These are questions that have been asked about visiting me, and I figured that if I left all the answers up here in plain view then perhaps other people could have their questions about visiting me answered too.
If you have a question you want to ask, please feel totally free to either email me which will be private, or if you want to be anonymous then you can leave a comment at the bottom of the page - people will see your question but if you leave the 'name' part blank, or just make up a name, nobody will know it's you :).
Can my visit make you worse? For example if I make you tired...
Unless you turn up without making an appointment and/or phoning first, or you refuse to leave when asked, then there's no chance of making me worse.
Sometimes I'll choose to make myself over-tired because I'm enjoying the visit - this is my choice, it's my body and it won't make me worse in any long-term or permanent way. It's just that sometimes the needs of emotional/mental health (eg: social contact) and physical health (eg: rest) conflict, and I can't always decide in favour of the physical if I want my emotional health to stay okay. But its my responsibility, and mine only, to let you know if I need you to leave. The only thing you need to do is to leave if I ask you to.
How should I treat your helpers? I don't want to ignore them, because that would be rude, but I don't know that treating them like another friend is quite right either ...
You're welcome to chat to them if they come into the vicinity - they'll probably answer the door and introduce themselves and feel free to say "G'day" and ask how they are if you want to. But they're basically here to help me and and do things for me and that's what they'll get on with doing. They won't sit down and talk with us or intrude, and it really is okay to pretty much just let them get on with their jobs and not pay a lot of attention to them.
If you have ever hired a cleaner, or somebody to mow your lawn, treat them similarly to how you would treat that person. Be polite of course, but there's no obligation to chat to them.
Also, sometimes I'll need a helper for something - to get me a tablet, or adjust something, or get me a drink. I've got a computer program that plays a loud sound if they can't hear me call out (my voice is unusually soft) or I'll just call out for them. Please don't feel like you should be doing the helping just because you're here - you're here as my friend not my helper, and my helper is here for the helping stuff. Just let them do their job.
Do you feel uncomfortable having people around while your carers are doing things for you, like face washes, feeding etc?
For things like that, no, I don't mind in the slightest. That stuff gets done by/for me every day, basically, and occasionally by people like males I've never met before! So I've totally got over the "this is really embarrassing and shameful and I should be able to do it myself, dammit!" phase I went through for a while when I started needing help.
And if the carer needs to help me with something that it's not appropriate for you to be watching (for example if I need to have clothes changed), then I'll just politely ask you to go sit in the front room for a few minutes and we'll call when everything is done and I'm decent again.
Oh, and if the whole carer thing just squicks you and you'd rather avoid it altogether, the carers are currently scheduled to turn up 10:30am-1:30pm and 6pm-8pm every day. Just visit at some other time and you won't ever have to run into them. Actually, I tend to schedule most visits for between the two shifts anyway, as this is the time when I feel best.
Somebody told me you fell asleep while they were visiting you ... what should I do if this happens? I'm worried I'd feel awkward and confused ...
If we plan the visit in advance, and you phone right before you start getting ready to leave to make sure its still OK to come (I ask everybody to always do this, in case of last-minute health emergencies on my part), then it's pretty unlikely for me to fall asleep while you're here. On the other hand, yes, it does happen. Please remember it has nothing to do with being bored or not liking you, it's just something that my disability does to me sometimes when I'm more exhausted than usual.
What should you do if I fall asleep? Well, whatever feels best, really - honestly, feel quite free to leave at any stage, you're in no way compelled to hang around with nothing to do ... but on the other hand if you're having a wonderful time playing with AniCat and don't feel like leaving at all, you are quite welcome to stay, too.
If I wake up and you're still around, we can enjoy some more time together, and if I wake up and you've gone home I'll probably give you a call and apologise for falling asleep and we can (if you're still game!) hopefully make another time for you to come over.
Sometimes I'm worried I've got nothing to say, and that if I visit you'll just get bored with me, so I want to wait until I've done something interesting before I come over.
Answer one: Remember, what you do in your life and what I do in mine are very different - in my life "something interesting" really means anything that happens outside this room! Remember, aside from medical reasons I haven't been out somewhere for over a year.
You could quite literally keep me interested for hours me by telling me what you did in your week - what you did at work (I've never had a job), any places you went to (down the street, even! What new stuff have they started selling in supermarkets in the 5 years since I've been to one?), people you saw, gaming/partying/visiting you did, programming or writing or knitting or gardening, cooking, shopping ... etc. These might not be so interesting to you though, so generally I don't ask about this stuff unless it comes up in conversation. I talk about things that I'm interested in at the moment, recent conversations I can recall at the moment have included:
- What myself and a friend thought about the media's brainwashing of females that we must be completely blemish free and unhealthily thin to be 'normal' and what we thought about it and what we did to combat it.
- About why a friend found writing and reading LOTR slashfic was interesting.
- Explaning to me what the rules of women's indoor soccer and what it feels like to play in the different positions on the field.
- Lots of different bits and pieces about the wonderfulness of pets, especially Tonkinese cats - which we both owned. No, no bias here, move right along!
- Computers, computers, and more computers - since most of the people I know are even geekier than me this is a very common topic!
- Experiences a friend has had with being unemployed, the stress it causes and what ways I could be supportive, and what not to do/say, too!
Answer Two: Even if your entire visit was you dropping in for five minutes, sitting beside my bed and holding my hand and then leaving, and never saying a single word for the entire time, then I would still really enjoy it and get pleasure from your visit both during the visit and the memories afterwards. Whether you chatter endlessly, listen to me chatter endlessly, have a give-and-take conversation, or if we are both totally silent it doesn't change that I still get to see another face, I still get the warmfuzzy feeling that somebody wanted to be here, and I still enjoy seeing you. Silence is something that a lot of healthy people are not used to but it really is okay to be silent with me.
