2020 has been a horrendously hard year for everyone. The PM briefing on Saturday was just the tip of the iceberg. Having been promised a Christmas with family was one thing, but it was nothing short of cruel to have all those plans scuppered less than a week before the day.
But this is not new for me or the millions of disabled people in the UK. My chronic illness has meant that I can never make solid plans. The M.E. Monster has dictated my life and all celebrations in it for years.
I’ve spent six Christmasses in the past fourteen years being in hospital and too ill to be able to spend much time with my family. I have been rushed into hospital on Christmas eve where I ended up having sixteen attempts at placing a catheter (that was definitely a different way of celebrating Christmas)!
In my life everything has consequences. Chronic illness fluctuates constantly. Nothing is ever secure. I’ve had to make decisions between eating food or managing to open a few presents with my loved ones. I didn’t have the energy for both.
It doesn’t just happen at Christmas either. Team Taylor were convinced that my body seemed to know when it was a celebration for things to go wrong; I was rushed in for emergency surgery on easter and spent multiple years not being able to do anything but lie in the quiet on my birthday.
It seems that 2020 is forcing everyone to experience a little bit of the isolation that I have suffered with for years. And yes it is crap. Really crap.
I understand how difficult it is to have to make these decisions but without much choice. I understand what it’s like to feel like you are being controlled by something much more powerful than you. I understand.
Whilst I would never wish this on anyone in the world, I really hope that you can begin to understand what my life – and so many others – face daily.
I want you to know that although this is seriously rubbish, it is temporary. There is light at the end of the tunnel. It will be okay and you will adapt.
Many of my chronically ill friends have brilliant ways of coping. We often make Christmas celebrations last weeks by doing small things everyday. I have spent days opening a small number of parcels rather than in one go.
It has even been known for us to celebrate Christmas in a completely different month, depending on if our health has forced us to “cancel” Christmas…
I have learnt to value every moment that I get to spend with my loved ones. I will never take that for granted and I hope that will now be the case for everyone. I just wish it didn’t take a pandemic for us to realise that.
Felicity playing with the Christmas tree
It’s very strange, my family were all so upset about the announcement and I actually took a deep breath and knew that my anxiety was then over, I knew that due to the new restrictions I had the ideal opportunity to make my family Christmas much simpler and I now stand the chance of not having the major crash I usually have after Christmas!
So true what you said. Being disabled and sick changes life. I find I have to look for the good and just tolerate the bad. Love you baby girl.