18 months and feeling good

Posted , 9 users are following.

I hope everyone had a restful Christmas and that the start of 2019 also brings renewed hope for recovery, after a very tough 2018. Over the past week I’ve had some time to reflect on how far I’ve come since being diagnosed in September 2017. Other than only currently working 15 hours a week (I am purposefully taking my time getting back into fulltime work), I would say that the past six weeks I have been leading a pretty normal life again. I even ‘forgot’ that I was recovering from illness while catching up with lots of friends over Christmas, enjoying a six hour bbq in the park with a big group of friends, spending a busy Christmas with family and then this weekend having another friend stay and doing two big full day trips to the beach together.

After spending such a long time restricted, both due to not feeling good and also pacing myself ‘just in case’ it cases a crash after or CFS, it was such a wonderful luxury to just forget all that for a while and live the life of a healthy person again. For the past six weeks I’ve had no repercussions or ‘crashes’ after actually doing things again, and it feels fantastic.

I have noticed one persistent symptom lingering, but fortunately it’s one that I feel I can learn to conquer. After spending such a long time second guessing my physical abilities and telling myself ‘you’re still sick, you’re not capable of that yet, you’ll cause a crash or will get CFS if you do too much’, I found myself suffering a lot of anxiety when faced with situations where lots of energy might be involved, not necessarily just physical energy but also mental and social energy too.

At the beginning of December I had a close friend’s wedding in a city two hours flight away, and I became very physically anxious that I would be overdoing it, and would be doing myself harm by spending a whole weekend away from home, socialising, not sleeping as much and eating unhealthy food. If it wasn’t for the fact that she was a really close friend, I would have just not gone along, but I felt I really should go, especially since it was such a small wedding with only a few guests invited.

Despite it being a really massive weekend with hours of travel, hardly any sleep due to a really loud hotel and me being on the verge of a panic attack the entire time anticipating a huge health crash, I didn’t have a crash, and I felt wonderful when I woke up at home on the Monday morning. I was even able to go to work that Monday morning, and do all my shifts that week. I was so shocked and incredulous that I felt so good after ‘overdoing it’ so much.

In hindsight, that weekend away was a really important turning point for me. Yes, there is a time (an incredibly long, frustrating but very important time) that you must ensure that you don’t do anything except rest in order to heal. For me, that period was probably a good 14 months long. But you must also recognise that your body is slowly healing, and that eventually it will be time to once again build yourself up, start slowly exercising, start socialising and start ‘rebooting’ life again. This virus not only brought me to my knees physically, but it also caused me to seriously lose faith and confidence in my own body, and develop anxiety about my own abilities. Things that have really helped me build up again over the past four or so months include increasing my physical exercise (mainly walking 4km a day when I can), really increasing my consumption of protein to rebuild strength and muscles that had long wasted away and having a good protein powder everyday (as recommended by my naturopath), reconnecting with good friends and slowly but consciously building up the amount of things I take on, to ensure I don’t get stuck in ‘sick mode’. I hope me sharing my experience is useful to someone and keep faith that you will get better. It just takes (a lot of) time.

2 likes, 24 replies

Report / Delete

24 Replies

Next
  • Posted

    hello!

    great post, thanks for coming back and updating us all. when we feel good its so easy to never want to dwell on such an awful time. so happy you are feeling great and enjoying life again!

    i am about 13 months in since the beginning of the worst of it all... I also feel good nowadays though if i stress mentally or dont take care to get my sleep i start to feel achey and just a little weaker.. it is 90% better than it was a year ago! recovery is so so slow and gradual but it happens, for some it takes 6 months for others 12, some 24.. but this will NOT be permanent 😃 one day at a time we are all a day closer to feeling like our old selves.

    Report / Delete Reply
    • Posted

      Hi Van, i'm so happy to hear that you're feeling better these days, when the clouds finally part and life starts to feel semi normal again it's just the best feeling! Hoping that you keep feeling better and better and that soon the past 13 months are just a bad memory in the past. 😃

      Report / Delete Reply
  • Posted

    That so cool your are back to good health , what an amazing feeling that must be . Thank you very much for spending the time to post your story , give me hope that I need in a bad way . 11 months for me now and I'm still on the zig zag roller coaster ride . Good hours and some good days here and there. I can't wait for the day I can post a story like your .

    Thanks Again , Hope you continue with good health .......

