Since I have come down with lyme, it has opened my eyes to how important these manners are to me now.

I don't have the freedom to get in the car and leave since I am no longer driving myself.

I would like to start a list and hope that you will add to it.

1. Call ahead of time to invite a person to an event. (Corrected)

(A person with chronic illness may need to make sure they stay down all day if they are going to be out for a couple of hours in the evening)

2. When picking that person up, go to the front door to pick them up. Do not tell them to wait outside in the dark for you.

3. Walk the person back to the door after the event.

4. If you see that the person you are with is fading, ask them if they are OK or if they want to continue or if they would like to take a break, etc.

5. If the person is sensitive to smells, do not wear perfume, aftershave, etc

6. If the person tells you that it is too much to ride in the car and listen to the music and you talk all at the same time remember this.

Try to keep it simple. Turn the radio or CD player off or ask if they are up to listening to music, etc.

7. Do not smoke if the person is sensitive to smoke.

8. The chronic ill person needs to feel safe around you. Help them to feel this way. It is important that they get out when possible and it is greatly appreciated.

9. Do not make them feel as if they are a burden or you are doing them a favor by getting them out of the house.

Do not tell them that they need to get out more. They are doing the best they can and would like to get out more. It is frustrating when the body does not co operate. Don't add too that frustration.

10. When you tell a person you will meet them at a certain place at a certain time.

Be there. Don't show up late with some lame excuse that someone called and you couldn't get off of the phone or you ran into some one and couldn't get away from them because they talked too much.

Tell that person you are meeting someone and could you continue the conversation at another time.

Not only is this considered rude to healthy people, but chronic ill people usually only have a short amount of time they can be out and about. They value their time even more.

11. If you have someone with you. Do not leave them stranded. If you plan on taking off somewhere, make sure they are OK with it, tell them how long you are going to be gone, etc.

Don't tell them you are going to be gone 5 or 10 minutes to drop something off and then show up an hour or two later with another lame excuse like the CPA asked me to wait in his office because he wanted to talk to me.

Think of your friend first. Tell the CPA that is fine but you need to contact your friend first if the wait is going to be there long.

12. If you have invited a friend over to eat at a certain time, have the meal ready within reasonable time limits.

Keep incoming phone calls short. It is very rude to talk on the phone for a lengthy period of time when you have guests.

Do not tell them the meal will be at one time and then an hour or two later still not have it ready.

13. If you have a sick friend and have told them you will be bringing over something for them to eat, bring it over within a reasonable amount of time.

Do not tell them you are bringing them lunch at lunch time and then show up 3 hours later with more lame excuses.

14. If you tell someone that you will call them around a certain time. Call them.

15. If you tell someone you will be stopping over on a certain day at a certain time, do it or at least call them and tell them that the plans have changed.

16. - don't expect us to pick up the telephone much - we're really not in the mood to talk
-don't keep us on phone long; sometimes speaking is difficult because of air hunger

17. I may not look sick (somedays, most days I'm a yellowish gray), but expect that it will be like I'm going through chemo for the next 1-4 yrs. and we don't know what to expect from day to day.

18. We are sick all of the time and that WE ARE NOT THE SAME people we were before

Any other ideas?

[This message has been edited by kam (edited 21 December 2004).]

Not that it's anyone's fault. Until you've experienced chemical sensitivities you have no idea just how easy it is to trigger someone who is sensitive.

no. 1 I think should read "invite" .. hadn't heard of that word in my neck of the woods.

Perhaps add another about our photo sensitivities:

Please respect our need to have total darkness for our extremely sensitive eyes. If we have our shades down and curtains drawn, please don't ask us to open them or turn on the lights.

We should not go out during the day when it's sunny, so please refrain from laughing or making comments about our dark sunglasses, hat, long sleeves, long pants, and gloves if we are driving.

When we visit you, is it possible to can visit in the "darkest" area which is comfortable for our eyes and our pain?

Kam, thanks again for a great, sensitive list. Good list to give family/friends!

Most people think I am sleeping when I have my eyes closed. But, it is because of the light or that I am just trying to...???

I can't seem to explain right now. Need to take a break.

I'm much better with planning than spontaneous plans but if I'm having a good day, sometimes I'll just make plans right then for stuff to do that day. On the flip side, if I'm having a bad day, I try to cancel what I can and see what I can still manage to do.

Great job with the list and I'll try to think of any others that might be good to add.

--Annie

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``The best way out is always through.'' -Robert Frost

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Click here to see my Lyme journal.

Please do not just "stop by" the house of your ill friend for a quick visit. She will more than likely have a heart attack before you even get to her door.

Actually, kidding about the second part. Sort of. But people don't realize that it's not the length of time a visit is that stresses us. It's the visit. Especially surprise visits.

We can't run around and tidy up in the minute or so it takes the visitor to get from their car to our front door.

At least I can't. I may be more on the sloppy side than the rest of you. Not by choice, mind you.

I've been dealing with this annoying stuffs for years so this is great.

#5 - perfume. A few years back I was with a friend with another friend of hers in the car. It was cold so the window was up and her friend must have dumped a whole bottle of cheap perfume instead of showering. I wanted to die. By the time we reached our destination I got a major headache and asked my family to pick me up and ended my supposedly outing.

