Do's and Don'ts

A friend of mine has this on her facebook page and I just love it, so I thought I would share (with her permission)


Do's and Don'ts when dealing with someone who has Chiari


DONT assume because I look well that I feel well. Looks can be VERY decieving. Many days I look great but feel horrible.

DONT tell me you know how I feel! No one knows how someone else feels. Even two people with the same disease may feel totally different, but they can empathize.

DONT tell me you have the same pain. We all have varying thresholds of pain and pain CANNOT be measured.

DONT tell me "It could be worse." Yes, it could be, but I don't need to be reminded.

DONT decide what I am capable of doing! Allow me to decide what activities I can participate in.  There may be times I make the wrong decision, and if I do, I'll know it soon enough.

DONT be upset that you cannot ease my problems. It won't do any good for both of us to be miserable.

DONT ask me how I feel unless you REALLY want to know. You may hear a lot more than you are prepared to listen to.

DONT assume because I did a certain activity yesterday, that I can do it today! Chiari is ever changing.

DO learn everything you can about the disease. The more you know, the better equipped you will be to know what to expect.

DO realize I am angry and frustrated with the disease, NOT with you.

DO let me know you are available to help me when I ask. I'll be grateful!

DO offer me lots of hugs and encouragement!!!!

DO understand why I cancel plans at the last minute. I never know from one day to the next, or from one hour to the next, how I will feel. Chiari is like that!

DO continue to invite me to all the activities. Just because I am not able to bike ride along with the gang DOES NOT mean I can't meet you for the picnic at the end of the trail. Please let me decide!

[Alicia696]

WOW this is so true!!! I love this I need to put this one my frig for everyone in my house and for those who come over an don't understand what we go through!

Alicia

[shanmomof3]

Lol Alicia! I printed it out this morning so i could put it on my fridge lol I also thought we could add to it. So if you think of something thats not on here just add a post bc i'm sure the rest of us would like to see it! ~ Shannon

[selmaS]

Hi Shannon...I have seen this b4 too....thanks for sharing it so everyone else got to see it too : )

[pdxmomof3boys]

Exactly! Don't assume that because I just threw a birthday party for my son that I was feeling well enough to do it, I'm pushing myself. AND just because I didn't ask for help doesn't mean I don't need it. AND if I didn't remember something you told me yesterday it doesn't mean I wasn't listening or didn't find it important enough. AND just because you've never heard of it doesn't mean it doesn't exist.

And....drumroll....

Just because I had surgery to "fix" the problem doesn't mean it's all the way fixed, or ever will be!

Loved this...where was it a few months ago! Thanks for sharing :)

[rod44]

Don't assume I'm incompetent or lazy because I cant do something, the reason I cant is because my brain/body wont allow me.....

Thanks for sharing Shannon...

Ray

[shanmomof3]

The pushing yourself to do something is SO right! And if i push myself to do something be prepared for me to be "down" or non-functioning for a day or two. Thats the way it works for me!

[*Stormy*]

I feel that too...you push yourself to do something and everyone thinks "hey she must be better!" They have to realize that sometimes you need to do something even if you suffer the consequences later.
I had a very busy Saturday and I am definitely suffering now....but I think it is something I am going to have to get used to...

[laratterman]

I hope you're feeling better and getting back on your feet!

I had to laugh when I saw this!  I snitched it too!  Did you get it from Christa?  She's such a love!  Did  you read the other one...

"I Don't Look Ill"

"I don't look ill...... although I might have a pained expression in my face which may appear to be outwardly grumpy. Take it that I am in pain and I am trying to hide it from you the best I can.

If I am quiet or in a non-talkative mood, don't assume that I am in a bad mood, I am merely trying to come to terms with what I can no longer achieve, or can no longer do all that I want to do, and that it is very frustrating.

On the other hand, I might be exhausted from dealing with the pain and discomfort, or trying my hardest not to fall over with the balance issues that I have.

Do try not to pity me, I can do that very well for myself at times and I do try my hardest not to sink deeper in to it.

Don't compare me to other people with "similar" pain issues, everyone has their own problems, some worse than mine, some not so. Some people have managed to come to terms with it, I might not have yet. Pain is different in all people. Not even two Chiarians have the same symptoms, although we do share a common bond.