    Report / Delete Reply
    • Posted

      Wishing you David and Van a Happy New Year when it comes too and just hoping for a year of peace and recovery and prosperity ahead for you after everything you have been through this year. It is going to be a year of hope and recovery for us all on the forum thanks to God - I truly believe that!

      Craig

      Report / Delete Reply
    • Posted

      Hi David, thank you for your reply and I hope the past few days have been good days, rather than bad for you. I remember being at 11 months and still feeling very dizzy, fatigued and not confident at all that I was actually going to get better. But here I am, a few more months down the track and things have really turned around. I'm sure the same will happen for you too and I look forward to reading your recovery story on here one day too! Just keep resting and listening to your body- i do not regret one single day of rest now, however frustrating it seemed at the time to still be doing nothing. Wishing you a 2019 filled with many good health days.

      Report / Delete Reply
    • Posted

      HI , Thank you for the nice reply . Gives me some hope . I read the posts on here about people fighting this horrible virus for long times like 18 months or 2 years . I can not imagine that . One day is to long for this nightmare . All the weird symptoms that come along with the crap is crazy . Staying mentally strong after one year of this has put me at times almost over board . Its so nice to hear a positive story like yours . Thanks again and hoping you stay healthy , because health is wealth .

      Report / Delete Reply
    • Posted

      You're so right David, just getting through one day with this thing can be so draining, wearying and hard. It's not always possible to stay mentally strong and feel so optimistic all the time when going through it, so don't beat yourself up about that, just remember to be understanding to yourself, that you've been through such a tough year but that you got through that year and praying God willing you won't have to go through anything as intense as that again.

      Absolutely your health is your wealth David, tough times with mono and pain and things like that make you realise that more than ever. But you are going to get there David, I still believe this is going to be a much better year for you and one where recovery really starts to manifest in your life - so hang in there and just continue to take things at a pace that's right for you right now, don't push yourself too hard or expect too much of yourself, and remember you will get back to full health again - truly I believe that.

      Craig

      Report / Delete Reply
    • Posted

      Hi David,

      One of the hardest things of this virus is when things don't seem to change or move at all over a period of time, I remember how discouraged and distressed that made me feel David just not knowing how to move forward with everything, and just praying to God was important to me and just so grateful for His mercy and bringing me through that time.

      I've learned through reading so many people's posts David and my own experience too that it's not uncommon for the major change to come in the second year of this virus David, and remember a real breakthrough can come in a short space of time too even after feeling 'stuck' at the same level for a long time before that, this definitely seems to be something that can happen with this virus.

      I remember reading somewhere, and I have no idea if it's true or not as my medical knowledge on these things is virtually zero, a reason that kind of made sense to me why a big change can happen in such a short space of time with this virus. Bear with me and I'll try and explain!

      If you imagine a more regular virus, like a normal cold for example, being a shape, say a square - your body then makes antibodies to block the square shape and once it's done that after a few days / week or so then it is able to nullify the virus. The thing I read explained the longevity of the EBV virus, in that if you imagine that if the mono virus is a square shape, your body then makes the antibodies against a square shape, but by the time it's done that the virus has changed shapes to a triangle, and then it goes through the process again makes antibodies for a triangle but by the time they're made it's changed to another shape, and so on. BUT the thing that gives hope with this virus is that it trips itself up somewhere down the line by changing shape back to one of its previous shapes, so after a while it might change back to a square and by that time the antibodies are already previously made for that and it can finally nullify the virus and kick it into touch!

      Again I don't know if that's true or not but it made sense to me when I read it a while ago, I can't even remember where I read it. But it can explain how that some people can struggle with this virus for a long time, a year or a bit longer, but then really start to feel better pretty in quite a short space of time.

      Anyway sorry for the protracted explanation David, just thought I would share as it popped into my head! Key thing to remember is that whatever the recovery process of the body is, that you WILL recover - I still believe that this is going to be a year of breakthrough for you and one that gets better as it goes on - even if it hasn't started great don't lose hope or heart David, because a change IS on its way - trusting God with that. Thinking about you still and hoping for a good and settled week and period ahead, hang in there you've come a long way and remember again that Year 2 of this thing can be SO much better than Year 1, as was my experience.

      Craig

      Report / Delete Reply
    • Posted

      Craig , Thanks for the positive words and your time . Much appreciate , your a big help to all of us on here . How are you doing with your back problem ? I'm about a week away from the one year mark of when i started getting dizzy . About 10 months sense it peaked . I hope your right about the second year , its been a struggle no doubt about it .

