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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.
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