.

    After the second year Caroline I found mostly I was able to live normal and healthy without these kind of lapses, so remember these will get less and less until they don't happen at all. And that progress you've made is still there it's not lost by a setback like this, truly you will get back on track again but the fragile state the virus leaves you in makes you worry when any kind of similar symptom comes again I know, it's not easy.

    Hoping things are much more settled soon and remember just take things easy at this time when feeling not as great, and remember it will pass and you still are on the road to full recovery - I truly truly believe that Caroline and you have been such an amazing support to me and everyone here on the site, if anyone deserves to be well again it's you!

    Craig

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    • Posted

      Hi Craig,

      thank you so so much for replying to me and assuring me again. I am always looking for that reassurance. I sort of know the virus is going slowly but sometimes doubts creep in, and I wonder if it'll ever end, especially when I'm feeling low. I appreciate your words so much and now I'll try not to worry. For anybody reading this year two is so much better than year one.like Craig says.... So I can't wait for year three!!!!😀 

      Caroline X 

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    • Posted

      It's totally understandable Caroline it took a long time for me to feel confident in how I felt physically after going through the virus, it's just a time process and that confidence will come back as your body resilience returns! Things going to keep getting better and better for you!

      Craig

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    • Posted

      Hi Craig,

      Thank you. It's nice to know or for someone else to tell me that this will go, and slowly fade away.... I know generally I'm really positive but even us positives need telling!!!

      hows you? How's your back?

       

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    • Posted

      Hi Caroline,

      I am the same it helps me so much to have reassurance and encouragement from others, I think I've been seeking it too much lately and as you say it's important to try and stand strong with a good attitude. It's hard at times though that's for sure.

      I'm still having problems with my back and prostate, I'm lucky too it could be worse I know but just finding it tough to overcome these physical and mental and emotional barriers. I know you know what it's like Caroline, it's hard when we think things will go a certain way and recovery doesn't happen in the way or at the time we thought it would - just trying to remember that God works in ways higher than us and that we don't always understand but that He is a good God and is working for our recovery and for us - I truly believe that Caroline and know I for one need to be better at letting go and trusting Him fully with my problems - that's so important.

      Thanks again for all your kind words and support and hoping for a better and settled weekend for you smile

      Craig

       

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    • Posted

      Hi Craig,

      im nodding as I'm reading your words....I agree and thank you again for replying to me and wishing me well... Pain and difficulties of any sort are so miserable. 

      I truly hope things heal for you too. and things ease up. 

      Xx

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    • Posted

      Thanks Caroline I really appreciate your kind words and supports, it means a lot and just to know others are on your side and understand when things are not great is a blessing.

      Really hoping and praying for a settled upcoming period for us Caroline, you hang in there and hoping this setback you've had settles down and you can get back to feeling much better really soon!

      Craig

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  • Posted

    Caroline and Craig,

    I appreciate reading your encouraging on-going recovery stories as you are both still struggling with health issues.

    Caroline, I am in my 40's too and have been hit hard by this horrible virus along with the dengue virus which I caught through a mosquito in Jamaica when working there. I have had a crushing headache, dizziness and brain fog for 4 months solid and wonder if I will ever have the energy and mental sharpness to carry on with my active and productive life again. Your positive attitude and slow but clear recovery process gives me some hope. I do worry that my symptoms are somehow worse than others because they seem to be more neurological and now seemingly plateauing. Some of my more typical symptoms have dropped off, like swollen tonsils and glands (grateful for that) but others are just not not budging. My sleep is very slowly improving but I now need a nap in the afternoon if I walk to much, which I try to do to keep my body moving.

    If I had a crystal ball and knew that I was truly on the road to recovery even if it takes 2 years, I would be grateful and plan my life accordingly. These viruses really play mental tricks on us....I am trying very hard to stay positive, but I need to learn from both of you to keep the spirit up!

    Take care,

    KIki x

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    • Posted

      Hey Kiki,

      I totally understand if you knew that things would get better even if it did take longer than you'd hoped it would be a relief, I do still fully believe you will get better Kiki. I'm the same with my issues at the moment if I knew things would get better and it was just a matter of time it would help so much, but not knowing or feeling that way makes it so hard.

      Thinking about you still and still believing God will bring healing.

      Craig

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    • Posted

      Hi Kiki,

      oh definitely there is hope.... I have lots of really normal days now..... After the year mark things really do improve but I really do agree with you, if you knew when it would go you could almost relax and just not worry as much. But it does definitely go, it really will slowly.

      thanks for replying in this thread.

      caroline

      x

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    • Posted

      Thank you for your encouragement Craig. When you went through this virus, were you so exhausted? It seems as though I have entered a phase where I am more tired than I have been in 4 months. I read about other people being so tired but I just can't believe this is still crushing me so severely 4 months into this.....It must be hard for you to remember as it was so long ago now but maybe you know of others being in my state and at this point in the recovery process. 

      I hope you are keeping your spirits up about your back issues. I can relate to those too!......wishing us both the return to a level of health that we can be truly thankful for. 

      Kiki

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    • Posted

      Hi Kiki,

      Yes I was exhausted throughout the course of the virus, especially the first 6 months in which I was really bad and the low grade fever just seemed to drain me all the time. Just want to reassure this is normal and just really hoping and praying things get better soon. Hang in there.

      Craig

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    • Posted

      Hi Caroline,

      Thank you for the encouragement. It is so good to hear that you have a lot of normal days now - that gives me hope to hear that. Besides the exhaustion, my issues are related to my cranial nerves. It is so hard to get information on the 'why'.....is it the virus still active (even though my igM is negative) or is it somekind of immune response. Did you have any nerve-related symptoms like pins and needles, headache....?)  I just want it all to go away - I loved my old life.....please come back!

      Keep up the great attitude and healing. 

      Take care 

      Kiki x

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    • Posted

      Hello Kiki,

      If I remember right I think I had some of the pins and needles and twitching and things in different parts of my body, actually strangely enough I remember for some reason a twitching of my eyelid, which didn't bother me but kind of sticks in my mind for some reason.

      Hoping this all settles down and remember you are going to get through this still truly believing that! Yes I know what you mean about wanting your old life back, it's so hard I know, I've been feeling that way lately too and it's not easy, just need to trust that God has good plans and purposes ahead for us and even if we can't see the reason for this hard time now, God works for our good and is up to something positive in our lives for the longer term!

      Craig

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    • Posted

      Hey Kiki, 

      Just wanted to let you know it is normal to still feel very tired after 4 months, I am right at the start of my 5th month, and at 3 1/2 months, I got this MASSIVE setback, where I am feeling like I’m just back to the beginning, this is the 6th week of the setback, and I am feeling as it’s getting worse and worse and not better.

               But before this setback, I was able to go outside and shoot my basketball, but I had to make sure I didn’t run or do much jumping as too much would make me feel worse immediately, but I wasn’t close to normal as I couldn’t run or anything without feeling much worse. 

               But even after all that improvement I still had this massive setback which seems like it just won’t settle and it feels like it is just getting worse and not getting better. 

               So with my experience I think that what you are going through is completely normal. Also my virus is still active, I think it is normal. 

               But I am glad you are thinking positively about it, that will help a lot, for me I is litterally impossible to think on the bright side haha. 

             My best wishes to you!

      -Youngboy

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