      Dave

      Report / Delete Reply
    • Posted

      Hey Dave,

      Thanks for thinking about you and asking about how I am doing, I do really appreciate it. I have had a bit more settled period this last couple of months with my back thanks to God only but still working through things and hoping and praying things can improve and I really can make progress with this over the coming period as it would mean so much and I so much don't want to go back the way with things. I'm really still having to take things a day at a time and not look too far ahead with things.

      I am definitely believing that Year 2 is going to be a much better one for you, God willing I hope you never have to face anything as intense or awful as this last year again Dave. You have done amazingly well to hang in there and get through that time, and you're an overcomer thanks to God so I'm truly believing and praying that better times are ahead for you.

      Thanks again for the encouragement, that has lifted my spirit and grateful for all the kindness of you and everyone on the forum!

      Craig

      Report / Delete Reply
  • Posted

    Hi KS,

    That was a great post, there is such wisdom in what you have wrote and a lot that others going through a really hard time with the virus right now can draw on for hope and advice absolutely! It really is great that you have been feeling a good bit better this last 6 weeks or so, and a tremendous achievement that you have been working 15 hours and that you made it to your friend's wedding in December. To go through with that even though you were wholly unsure how it would make you feel was an achievement in itself, and definitely there is great confidence to be taken that your body handled such a busy and stressful activity well - it is a real sign that recovery is happening and that your body really is starting to get on top of the virus, I definitely believe that.

    I totally get what you are saying about losing confidence in your body's ability to cope with more activity or stressful situations, I felt exactly the same during the virus but your body resilience does amazingly return with time, and it does take time for your confidence and everything to rebuild and for the anxiety to lessen but you really have been doing all the right things to help yourself and taking the right approach in attitude, actions, rest, seeing friends, etc.

    Hoping that things can continue to be settled and for further improvement into the New Year KS, my experience during recovery was that your body does continue to get stronger as time goes on, and not to panic if there are some minor bumps / down days along the way because they are temporary and become less and less as time goes on.

    Wishing you a Happy New Year when it comes and hoping for good health, peace and continued progress in 2019 - and well done on the excellent progress you have made recently you have shown great courage and determination without doubt!

    Craig

    Report / Delete Reply
    • Posted

      hi Craig, thank you so much for your wonderful words, as always you are such a source of wisdom and inspiration! I hope you had a settled Christmas and new year, and that 2019 brings new opportunities and improved health for you. Chronic illness and pain of any sort can really change you, both physically and mentally and it can really derail your self confidence. I think it's so wonderful that we are part of such a supportive network on here and can all share our fears and triumphs, and help each other.

      Thank you for your continued presence on here and for all the hope you share. It has helped me so much over the past year and a half.

      Report / Delete Reply
    • Posted

      I totally agree KS this is a great and supportive network, and I'm grateful to be part of it too.

      I did have a nice Christmas period thanks and grateful for that. Have been finding this week a bit harder and the reality of some of my health and work circumstances hitting home a bit again after a bit of welcome distraction from it. Just hoping somehow can find a way to breakthrough some of the things that have been going on in my life this year, my confidence and hope and attitude have all taken a bit of a hit and really praying for God's help to find my way again and get back on track.

      Thanks again for all your kind and encouraging words KS, it means a lot especially on days like this when finding things a bit harder. Still thinking about you and rooting for you too and believing this is going to be a great year of healing, hope and peace for you.

      Craig

      Report / Delete Reply
  • Posted

    Thank you for your post. It gives me hope.

    Report / Delete Reply
    • Posted

      Hi Brent

      Thank you for your reply - i understand all too well that hope can be so precious when faced with a chronic illness so I am so happy that my post can help give you hope. I found over the past 18 months that it was easy to get trapped in the expectation that my recovery would be the same, or even quicker than other people on here, but if anything I found that my recovery was probably a bit slower, despite the fact that I probably rested even more than most people on here from what I've read. I took a whole ten months off work, and didnt' do a single chore at home for at least six months, I was taking crazy expensive immune boosting herbs the entire time and was eating a really strict healthy diet, but my turning point didn't happen till at least 11 months, and it's only been in the last six weeks that i've felt anything close to normal. My point is, we're all different, have our own challenges in amongst recovering from this awful virus, and so each of our recovery stories and times will vary. You have very good reason to feel hopeful because you will make a full recovery too, in your own time.

      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