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Hear us, Listen to us .... understand us ...

Oct 13, 2010 - 7 comments

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 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.

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.

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by Stephiec79, Oct 13, 2010
Very well said : )

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by Stephiec79, Oct 13, 2010
So besides being very well said, I came home and read this to my husband and burst into tears. I am a mess today and haven't been able to put into words how I am feeling...this really says so much for so many of us! Thank you!!!!

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by niki3350, Oct 14, 2010
Oh Huni

This is just how I feel but could not find words to express, Am going to get my family to sit read and digest and hope and pray it gets through, I need support but dont get it, dont get what I can and cant do anymore,

We dont look ill so everyone assumes we are ok or persistent moaners, I find now that silence is golden have given up trying to explain its not me its my stupid brain.

I curse the day that Chiari came and took my beautiful life away from me.

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by taylapj, Oct 14, 2010
Thanks Ladies do share it to people aswell, this was taken off a chiari blog a while ago, i cant and wont take credit for it, but the words are just amazingly perfect!!!!

Sometimes the people around us just need to see the words to digest just what is going on, hearing it often isn't enough, sometimes if some one is talking to me i really struggle to take in just what they mean, but if it's written it allows me to properly take it in, i mean i havnt always been ill i do remember what it's like to have people in my life who i think, oh get over it its not that bad theres worse people, I'm just sorry i ever had that attitude in the first place because when the shoes on the other foot you really need the support. I'm just big enough to admit the tables have turned.

Acceptance is the struggle for me now, and yep reading this still brings tears to my eyes xxxx

Avatar universal
by 1lizzy1, Oct 14, 2010
Hi  I have been having difficulty trying to get this illness into  perspective and to try and explain simply to my friends, but there's no easy way.  I shall remember these words to remind me that people can not see what's under the skin.

Avatar universal
by cookie5525, Oct 17, 2010
I want to say thank you for your post.  You have expressed everything that I would want to tell the people in my life very eloquently, and I will use some of your wording in a letter to let my family and friends know how I feel. You covered every area that needed to be addressed, all the difficulties that challenge us day to day. Only another person who lives with daily pain could empathize with how we feel and how much our lives have changed as a result.  I am still learning/struggling to accept (the hardest part) where I am right now and the frustration that goes along with having to want to do all the things you were once able to so easily do and no longer able to :(
Thanks again for writing this post.  It has helped me a lot and even made me cry...I hope that you are doing a little better each and every day. xxoo

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by taylapj, Oct 17, 2010
Thanks Cookie, that's so sweet.

I can not take credit for these words as i found it on Chiari blog, however the words are completely every thing we all want to scream. xx

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