As I've often said, things happen for a reason - good or bad. We may not always know what that reason is but in order to get by we must trust in the bigger picture, just release control and any preconceptions we may have and go with the proverbial flow. I strongly believe this. Take this weekend for example, my best friend and I should have been wandering around the historical streets of Krakow and paying our respects at Auschwitz, something that has long been on both our bucket lists and had been eagerly awaited for some time. However, the tour operator pulled our return flight last minute and all the alternatives offered didn't suit us and so sadly and very disappointedly we chose to cancel for the time being, all unfortunately out of our hands. Looking with hindsight at this now sat in my living room when I should be walking those wonderful cobbled streets in Poland, fate may very well have been on my side, my health as erratic as it is and following a tough and exhausting week decided to play up; both mentally and physically. With the best will in the world I would have truly struggled with the travelling and the walking, not to mention the mental effects of Auschwitz which I already knew was going to leave a lasting impression on my heart and head, I mean how could it not! We accepted it was not meant to be and this weekend seemed to tell me it may not have been a bad thing on this occasion.
Being the troopers we are though, when Poland cancelled on us we decided to have a day out in Chester instead, which quickly became an overnight stay with meal and another friend coming along for some middle aged, menopausal high jinx, happy days right...wrong 🤔 thus with hotel and train booked, by Friday my week had totally caught up with me pretty badly and I realised even this simpler plan was also out the window, all I needed was rest and solitude. Although feeling very guilty at cancelling yet another adventure at the last minute and leaving friends high and dry once again, I was quite relieved when I found that they decided to make the best of their weekend regardless of the last minute change of plan and spent it in Blackpool partying with another couple of friends and quite right too!
So come that Saturday night and I'm feeling rather woeful having sat all day feeling somewhat sorry for myself and I remember other plans I had been offered - another group of good friends had invited us to a little get together at theirs - nothing too taxing and always turn out to be quite fun and uplifting, previously due to the Krakow trip we couldn't make it but the thought occured to me that maybe it would be just what I need, BUT that would be a no - my body, mind and soul could manage nothing more than pjs and collapsing on the sofa at this point, C'est La vie!
Now however with a free weekend for all other social invites and chatting to another friend via text, and oh yes, I do realise that with so many special friends I am already very blessed, a fact which is never lost on me - we said that we would meet on Sunday, that is today just for a cuppa and chat to try and make up for the damp squid the weekend had become. A comfortable, friendly catch up with someone who had been there for me when my head was going into overdrive during the week. Guess what? yup that's right, nothing doing today either! This tired old body of mine couldn't even manage that - even the thought of the short drive was too much let alone the need to shower, change and engage. If it didn't involve pyjamas it simply wasn't happening. While my mind ie mental health had indeed grown stronger and clearer towards the end of the week with the resting and time out - my body, drive and motivation could not rise to the occasion no matter how much I wanted to. Hello cancellation number four (insert sad music!).
I reiterate as in previous blogs these insights are by no means poor me pity posts, it is what it is and like countless others for whatever reason similarly affected I have no choice but to live with it. I share to simply enlighten. Luckily, my amazing friends and family get this and they too accept it as well as the constant last minute change of plans which are now part of life with me. I suppose the reason I need to share is because of my own guilt - for in my mind constantly letting people down and for when I do manage to have a good time - I know the contradiction and erraticness of it confuses people. The times I do manage to get away and do amazing things and not only do them but do them with style, putting my heart and soul into them and have the time of my life with people who matter I am in no doubt that looking from the outside in, the good time pics of a healthy looking me on social media or happy chats when we do manage to catch up are at odds with the regular narrative I share both privately and publicly. But this is the heart wrenching thing! for every Isle of White festival I am able to attend, every holiday, every concert and fun day out enjoyed - there are numerous unspoken, unseen cancellations of simple catch ups and cups of coffee, days out, parties, breaks away and so much more.
It all just goes to show that you should never assume; never judge that the person who just parked in the disabled space then strolled into the store with no apparent disability MUST be faking it. Remember not all disabilities are visible and as is often the case with chronic illness no two days are the same. You only see a small proportion of any ones life on social media, in a car park, at the store, walking along a street...or even that time you caught them running for the bus for that matter.....accept it for what it is, a good day and please, just be glad for them! So to anyone struggling with this either from the outside looking in and trying to understand or if you are in fact the one experiencing this roller coaster, I share with you a mantra I created which I remind myself over and over to get through the dips "Live on the days you can, rest on the days you can't and reminisce in the memories that you did it at all when the times get really hard" and I guess thinking of recent times, this can be applied to most people these days. For me personally trying to let go of the guilt is a work in progress but I continue to try. In the meantime just be you and let others be themselves, don't judge from knowing only a tiny portion of what their story is and please always, always be kind because speaking from experience I can guarantee that the majority of us are just winging it! X
