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
Sweebee KS2017
Posted
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
KS2017 Sweebee
Posted
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.
r20213 KS2017
Posted
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?
craig07920 r20213
Posted
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
kaymono r20213
Posted
Hi there,
definitely reduced libido on my part. I am still recovering - almost 17 months in. Hopefully is just short term.
KS2017 r20213
Posted
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!
kaymono KS2017
Posted
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 😃
KS2017 kaymono
Posted
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!