#6 - music. Nothing worse than being in the car with someone constantly blasting their music especially from their own headset and I still can hear it.

#15 - surprise visits. When the same person committed the same behavior I answered behind the closed door and said I'm in my birthday suit and don't plan to change my outfit yet. I'll call her when I'm wearing something else. She's very religious so my birthday suit is not appropriate for her.

You brought up something I have been having trouble dealing with....being able to express myself honestly.

I seem to have to go by my gut instinct a lot. I get a feeling. I don't know why, can't analyse it. Just know that it is better if I stay away from that person.

I also don't seem to be able to hold my own due to teflon mind.

For example: a co worker took me to get a spinal tap. I was told if I laid down on the ride home and then laid down when I got home. I would be OK and we would not need to get a hotel room for the night.

I told the person who drove me there this. It seems she had teflon mind too. As she kept finding reasons to stop and get me out of the car. I would get out and then recall I needed to be lying down. I was so low functioning...I would just return to the car.

I wasn't able to tell her why. I just know she had that type of personalty that if you tell them they can't do something...this is what they want to do.

Same with the in home health care person I recently laid off. I told her I was too sick to eat breakfast. She brings me breakfast immediately. The day before, I had told her I was starving and wasn't able to fix myself breakfast that morning. She said she would get to it after she cleaned up the kitchen, etc. Two hours later she comes in to see what I want. She thens needs to go to the store to get fresh fruit and yogurt. She comes back with raw cranberries to put in my plain yogurt.

I was so low on resources, I wasn't able to keep either party in line on this occasions and hold my ground.

I had to pick my batttles. And at that point, making sure I continued to breath was taking all I had.

As with the person who comes to your door, being assertive and stating our needs seems to be too much at this time.

I did have a lady show up the other day unannounced and knock softly. I was too out of it to answer the door. It turned out for the better. She then sent me an email setting up a time for her to come.

She is like a bull in a china shop when she comes in here. Too much. She will be fading into the background again soon I am sure.

She shows up about once a year in my life if not more.

Some people, it seems like a constant battle and not worth it.

I am so glad those people have faded off into the background for the most part.

I just need to recall what the obstacles are when dealing with them so I can recall if I want to attend whatever it is they are inviting me to. Now, that I think of it...NO.

I'll save my strength for those people I know will be able to handle things if I fade out and need to go home.

I also had a lady make an appointment for me to see her doc. Her doc was over an hour away.

It was a nice gesture on her part. I need a primary doc. But, I wasn't able to figure out why I didn't want to go at the time.

Later, I figured out I have seen so many docs and it has been a waste of energy, that I wasn't ready to try another one yet.

I am ready to run when I see a person in a white coat.

It is a good booklet to hand out to people to help them understand.

I met a new person yesterday who came to the house. I was trying to explain to her why I needed help around the house.

I didn't do a very good job of it. After she left, I reflected on what I said. I said that I was just slow so the work doesn't get done and it starts to back up very quickly.

When you look normal on the outside and you are talking to a person who doesn't have a clue and they are thinking "normal"...that was not the best way to explain why I am not able to do routine chores at this time.

All I was able to do yesterday was go to the store and pick up 3 pot pies...which I usually don't eat...but needed something easy to fix. I just didn't eat the crust.

It was good I was able to do this. I am not always able to get to the store.

I would like to find a short, easy to explain reason why I need help around the house and why I am not functioning like I use to. Most people don't have a clue what lyme disease can do to you. I know I didn't.

Guess, I need to get more of those "But You Don't Look Sick books. The problem is I have given them to people who I knew were going to be working with me and I do not think the last ones even read them.

This leads me to another etiquette rule for others: don't keep telling us that we must eat. We know this and it makes us feel even worse. We are eating the most we can get down without yacking.

Other guidelines i thought of:
- don't expect us to pick up the telephone much - we're really not in the mood to talk
-don't keep us on phone long; sometimes speaking is difficult because of air hunger

this will sound bizarre, but my llmd said that psyhic (gut feelings actually coming from babs). I have that a lot of that going on and I listen to it all the time now.

I have trouble expressing myself honestly. i have trouble expressing.

i had to just lay off my home helper. she wasn't getting it. being assertive with her was too hard for me. too much energy? or asking too much of the executive function part of our brain? i couldn't retrain her, she had already gotten used to getting away with too much (she got lazy).

i know I can't lead a solitary life (although most days it seems appealing at this point in my disease). however, managing all of the variables like light, sound, temperature, smells (did I miss anthing?) is very challenging.

One of the ways that I have decided to look at it so that I wouldn't feel as badly when I am alienating myself is that I see my disease as my job. so i have to do whatever i have to do to get my job done. actually this is how I explained it to my new home helper I just hired friday.

I wanted to try to be as assertive as possible so that i don't have to keep training new helpers (this is our
fourth). i told her that i would try my best to be ``pleasant'' but that i surely wouldn't be much fun. i told her not to expect much from me. and i am going to type a list (this seems to be my easiest form of communication because i can take my time, stop when i need to rest, erase and edit) of the things that are difficult for me and what i expect.

