I’m happy to record that there have been no fresh acute health traumas arising in 2016, thank goodness, although, following on from my 2015 experiences, I remained pretty much bed-bound until April-May of 2016. Not fun. For me or those caring for me.
The good news is that my wounds healed, my infections abated, eventually, but I am in no way back to my pre-2015 level of robustness. As I write this today, in February 2017, I am temporarily bed-bound again after getting up for eight days in a row for about six hours each day. A small skin breakdown has quickly healed with bed-rest but without, it just gets worse and I cannot risk open wound infection.
The medics did warn me about pushing myself – gods, eye-roll, chance would be a fine thing – as my skin will never be as robust as it was but, grr, it’s frustrating. However, we keep pushing forward.
The consequence of these ongoing problems is that D and me are neither able to return to our previous routines nor establish new ones, much to everyone’s irritation.
We are living in 2015 chaos. D is still working from home, being sole Carer due to the unpredictability of my care needs. Home help and therapists come on an essential needs basis only. We are struggling to keep all the balls rolling here especially with external essentials demanding attention – like work and family issues.
To make our lives better, we need to do a number of things, none of which we have time to do. It’s a vicious circle and, in many ways, no different to everyone else but in crucial ways very different because it literally is about life and death with every decision, it seems.
Overlaying all of this acute chaos, I continue to suffer the usual illness relapses and 2016 has been a bad year for those. This year, I’ve had some strange new symptoms affecting my eyes and hands. My consultant says that my illness is now attacking my cerebral cortex which sounds kinda scary. At the first pass, these symptoms have not responded to my usual steroid treatment.
As ever, no point panicking. I’ve occasionally had persistent symptoms previously that took a few treatments to go into remission. So, I’m happy to wait and see what happens next time.
‘My consultant is less happy and continues to press me towards stronger medication which, essentially, means I would feel ill all the time – kind of permanent chemo, lower doses but long term. These drugs won’t improve my symptoms but, he hopes, they’ll make my relapses less frequent.
I do not see this drug regime adding to my quality of life. Should this next year see more deterioration, I may be forced to reconsider this view but that’s a 2017 problem so I shall not worry about it now.
And that’s it. No skin cancer this year. Yay.
Despite, or maybe because of, the recent health traumas I have had, I do find myself enjoying being alive more than usual.
In Spring 2016, in a John Lewis cafe, on a bright sunny day, I was so happy just to be alive, outside, laughing with D. I actually cried with the pleasure of it.
This past week, D and me went across to a local shopping centre. On the way over, it was raining, we were listening to music, laughing and the joy and gratitude I felt to be there, in the moment, was overwhelming.
I felt so lucky to be alive, to be loved and to love. I’d like to say thank you to all my friends, family and most of all …
To D: for all those moments when you make my life worth living. So many. So often. My love runs deep ♥️🖤