Hello PainPals! I did start an Inspiring Blogs for you last week, but life seemed to get in the way. This leaves a couple of weeks in the PainPals house to catch up on, yet the brain fog is leaving me struggling to remember what happened yesterday let alone last week – but I will try.
When chronic illness (CI) slowly creeps up on you, often the “patient” and the “nearest and dearest” don’t notice how life has changed because we are all too busy living it. A couple of weeks back I was very proud that I managed to successfully make a 50th birthday cake for a friend’s Silver and Gold party. The cake took all week as I painstakingly cut out icing stars, painted them, baked the cake, iced the cake – taught hubby how to ice the cake! – and decorated it. I am so slow now as my hand frequently spasms (when painting on hundreds of gold “stars”) and the dislocated right arm is not conducive to handling a heavy icing rolling pin! But I did it.
The next challenge was to get to the actual party. Before CI, dressing up in silver and gold sparkles and spending my night on the dance floor being the dancing queen would have been a great night out. With CI it can be a struggle to actually get out in the evening before fatigue sets in, but an extra strength is needed to overcome not just the physical limitations but the psychological ones too. Before I could get through the door of the party venue in my electric wheelchair, I had to break through the barriers that my own brain was throwing up as I came to terms with no longer being an able bodied dancing queen. The words drowning queen often spring to mind as the body won’t behave in the way that the head wants it to. I still struggle, yet live this daily – and it soon became clear that it wasn’t just me having to come to terms with these changes.
Several different friends asked if I had seen another lady – a mum from the primary school, where we all used to meet at the school gates when our now young adults were little. The interest here was that she was walking with a stick and “something” had happened to her – they wondered if I knew what? I didn’t know, but immediately recognised that there would be people looking at me in the same light “last time we saw Claire she was up and mobile – for some it would have even been pre walking stick – what has happened that she is in now in a wheelchair?” But for anyone who hasn’t witnessed that event or that general decline, so often they feel they can’t ask.
When this other lovely mum and I “bumped” into each other at the edge of the dance floor, I think that we immediately recognised kindred spirits and were also not afraid to ask “what happened?”. She told me that she had suffered a stroke in her forties, I told her about my back surgeries and downward spiral with Ehlers Danlos Syndrome and chronic pain. We discussed wheelchairs! When I later said to my friends that others (who hadn’t been with me over the last 10 years) would be wondering about me in the same way that my pals had mentioned the other lovely mum, at first they were taken aback and then realised this was true. People who were not in the know were not “gossiping” about us, but rather were surprised to see such a huge change and I think this makes us think of our own frailties and indeed mortality. But I can assure you – a good time was had by all!
There has been a momentous event in the household – the young engineer has moved out! Hang out the bunting, change the locks……no, only kidding but I have to say that the household has used far less pasta and tuna in the weeks that he has been gone. He has moved with a couple of friends into a swanky pad alongside the Queen Elizabeth park – home of the 2012 Olympics – in east London. I did remind him that the new bedding would not only have to be put on the bed but also taken off the bed and put in the washing machine…..that gizmo sitting in the corner of the bright white new kitchen. I wonder how long it will stay looking that way?! This place is so smart that there is even a posh onsite gym for residents! I am happy to report that he has not returned to the wrong address – at least not to this one, his better half may beg to differ! Hubby and I have been sure to book our Christmas dinner at his place (we might be treated to tuna pasta).
The weather in the UK has been truly wet over the last fast weeks and with the changing of the clocks winter is arriving. I have been reading some great wintery posts over the last few weeks so thought that I would share some before we enter December. So sit back with a cup/glass of something delicious and enjoy!
Thank you for reading and please share/like/comment on the posts that you enjoy.
Have a great weekend,