Note to my partner & carer:
'I am experiencing insufferable pain right now. The constant pulsing, infernal razorblades dancing up and down my face, cutting into my jaw and cheek and tongue and up in rabid darts to my poor, poor temples; the raging fire that engulfs the whole left side of my face and the evil persistence of it all, means that I cannot and do not want to move or speak as that will make it worse.
I do not want to be touched except with one STILL calming hand somewhere far away from my face, head and shoulders.
I cannot feed the baby on my left side and want her exploring hands and bullish head nowhere near my left side and face. If she NEEDS to feed, I can suffer her on my right side only, if she remains relatively still.
The pain is going on for ages, 30-60 minutes, so even though I may have stopped screaming, swearing or crying, please know that unless I move myself, it is ongoing and I do not want the covers or pillows or anything around me moved.
I know this is difficult for you and the baby but there is nothing I can do about that right now.
I am struggling to cope and too often think about how I might end it all. This is insufferable. unbearable and I am losing hope that I can be healed or heal myself. I feel as though the universe is against me, holding me here like some god-forsaken lab rat, injecting me with more and more pain. I cannot believe how harsh it is and that it keeps getting more so, instead of easing off.
I honestly don't know how I'm supposed to cope with it and still live a life worth living. I don't know how anyone is supposed to deal with this level of pain.
All I can do, all I feel I can do right now is try to breathe through it and make what I can of the precious little time in between. If this makes me less of a partner and parent, I am deeply sorry for that, but this is all I can do at the moment. There's the arthritic pain underneath as well but right now I can't focus on that much.
I have asked so much of you already, I know, but the following things might help to at least make life easier in the short term:
- an armchair for the bedroom and another for the living area so I can spend less time in bed and feel a little more able to move around the flat
- an insulated mug so I can drink my teas and stop wasting them or asking for so many refills
I may have to get myself a walking stick too as I need to be able to move around easier. It'll be sad but I have to face up to how things are now, not how I hope they'll be in the future.
Thanks for reading and for all your support. I know it's incredibly hard for you too and I truly appreciate all you do x'
