You look so well! Part two.
The point I was making in my last post is that many of my reactions are really difficult for other people. Do one thing and I hate it, do the opposite and I hate that too! Or, do a particular thing, and one day i like it and the next I don't. One friend asked me how to 'get it right', inviting me to say what would work best for me.
Sadly, I think it's impossible to "get it right". Luckily, I mostly just accept what people do and say because they are usually doing and saying things with the most beautiful intentions, and when they get it wrong, I take it in the spirit it's intended.
But okay, I'll give it a go to set out the ideal.
What should people ask you?
- how are you?
The important thing here is to help me understand how much detail you want. Like most very ill people, I am preoccupied with my body a lot of the time, because it's imposed on me. My whole day is centred around how much energy I have, my meds, my sleep schedule, my medical appointments, my side effects management and so on. It makes me far more self centred than I'd like, but I have no choice if I am to manage this effectively.
I will blather on for ages about it if you let me. But I recognise it's really boring for most everyone else. It's hard for me to judge how much to say. So normally, I begin with "Okay considering", or "Crap today", or whatever. Then if you want more detail, ask more. "How is your latest chemo going?" or "How are the side effects?" or whatever.
I will then give you a shortish summary and only go into detail if you again ask for more. I don't want to bore everyone I know with irrelevant details of my illness. On the other hand, some interest is good because it's what I'm living now.
How can people know what you need?
This is a good question. They can't. Sometimes I don't either. But the statement, "let me know if there's anything I can do", is a formula statement. Often made with genuine intent, but I can't tell the difference between that and the kind of statement people make when they say "let's do a coffee some time soon".
Sometimes that means we'll drink coffee in a coffee shop in the next few weeks and other times, it's just a way to end a conversation pleasantly with no real intent behind it. I've always been bad at telling the difference, because I don't do the formula. If I say let's do coffee soon, I actually mean that we'll drink coffee.
So I guess a better thing is to contact me, and say "what would be the most helpful thing I could do for you in the next week or two?" or "I have two hours spare this Thursday, would you like me to do something for you?" or "I'd like to cook you dinner and drop it around, when would be the best day, Friday or Sunday? And would you prefer Thai or Indian?"
Then I know you really mean it, and you make it clear what you're prepared to do for me and when.
Another cool thing is to offer things that maybe I don't even know you can do or are willing to do.
For instance, one friend called and said, I know you have to shop for your party on Friday, would you like me to take care of it for you? I can do it Thursday afternoon if you give me a list. Another friend said "I'm a trained masseuse, would you like a massage every week or two?" I would never have dreamed of asking for either of those things but they were very welcome indeed.
I really appreciate quick catchup calls, too, even if you don't have time to help with anything practical.
What would be a dream conversation for you, when catching up with friends?
I like my illness to be acknowledged, with the questions I mentioned earlier. I also like them to find out how long I'd like the conversation/visit to be, according to my current energy level. I always want a phone call first, not a drop around. And then I like to talk about other stuff, ideally their lives, because I enjoy hearing about other people and their relationships and stuff. It takes me out of myself and my self preoccupation, and for a while I can forget that I'm ill.
Also I would like people to believe, to truly understand, that there's nothing you can say to Julian that you can't say in front of me. We share everything.
What can friends do for J to help his ~load~?
This is something we're addressing this week and next. They can offer to do things like drop around for half an hour, do some small stuff around the house, to prevent him having to do every damn thing. Clean the kitchen, load the dishwasher, buy supplies at the supermarket, go and get takeaway for our dinner, drive me somewhere, do small errands, that kind of stuff.
Especially on the days he's working (Tuesdays and Fridays). Sometimes that might combine with a short talking/cup of tea type visit, and sometimes it would be better to just come, do whatever it is, and then leave. If such kind services always combine with a visit that will add to our load, not reduce it, because social interaction takes energy, which sometimes I have and sometimes not.
He also appreciates calls from people asking how he's doing, and letting him vent a bit.
Is there a better time to call/visit you?
Not especially. It varies more by day than by time. Just make sure you call ahead of time, and maybe call just beforehand to see if I'm still up to it.
Important also is the length of visit. Shorter is better. At two hours I am usually starting to get tired. About an hour to 90 minutes is a good length of time. And often, we will tell you "we'll throw you out after X time". When we do throw you out, go. Don't linger over your drinks, don't stop J at the front door and ask "how are you really", and "how is she really", and so on. It adds half an hour to the visit, because I'm not back in my private space yet. I don't want to have to go to the bedroom to be away from visitors.
If you want answers to those questions you can ask them in front of me. I'd prefer you to ask me directly, or ask J directly. It's how we operate, and there is no need to be protective of my sensitivities. If you inadvertently make one of us cry, well that's part of the territory, and it would happen at some other point anyway. It's honest and real, and that's our life now. If one of us can't handle that discussion at that moment, we'll say so. "Let's talk about something else," one of us will say .
