I'm finding things really hard at the moment. DH is increasingly tired - we don't know if this is from his long-term steroid use or from the brain lesions or from the inflammation around the lesions. Constantly adjusting various drugs to try to get an optimal effect.
In the meantime, other life crap just does not stop. Horrors include my job being seriously at risk; trying to sell a jointly-owned property long distance; and DSD who emigrated to the other side of the world with toddler DSGD just before lock-down, then broke her leg, and looks unable to be able to visit her dad before he dies. There are many more such things, and many minor one, like a broken loo seat I have been putting off replacing.
I mostly manage but I have been bursting into tears of frustration quite a lot, and keep having minor accidents and breakages which are clearly stress related. Still working online full time with hugely stressed and anxious colleagues.
I was prepared for the pre-emptive grief and the sense of loss, but not the endless difficult petty stresses and exhaustion (I'm still not recovered entirely from covid and keep having flare-ups months later), or the fact that more bad things will keep happening and the universe never says 'that's enough'. I just don't know how much more I'm supposed to be able to bear.
Friends have been very supportive, but lots are now coming out of lock-down and don't understand why I won't agree to meet them in person. I keep being lectured about how I must take time for myself. They all seem to think that my meeting them is just the tonic I need, and can't understand why we are still shielding. Basically, all I can do for DH is make sure he gets to die at home rather than in hospital alone, so this is what we feel we need to do.