I know it could be a lot worse, and I am grateful that it isn't, I really am, but it doesn't make me feel less pain or feel better. In fact sometimes it makes me feel down that there are people that are worse off than me.

Just because I am in pain, doesn't mean that I can do much about it. Paracetamol is not a cure all. Some medications don't work, some have horrible side effects and give me other problems that add to the stress and feeling of unwell.

Don't tell me what I can and cannot do, don't label me as disabled. I want to try and do the things that I used to so, if I can't, then at least I have tried and have ticked off another box. Don't blame me for trying again and again........ I will get the message eventually.

Don't assume that I am angry or upset with you......sometimes we make mistakes and lash out at others. It is merely frustration with myself. I don't mean it, I might have missed the fact that I have upset you. Don't ignore it, tell me so.....but do it nicely please, lets not start an argument.

Don't think that just because I can do something today, that I can do it again straight away, or can do it tomorrow or the day after. My symptoms can change daily, my energy levels and patience can be sapped by the simplest of tasks one day, and appear easy to do the next.

Try and treat me as a "normal" human being, I will respect that and will be very grateful. Try and encourage me to do "normal" as much as possible.

Don't make exceptions for me, I can do that for myself.

Don't be upset if I cancel long standing plans at the last minute - I want to be there, and I am trying to be there but sometimes I can't and don't have the energy or capability on the day. I cannot plan ahead with certainty but I will plan.

Learn about my condition and you will be better armed to either help me when you can, or be aware that sometimes I do need help and haven't asked for it, or that I really don't mean to be rude or ungrateful. I am very grateful, I need friends now more than ever. You will know why I react in the seemingly wrong way sometimes........it will help you stop feeling like you have upset me - You haven't.

Don't be afraid to ask me how I am......I won't always give you bad news, so don't ask expecting it ;) Sometimes I might - so don't ask if you don't want to listen ;)

Help me to see my behaviour through your own eyes - but take a step back first and try and see it through my own.

Don't think that I am just in pain and that's the end of it - there's a reason that the pain is there - it's my bodies way of telling me there's an issue somewhere. That pain leads to other symptoms, and the cause of the pain can also cause other symptoms. Most of which I have no control over.

Don't be afraid of offering me a hug or giving me a little encouragement - we all need that sometimes. If I reciprocate or give you a smile back it means that I appreciate it, If I reply with a grumpy face - I still do appreciate it - very much, there's just something else going on inside my head.

Don't be sad that you cannot take my pain away, don't feel helpless because you cannot help me, what's the point in us both feeling frustrated and useless? Most of the time, I can't do anything about the pain myself.

If I tell you that I cannot do something - I really mean it. If I tell you that I am in pain - don't ask me to empty the dishwasher half an hour later and get upset if I can't. I will try my best you know.

If you ask me to do something in the morning - and it's not done by the time you get home - it isn't because I forgot (well not always) nor is it because I am lazy (although I still can be) it is because I used up all of my energy doing other things. Sometimes all I can manage to do is to sit down and sleep - it doesn't mean that I expect you to do everything for me - it just means that I cannot do as much as you sometimes expect me to and as much as I used to do. I will get around to it - tomorrow I might feel able.

My time table will not always match yours - I can't help it. That's just the way it is.

My life has changed drastically - and not for the better. Please don't expect yours not to change if you are involved in mine.

Know that I still love you, I might shout, I might grumble, I might complain, I might get easily frustrated. I am very grateful of the help and support - just don't make me beg for it.

I have a lot to come to terms with, I have a lot to face up to, it takes time to do so and even longer to accept.

Frustration can bring out the worst in us all - there are two sides to every coin.

If you are behind me in the checkout queue or at the bar - don't talk amongst yourselves about the scar down the back of my head / neck and take guesses as to how it might have happened. My ears work perfectly well - I can hear you. If you are so concerned then ask me. I'm fine with it - I can't hide it, nor would I want to.

I am not always miserable - but by giving me something else to grizzle about isn't necessarily a good thing - there's enough right here to be going on with for now."

There are some things that are a bit different for me, but for the most part... I share these sentiments.