18 months and feeling good

Ears, nose and throat
1

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

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.

3

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 .......

4

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

5

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

6

Thank you for your post. It gives me hope.

7

hi KS

thankyou for your inspiring post, it gives me hope. your story is simiular to mine but a few months ahead. working low hrs must be a god send whilst recovering.

what have you been doing in your spare time? other than working im lost as to what to do with the extra time down time whilst recovering. prior to being ill i would be doing something physical like walking or working out, so not being able to do this for so long has left me feeling abit lost.

i can totally relate to the anxiety around 'energy draining' activities. personally i cannot bring myself to go anywhere on my own anymore, or drive for more than 10mins. hoping we can both work on anxiety this year. wishing you further healing and hope foe the future

8

Hi Ks,

Glad to hear you are getting back on track.

Its been 6 months since that fateful day where I did a 25km - 6 hour trek. I am doing much better every month although not 100% recovered. Just to summarize my case, It all started with fatigue, slight fever and 4 weeks of terrible gas/ bloating. I never had sore throat or swollen glands which seems to be common in older adults. I suddenly seemed to recover during the last week of June then I over did it by going to a very strenuous trek. Blood tests in July confirmed Recent active EBV infection. July and August were the worst two months of my life. I seemed to improve in September but had a setback with food poisoning (my bad ate lot of street food) which put the recovery on hold for a month. After this I also developed dizziness/nausea which was never there before. Fortunately now the dizziness has gone for last couple of months.

Coming to my current status. I work full time although desk job. I feel 90-95% recovered most of the time. The problem I currently face is dull upper body aches on and off, mostly lower back and neck. Apart from that my energy levels are much better compared to initial awful two months. I have not started any sport or running yet. But I walk 5-7 km daily on an average. Hoping will get back to normal in few more months.

I have a question, did anyone experienced reduced libido during/after recovery?

9

Hi guys,

I'm hoping so much Sweebee this can be a year of recovery and healing for you, and that with time your confidence can return and the anxiety can disappear, it's such an awful thing. I struggle too with the time on my hands and motivating myself to do things, my back has been bothering me and it gets me so down still, had a good Christmas period was feeling more settled but finding it harder again now and just so much want to be fit and well again and to be able to work again and have the confidence to get up and go out and do something productive in work type setting without fearing or worrying about my back or any other health issues. I know you know what it's like too and I worry that it's my attitude or that I'm not fully letting God help me or I'm doing something wrong as struggling to see progress at times.

Sorry for being so down at the start of a New Year, just a little frustrated and so much want to find a way forward but don't know what direction to step sometimes. I'm still believing we will get there Sweebee and God is going to get us through things, praying He gives us the faith and the courage and the strength to keep trying and to seek Him and listen to Him and not to give up. Still thinking about you and rooting for you and message any time of course.

R20 very much hoping for continued progress and healing for you too, glad you are feeling a good bit better and remember your body will continue to get stronger with absolutely hoping and praying that you are on the road to full recovery now.

All we can all do is just continue to take things each day at a time, I know that's all I've been able to do anyway and not look too far ahead and just keep hoping and trusting in God and holding onto that as tightly as we can.

Craig

10

Hi there, definitely reduced libido on my part. I am still recovering - almost 17 months in. Hopefully is just short term.

11

Thanks for sharing this KS. Great to hear your are doing so well. I am almost 17 mos in and I still have some bad days here and there but definitely have come a long way in comparison to where I was 12 mos ago. I would say I have a mini crash at least once a week but it doesn't usually last more than a day or so at a time these days. For me, stress, lack of sleep, and eating certain foods are definitely my triggers.

Long may you continue to feel wonderful :-)

12

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. :)

13

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.

14

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.

15

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.

16

Hi Sweebee, Thank you for your reply. I hope that your Christmas and new year was restful and that you've had some good days recently. The anxiety in relation to this virus is just awful because in the beginning it's a direct symptom of the virus attacking the nervous system, but then it seems that the body adjusts to a new anxious state, based on the experience it's had from going through the virus - this has been my experience. I'm sorry to hear that you're struggling with driving - I know what that feels like. In the beginning I couldn't even be in a car being driven by someone else without getting claustrophobic and panicked. In terms of keeping busy I learnt to crochet a few years ago and so I crocheted a big queen sized bed blanket while i was sick, and i also started drawing again as someone introduced me to a website where you can upload and sell your art. I also watched a LOT of tv and read some books about people going through chronic illness like lyme disease. If there's something you've been meaning to try like learning a new language, or meditating, or crocheting just get on youtube, it's amazing what's available. Thank you for your well wishes and I also hope that you make a speedy recovery and that 2019 is your year.

17

Hi kaymono, i'm so happy to hear that you're feeling a lot better than you were- I found that any improvement was just so heartening, even if it's not back to 100% quite yet. It's good that you can recognise your triggers as I find that really helps with managing crashes and bad days. Thank you for your wishes and I really believe that 2019 is our year to get 100% again!

18

Hi r20213, thank you for sharing your story with me, it sounds like you're been through a really tough few months with this mono, it's just such an awful virus and thing to have to go through. It sounds like you've been making some really positive progress and it's wonderful to hear that you're working again and feeling 95% better. I really hope that you continue to feel great and make a full recovery very soon! I don't think i noticed a change in my libido although when i was completely exhausted it was definitely the last thing on my mind!

19

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

20

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 .