![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
(no subject)
Dec. 7th, 2008 04:12 pmYesterday afternoon the last few weeks caught up with me. Mostly what caught up with me was last week, since it was supposed to be time out because I mostly know my physical limits, but life conspired to throw me much work. If it wasn't for a couple of other people working muchly, I'd be even more the worse for wear today. As it is, I'm sleeping an awful lot and wondering where I kept my excess energy stores. (It took me til now to realise that this is not the year of excess energy stores - I ought to know this by now but the excitement of doing stuff I care about carries me further than it ought.)
My set-top box is reflecting my general state of being and I can only get one TV station. I am thankful it's ABC and not one of the commercial ones.
My letterbox key is reflecting my state of mind and is still in hiding.
All this is a summary of the state of affairs. It's not me complaining because, truly, I'm exhausted, not sick. It's basically me acknowledging to myself that it doesn't matter how well other people think I am, I do have to stop and let my body recover. This weekend I am doing it without cortisone and with as few pain relievers as possible, so it's not comfortable, but it's so much better than, say a month ago.
I only have four hours more teaching in the year and only one project likely to produce crises. As long as I remember that I don't have to be on top of anything else, today won't be a typical day. It's a necessary day, though.
On a slightly related note, if any friends feel worry for me, please ask "Can I help?" Don't say "I'm coming over today and bringing my equipment and I'm going to clean for you because your place needs my special attention." It's nice when people care, but it really doesn't help me to be near chemicals and it makes me feel very small when someone assumes I can't do a thing, especially since I can now wash dishes fully three times a week (the skin on my hands is 90% normal - yeehah!!).
My pride suffered for that phonecall, despite the well-meaningness of the friend and I had to say "Please don't" in any case, because she can't clean without lots of chemicals and I will be back in a bad situation if I encounter them. This is the first time since August that I have not got more than normal inflammation (eczema folk always have some sort, alas) and I intend to keep it that way.
It wasn't the friend's generosity that was the problem - one of the reasons I love her is because of her kind heart - it was the fact that she told me what she would do, rather than asking what I could actually use help with.
What I need sometime in the next fortnight is someone with patience, a strong arm and a car: I need to do a big lot of grocery shopping from several places. I can do the worst of it online with hefty delivery fees and I might end up doing just that, for my sanity's sake, but a friend with a car would be better.
The patience is because that sort of grocery shopping has sometimes been haunted by a commentary on my grocery needs. "Why so much rice? Can't you manage on less?" for instance. "Why packaged food - it's healthier if you make everything from scratch." I end up not buying some things I need and buying others to suit the person's thoughts and I have trouble on high pain weeks when the emergency food isn't there. Or I can't bake a surprise birthday cake because my energies don't run to shopping *and* cooking and the supplies I ought to have aren't there.
It's the same type of thing - caring friends whose brain hasn't quite worked out the dignity aspect of illness.
All this ranting relates to three people who I seldom see these days. I wish I could see them more, but they want to run my life and when people run my life my health suffers.
Which is all I'm trying to say here: if you know someone chronically ill, being supportive includes not trying to manage their life for them. The simple way of doing this is to ask "How can I help you?" and not telling them they should own more/less, cook more/less, run their household the way your run yours or shop in a particular way.
My set-top box is reflecting my general state of being and I can only get one TV station. I am thankful it's ABC and not one of the commercial ones.
My letterbox key is reflecting my state of mind and is still in hiding.
All this is a summary of the state of affairs. It's not me complaining because, truly, I'm exhausted, not sick. It's basically me acknowledging to myself that it doesn't matter how well other people think I am, I do have to stop and let my body recover. This weekend I am doing it without cortisone and with as few pain relievers as possible, so it's not comfortable, but it's so much better than, say a month ago.
I only have four hours more teaching in the year and only one project likely to produce crises. As long as I remember that I don't have to be on top of anything else, today won't be a typical day. It's a necessary day, though.
On a slightly related note, if any friends feel worry for me, please ask "Can I help?" Don't say "I'm coming over today and bringing my equipment and I'm going to clean for you because your place needs my special attention." It's nice when people care, but it really doesn't help me to be near chemicals and it makes me feel very small when someone assumes I can't do a thing, especially since I can now wash dishes fully three times a week (the skin on my hands is 90% normal - yeehah!!).
My pride suffered for that phonecall, despite the well-meaningness of the friend and I had to say "Please don't" in any case, because she can't clean without lots of chemicals and I will be back in a bad situation if I encounter them. This is the first time since August that I have not got more than normal inflammation (eczema folk always have some sort, alas) and I intend to keep it that way.
It wasn't the friend's generosity that was the problem - one of the reasons I love her is because of her kind heart - it was the fact that she told me what she would do, rather than asking what I could actually use help with.
What I need sometime in the next fortnight is someone with patience, a strong arm and a car: I need to do a big lot of grocery shopping from several places. I can do the worst of it online with hefty delivery fees and I might end up doing just that, for my sanity's sake, but a friend with a car would be better.
The patience is because that sort of grocery shopping has sometimes been haunted by a commentary on my grocery needs. "Why so much rice? Can't you manage on less?" for instance. "Why packaged food - it's healthier if you make everything from scratch." I end up not buying some things I need and buying others to suit the person's thoughts and I have trouble on high pain weeks when the emergency food isn't there. Or I can't bake a surprise birthday cake because my energies don't run to shopping *and* cooking and the supplies I ought to have aren't there.
It's the same type of thing - caring friends whose brain hasn't quite worked out the dignity aspect of illness.
All this ranting relates to three people who I seldom see these days. I wish I could see them more, but they want to run my life and when people run my life my health suffers.
Which is all I'm trying to say here: if you know someone chronically ill, being supportive includes not trying to manage their life for them. The simple way of doing this is to ask "How can I help you?" and not telling them they should own more/less, cook more/less, run their household the way your run yours or shop in a particular way.