I’ve deliberately tried to keep my blog posts positive in order to provide some contrast to the vast majority of content or forums out there, but having been through probably my toughest period over the last month, I though it only right to shine a brighter light on three of the things that I’m finding most challenging and the lowest moments too, as I know they’re experienced by many. Most of these focus on my emotions or thoughts, which is probably the most difficult part for me, and something I am working to address in my recovery.
The unknown future
Due to the nature of the illness, the lack of universally agreed recovery method, the absence of positive stories, the relentless nature of the symptoms & how difficult progress seems to be – it does often feel like you’re never going to get better. The future feels unknown as a result, I wonder if I’ll ever get back to my normal life, if I’ll ever be able to socialise for significant periods, if I’ll ever be able to work and play sport like I used to, if I’ll ever feel freedom in what I do and if the relentless pain and discomfort will ever go away.
Despite feeling like you’re doing everything you can to recover – sustainable progress always seems difficult to find and everyday life factors whether work stress, relationship problems or other illness only seem to add to that struggle.
Even though I know and believe that recovery is achievable because I’ve done it before, and seen others do it – it still remains incredibly hard to keep faith and not visualize my life as it is today, never improving and all the implications of that for me, and my future. But I also know that trying to maintain belief and having a positive mindset is also key to recovery.
A lost identity
18 months ago, if someone asked me to describe myself – I’d likely include the following words – sport, exercise, socialising, consultant, travel etc. These are now all things that I’m hugely limited in my ability to do, and that leaves you feeling an identity crisis, because you can’t express yourself in the way you want to and the way that makes you happy and feel fulfilled. When you meet new people, your identity almost becomes the illness because you can’t talk to all the things you would really like to be doing, and so you talk to the cause of that loss instead.
As someone who has never enjoyed spending time on my own and has at times invasive thoughts, I’ve previously counteracted it with always keeping myself busy, surrounding myself with people, playing sport, working and doing things I enjoy.
M.E has stripped me of this ability and due to finding my cognitive functioning for socialising, working, watching tv and reading greatly reduced, I’m left with large chunks of empty time, where boredom and more importantly negative/invasive thoughts are left to work overtime! It is a pretty lonely and difficult place, and I say that from an extremely lucky position of having amazingly supportive friends and family around me.
My next post will be back to some more positive vibes, for my own benefit and others with a recovery story from a friend of mine, which is really inspiring. I’m also going to be trying out a few new things over the coming week so will report back on those too.