I'll give this question more thought, too, and add to it later.
Sadly, I think it's impossible to "get it right". Luckily, I mostly just accept what people do and say because they are usually doing and saying things with the most beautiful intentions, and when they get it wrong, I take it in the spirit it's intended.
But okay, I'll give it a go to set out the ideal.
What should people ask you?
- how are you?
The important thing here is to help me understand how much detail you want. Like most very ill people, I am preoccupied with my body a lot of the time, because it's imposed on me. My whole day is centred around how much energy I have, my meds, my sleep schedule, my medical appointments, my side effects management and so on. It makes me far more self centred than I'd like, but I have no choice if I am to manage this effectively.
I will blather on for ages about it if you let me. But I recognise it's really boring for most everyone else. It's hard for me to judge how much to say. So normally, I begin with "Okay considering", or "Crap today", or whatever. Then if you want more detail, ask more. "How is your latest chemo going?" or "How are the side effects?" or whatever.
I will then give you a shortish summary and only go into detail if you again ask for more. I don't want to bore everyone I know with irrelevant details of my illness. On the other hand, some interest is good because it's what I'm living now.
How can people know what you need?
This is a good question. They can't. Sometimes I don't either. But the statement, "let me know if there's anything I can do", is a formula statement. Often made with genuine intent, but I can't tell the difference between that and the kind of statement people make when they say "let's do a coffee some time soon".
Sometimes that means we'll drink coffee in a coffee shop in the next few weeks and other times, it's just a way to end a conversation pleasantly with no real intent behind it. I've always been bad at telling the difference, because I don't do the formula. If I say let's do coffee soon, I actually mean that we'll drink coffee.
So I guess a better thing is to contact me, and say "what would be the most helpful thing I could do for you in the next week or two?" or "I have two hours spare this Thursday, would you like me to do something for you?" or "I'd like to cook you dinner and drop it around, when would be the best day, Friday or Sunday? And would you prefer Thai or Indian?"
Then I know you really mean it, and you make it clear what you're prepared to do for me and when.
Another cool thing is to offer things that maybe I don't even know you can do or are willing to do.
For instance, one friend called and said, I know you have to shop for your party on Friday, would you like me to take care of it for you? I can do it Thursday afternoon if you give me a list. Another friend said "I'm a trained masseuse, would you like a massage every week or two?" I would never have dreamed of asking for either of those things but they were very welcome indeed.
I really appreciate quick catchup calls, too, even if you don't have time to help with anything practical.
What would be a dream conversation for you, when catching up with friends?
I like my illness to be acknowledged, with the questions I mentioned earlier. I also like them to find out how long I'd like the conversation/visit to be, according to my current energy level. I always want a phone call first, not a drop around. And then I like to talk about other stuff, ideally their lives, because I enjoy hearing about other people and their relationships and stuff. It takes me out of myself and my self preoccupation, and for a while I can forget that I'm ill.
Also I would like people to believe, to truly understand, that there's nothing you can say to Julian that you can't say in front of me. We share everything.
What can friends do for J to help his ~load~?
This is something we're addressing this week and next. They can offer to do things like drop around for half an hour, do some small stuff around the house, to prevent him having to do every damn thing. Clean the kitchen, load the dishwasher, buy supplies at the supermarket, go and get takeaway for our dinner, drive me somewhere, do small errands, that kind of stuff.
Especially on the days he's working (Tuesdays and Fridays). Sometimes that might combine with a short talking/cup of tea type visit, and sometimes it would be better to just come, do whatever it is, and then leave. If such kind services always combine with a visit that will add to our load, not reduce it, because social interaction takes energy, which sometimes I have and sometimes not.
He also appreciates calls from people asking how he's doing, and letting him vent a bit.
Is there a better time to call/visit you?
Not especially. It varies more by day than by time. Just make sure you call ahead of time, and maybe call just beforehand to see if I'm still up to it.
Important also is the length of visit. Shorter is better. At two hours I am usually starting to get tired. About an hour to 90 minutes is a good length of time. And often, we will tell you "we'll throw you out after X time". When we do throw you out, go. Don't linger over your drinks, don't stop J at the front door and ask "how are you really", and "how is she really", and so on. It adds half an hour to the visit, because I'm not back in my private space yet. I don't want to have to go to the bedroom to be away from visitors.
If you want answers to those questions you can ask them in front of me. I'd prefer you to ask me directly, or ask J directly. It's how we operate, and there is no need to be protective of my sensitivities. If you inadvertently make one of us cry, well that's part of the territory, and it would happen at some other point anyway. It's honest and real, and that's our life now. If one of us can't handle that discussion at that moment, we'll say so. "Let's talk about something else," one of us will say .
I'll give this question more thought, too, and add to it later.