I also told her that I may not look sick (somedays, most days I'm a yellowish gray), but that what she should expect is that it will be like I'm going through chemo for the next 1-4 yrs. and that we don't know what to expect from day to day.

Also, i may look o.k., but actually i am not getting enough oxygen because of the disease (it's actually the parasite, but can't even begin to discuss another complicated aspect of all of this because their eye balls begin to float to the back of their sockets).

My guidleline for myself lately is IF I DON'T KNOW, THE ANSWER (for the time being) IS NO. it seems to be
taking the pressure off me a bit.

arg82,
such a good point, that we are sick all of the time and that WE ARE NOT THE SAME people we were before.

I guess i need to explain to people that I CAN'T EVEN KEEP UP with my daily personality changes. of course the core or the essence of who we are is the same, but our idiosyncrhocies have changed and continue to change.

i think that for many of my family and friends they don't want to realize that i continue to be sick...haven't snapped out of it yet.

tabbytamer,
my husband had left the front door open one night last week because he had brought the x-mas tree in and because someone saw the front door open she thought she would just drop in...just walked right into the house. My heart skipped a few beats, thought was an intruder and also threw my entire night off. I know absolutely that she wanted to help, how can i be upset with such kindness, but i was.

Spoon theory is great, but obstacles ones would have by telling the story is either foggy brain kicked in so you probably forgot where you're at or too tired to even finish the story.

Story of our life, right.

Oh, a good one I'd just think of. Tell them if they have not personally deliver a baby how can they tell you how painful it is. Or if they have not eating certain food how can they tell you if it is tasty or not. Especially if you've already experienced it yourself. Maybe they should carry around a 20 or 30 lbs bag in front of their body and imagined if they also have severe aches & pains with that 24/7. How would they feel?

I bet ya some still think we're making excuses and being lazy. Oh yeah, that happened to me. So eventually, like you, I ignored and stay away from these judgmental people and stop wasting my time.

I'd lost quite a few "good" friends thru the years and I don't miss any of it. I'd discovered that I was a great person for them to come and complaint and dumped their pile of junks, but if I need help they are too busy to listen to my concerns. I had lots of friends and after this episode I discovered my 4 true friends and I thank God for having them in my life.

A very good point you made is being able to express yourself honesty. The society is making it very difficult for us to be able to express ourselves honestly. Sometimes it costs to do that. I really wish that everyone could express themselves honestly so we can stop all the craps around us.

We get judge, harass, reprimand, confront, etc. when we're being expressive. It's strange that lately I'd withheld myself sometimes sharing with others especially the newbies about my success with podi patch or even adding a link about it. Ok, so here it is www.podipatch.com , www.podipatch.com , www.podipatch.com

Ahhhhh..... that feels great! I understand some of us had healing crisis using it, but if it could just help some of us why not letting others know so they can find out for themselves. I had healing crisis using it too, but I did not let it stopped me.

It's like running track with hurdles. So do you stop when you reached the hurdles or do you jump over the hurdles?

It's a personal choice here for each one of us. I don't think it is fair to tell the rest of the world that whatever we chose personally is the best for them as well.

For me being able to express myself honestly I'm able to allow others to chose what's best for them as well. Just because I like apple and you like grape would make me right and you're wrong or vice versa.

So Kam, my dear. I would like you to express yourselves honestly with me!

BTW, I love products from www.podipatch.com or www.akgnaturals.com

I welcome all newbies to email me if you want more info or just log in to their websites and try it for yourself. Don't forget to let us know how it goes.

Thanks Kam for bringing this topic to light for me. Much love to you.

All I can think of right now is about running the hurdles. I have a question about that.

If I had the strength I would kick the hurdle over and walk across it at this point or go around it.

The phone is so true. It frustrates me at times. I think I have one person who has been good at just leaving messages for me and being patient with me on this. I am so thankful for her.

I will go to the top and add it in once the brain is oiled.

I just laid my in home health care person off also. Actually it worked rather well.

I knew something was wrong. I wasn't sure how to handle it. So, I asked her not to come when she was supposed to come next. ..no I told her. She was the type if I ask not to come she would show up anyway. I had to be firm on this.

I told her I would get back to her on Sunday Night about Monday. I then sent her an email telling her I wanted the house to myself that week.

It bothered me that I could't put two and two together to figure out what to do. But, I wanted to buy myself some time in order to figure things out.

She ended up telling me she could no longer come. This worked out well.

Paisley, I miss not having a yard to sit in. I live in apartments currently. If I sit outside I will not have the luxary of just enjoying being outside. I will need to be prepared to be polite.

I am looking forward to the time I can sit out with the neighbors and enjoy watching the kids play and talking.

I purchased side walk chalk when I first moved here because I noticed the kids needed something to do when they were playing outside. I had planned on sitting on the sidewalk and drawing pictures from the covers of my children's books with them.

I have yet to be able to do this after being here almost 2 years.

I need to stop typing. I am pushing the envelope so to speak.

I am only running on 1/2 clogged piston right now.