Is it OK to spontaneously drop in because I happen to be in the neighbourhood?
Provided that you phone me first to check that I'm awake and accepting visitors (and don't get offended if I say "no"), then it's gloriously wonderful! If you don't call, you might catch me in the middle of a nap, or being given a bed-bath, or even when I'm just a bit whacked out and not feeling social, and I find it much harder to turn somebody away when they're literally at the front door standing there. So please call first.
Living in the era of mobile phones as we do, it's usually not a problem for you to drop me a line! If it will be hard to call for some reason, one solution could be to make a tentative appointment - for example you could tell me that you might be in the area on Monday afternoon and might be able to drop in, we could figure something out around that.
Is there a difference between sick and disabled?
I think that different people will generally all say, "yes", but will give you different reasons why they feel this way.
My personal feeling is that the biggest reason that these are different is that 'sickness' is usually a thing that ends after a fairly short and usually fairly defined time frame, and even when it takes a long time (like with glandular fever/mono, or a severely broken bone) you know it's going to end, and approximately when. 'Disabled' on the other hand is generally something that's either permanent or has an indefinite time frame where, like somebody with early-stage CFS who has a possibility of getting better, but it won't happen very soon and you can never know when it'll happen.
But a lot of things flow from that. The one that I find most people have trouble with is not asking if I'm 'getting better yet' or assuming that if I have a good day I'm 'turning the corner' and things like that. This disease goes up and down ... up and down like a wobbly sine wave, in that - yes - it does go in the 'up' direction on and off but - no - the 'up' parts are no indication that the sine wave has magically turned into a tan wave! Actually, having to explain this 'up-direction does not mean it will continue going up' fact over and over is one of the most frustrating things I find about interacting socially.
Another of the really important differences is mentioned in the Open Letter To Those Without CFS/Fibro , where it says:
When you've got the flu you probably feel miserable with it, but I've been like this for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. I may be tired. I may be in pain. I may be sicker/more disabled that ever.
That's just a short snippet, but the point is that sick people are usually unhappy with being sick and quite mopey and get lots of attention and comforts and being looked after because its not their usual way of being. People who are disabled are used to it, for me I still get upset at times (mostly when things get worse, actually), but I try hard to just deal with it. I don't get special attention and stuff for being disabled, in fact I get less.
There are other less apparent differences and I'd be happy to go into them if anybody is interested, stuff like having to think of a future with disability, adjusting your self-image around any equipment your disability makes necessary, and so on.
Do you mind if I ask questions about your disability or how you are feeling?
Do I mind if you ask me: no.
Am I always willing to answer you: no.
Usually I don't mind explaining stuff, especially when the listener is genuinely interested in understanding what I'm saying (and especially understanding the up-and-down sine-wave thing I explained above). But I'm only human, so sometimes I'm sick of the topic, or I'm too exhausted to be coherent about it, or I might just be feeling blah and not wanting to talk about myself in case I get more blah. But in that case, I'll just say so and we can move onto another topic. I'll never be offended that somebody was interested in me!
... but they're really dumb questions! I don't know the first thing about your disability!
Answer one: No question is ever dumb. See the answer above about if I don't want to answer.
Answer two: If you're too shy to ask a dumb question, you might try learning about my disabilities at my website - just wander around (especially in the Fibro/CFS Foothold section) and you'll find a pile of information you can't jump over. After that, you'll probably know more about me than I do.
Can I visit when I'm feeling sick too?
Sorry, but no! Because my immune system is quite broken, I'll catch anything that's even a little bit contagious, and when I do get it, it'll probably be much much worse and take much much longer to get better, than a person with a regular immune system would.
This also applies if you're not sick but somebody you live with, or are very close to (eg: a partner or a child), is sick and you have been with them. With lots of diseases, you can be contagious for up to several days before you ever have any symptoms, so it's better to be safe than sorry. We can always re-schedule a visit for when you're better or its clear you aren't going to get sick.
In short: If you're sick, or have been exposed to somebody who's sick, then stay away if you know you should stay away, or call me and ask what to do if you're doubtful.
Do you want to engage in robust debate, arguing points of interest? I know that when I discuss things I'm passionate about, I can find myself getting upset, and even finding that it starts a headache. I'm worried that if I disagree with you, and have a debate, that the consequences for you could be pretty bad. On the other hand, if I can't say what I'm thinking, what's the point?
To be answered soon ... (Draft: Arguments don't interest me, but debate won't make me sick. You can say what you're thinking.)
Are you more likely to want visitors, or do you get swamped at times like Christmas and the holidays?
To be answered soon ... (Draft: More likely, since my family members aren't into visiting me and I'm short on friends)
I make great cookies, but I'm never sure whether or not to bring them, because I don't know much about your diet. Can you eat all the normal things?
This depends on a whole bunch of things that are really complicated and change all the time, so if you're feeling like cooking something for me the best thing to do is contact me in some way and we can have a chat about it. It might turn out to be a great idea, it might turn out to be a great idea that needs some tweaks, or it might turn out to be an idea that I can't go with just now ... either way, please don't be too offended if I can't eat what you'd like to offer.
If it turns out that what you wanted to cook isn't something I can eat, for any reason, but you've still got the urge to do something for me, just say so and we can probably figure out something that works for both of us.
Can I bring my cat? My cat always comes and cheers me up when I'm sick, so I thought you might want to meet him...
I'm sure he's a lovely cat, but I'm not sure how my cat would feel about his territory being invaded, unfortunately. How about you just come over and meet my cat, AniCat? He loves cuddles and attention and adores the interesting smells brought into the house by people who own cats or dogs of their own. He'll probably fall in love with you!
