I must stop saying thank you!: I noticed today that... - LUPUS UK

LUPUS UK

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I must stop saying thank you!

jonesy1 profile image
21 Replies

I noticed today that it doesn't matter how i feel, even if I feel dead on my feet, if someone says "oh you look good" or "you look better today" I always just say "thank you" and smile.

Why don't I say, "you must be joking" or "I must have looked awful when you last saw me", which is what I am really thinking, but no and I know I will just say "thank you" next time as well.

Sue

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jonesy1 profile image
jonesy1
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21 Replies
Sue2803 profile image
Sue2803

You are sooo right!!! lol. x

Binkey profile image
Binkey

I think we have all(or most of us)on Lupus Healthlock had this happen.You look so well,when actually you are feeling awful but,I said to a friend of mine,I would rather be told I look well than be told I look ill.It is strangely irritating though.

jonesy1 profile image
jonesy1 in reply to Binkey

I agree with you, if someone does tell me I look ill I am miffed because i try very hard to look my best. So they cant win really lol. My cousin said I looked good yesterday and when I did say that I felt really tired she added but you look better than you have for the last couple of weeks! So I must have been looking rough lol.

SueHughes profile image
SueHughes

Hi, I realise how you are feeling,I imagine all of us do on here.I also have had a rough week,my cat died and joints all flared up.I have just cried every day when eating breakfast and felt a lot better after.Keep going and being strong,we all have each other to moan at,Take care Sue.

jonesy1 profile image
jonesy1 in reply to SueHughes

I am so sorry about your cat, being a pet owner I know how devastating the loss of a loved pet can be. Take care. x x

SueHughes profile image
SueHughes in reply to jonesy1

Thanks so much,it was a hard decision to make,he was 25 and had a tumour in his neck.I just knew when he came in to me on Tuesday morning that it was time.We feel like a light has gone out.Our other cats are missing him,that is really sad to watch.Thanks for your understanding,Sue.x

SueHughes profile image
SueHughes

To be honest I feel a lot of people think oh she cant be that ill.Just because I put on a bit of makeup doesnt mean I feel great,I never feel great !! I dont intend to go around looking crap,I dont want peoples sympathy just understanding would ne a start.x

jonesy1 profile image
jonesy1 in reply to SueHughes

Understanding would be great and that is why i think I need to be a bit more honest with people because other wise they never fully take on board what it is like to be continuously exhausted to some degree all the time. i don't want to look crap but I would like to be understood but unless we educate them with honesty they will never have a chance to understand, if that makes sense. lol x x

Sheilainacton profile image
Sheilainacton in reply to jonesy1

totally agree with all the comments above- a friend with a chronic disease showed me this website- it is GREAT as she explains how it really feels- i sent it to all my friends + family so that they might understand:

butyoudontlooksick.com/arti...

pollyanna profile image
pollyanna

Hi, I agree from the comments i have read on here, (which I have to say makes me feel so good, as I now no I'm not mad or the only one with all this weird stuff happening) we all have this problem! However, yesterday I went to morrisons with my hubby (weekly trip out ) and bumped into someone I knew they said "oh how are you, you look so tired! " I said "thanks I'm having a good day" :( keep smiling :) take care x

jonesy1 profile image
jonesy1 in reply to pollyanna

We are not imagining how we feel we are just trying to keep up with all the new things it throws at us daily!

Sue x

Trace profile image
Trace

I agree with you Sue, I don't want anybodys symapthy or people feeling sorry for me.I find it very annoying when people say I look well & I reply by saying, "I feel awful" then theres that few seconds of silence & I can see them looking at me & I always think that they think, I'm making it up.

Also, very few people actually want to hear how I really feel & just want me to say "I'm fine" anyway

It's only our really true friends who actually try to understand how we feel.

jonesy1 profile image
jonesy1 in reply to Trace

It's during that silence I realise they have no idea of what it is like, feet of lead, ankles screaming and the desire to just sit down or fingers that wont open the ice cream carton I so desperately want as comfort food but I am lucky with my family and friends who do try to understand. So back to smiling and saying fine thanks.

Sue x

Jaxqueline profile image
Jaxqueline

I agree, I often think people think I am a hypocondriach, however when someone tells me I don't look well I feel worse so it is a no win situation!

Take care.

jonesy1 profile image
jonesy1 in reply to Jaxqueline

Yep, you can feel yourself sag a little bit more can't you lol.

Sue x

NeeNaw profile image
NeeNaw

takes too much energy to explain that you are not and so much easier to say thank you .......... sometimes I think people say this, not because we look good, but because they don't want to say you look awful, and put us on a big downer.

LaughItUp profile image
LaughItUp

Jonesy1 - like your post. Just so you know though - ice cdream is supposed to be one of the worst foods for us lupies, something I suspected a while ago but which was also confirmed recently. Sorry! xx

jonesy1 profile image
jonesy1 in reply to LaughItUp

Oh, why is icecream so bad? I am quite new to this and trying to learn as much as I can about lupus as I don't have a definate diagnosis at present but rheuny told my in September that she is almost certain that is what I have got so any info would be gratefully received. x

Hi

I think it depends on who I am talking to as to how I choose to answer when someone says I look good when really I'm feeling rubbish. I suppose I work on a "needs to know" basis. It sounds a little selfish, perhaps, but it really isn't going to make a lot of difference to me to educate the shop assistant down the local store, but a colleague at work might be a different story. Some people are very intuitive. My old boss became very adept at seeing through the rosey cheeks. He'd always spot it when I was in flare and he'd take the time to ask me if I was managing ok. xx

jonesy1 profile image
jonesy1 in reply to

I agree with chosing who to be honest with and I am also lucky with my work colleagues I work closely with. They can usually tell how I am especially when I go a lovely greyish white or my speech all comes out backwards i think I scare the life out of them sometimes lol x x

Yes, lack of cognition can give the game away lol

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