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I shouldn't grumble, but......

I know people mean well, and as it is nine years since my diagnosis I should be used to it, but I get really p’d off with people asking me if I’m alright. I’m pretty sure they don’t actually want to know which bit of my body has let me down and how, so I smile and say I’m fine thanks. Actually I’d much rather snarl at them and say, “No, of course I’m not alright, I have MS, it’s incurable, untreatable and progressive, so how do you think I am?”

xx

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This is a real: “Hurts either way” one. I don’t feel anyone ever asks how I am, and that’s not very nice either.

But I suppose “How are you?” is at least a more open question than: “Are you alright?”, which does invite the response: “Of course not, I’m seriously ill! What did you think?”

In fact (the Devil made me do it!) I have more or less answered the latter to a so-called “friend” who apparently dreamt I’d died, and had the cheek to tell me so, and want to check I was alright. I know MS isn’t usually a killer, but I can’t say it’s never occurred to me I might die of it, even if that day is a very long way away. I’m sure, if we’re honest, many of us have had the same thought.

So I really wonder where someone’s commonsense is, if they contact a friend they know is seriously ill, about premonitions they had died. Do they think that is in no way upsetting or disconcerting (and I’m NOT a superstitious person)? I think she should have kept her damn dreams to herself - an ill person doesn’t need to hear about that.

So I’m afraid she got rather short shrift about: “No, of course I’m not ‘alright’, but I’m not actually dead, OK?”

She didn’t get a birthday card this year - sick of it!

Tina

x

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hiya

hows about the brief truth? an example that works for me-physically f***ed but mentally good thanks!

(to be adapted to your own situation obviously!)

if we fib (cos its easier) how will folk ever learn/realise how difficult life is?

take care of you, ellie x

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Hi all tell you what makes me mad “you look well” & “youve done well up to now” how would they know!!! We dont need to wear a badge do we? What should it read "im fine today, but felt like s*** yesterday!!! Think everyone expects us to jibbering wrecks in a corner, & as for I dreamt you died, that doesnt deserve an answer Tina, the horrible bitch!!! Tracey x

Hi Tracey,

The strange thing is, she’s not actually horrible - she’s the softest-hearted person you can imagine. I think she’s just rather childlike, and doesn’t think!

It just didn’t occur to her that telling a sick person you were afraid they might have died could scare them, too! It’s like dealing with an eight-year-old. She hasn’t sat there and thought: “Tina’s ill, and might very well be afraid of dying - it’s best I keep that one to myself.” She’s thought: “Oh dear, I’d better check!”

Tina

x

thank you all for some excellent + insightful answers to that that so common question ‘how are you?’ - my reply usually is: excellent, swam my 20 length, done the shopping and oh, I am so sorry, forgot the tea and how could I forget the loo roll and was it really 20 lengths?..and you could you help me with the stairs? - PLEASE!!! the most common reply I get: 'don’t say sorry!

Thee woman who checked that you are still living , made me remember a ‘friend’ who met me recently and said you are looking better than i thought you would be, guess what the friend does for a living

she is a doctor

trish, you just have to laugh

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Hi Tina, sorry for sounding so miffed before, I’m just getting fed up with people who don’t think before they speak. Seems to be either avoiding the conversation about the " dreaded ms malarky" or they have so many cures & such & such had that & they were very bad with it & blah, blah bloody blah, would rather they said nowt at all to be honest, my hubbys auntie, god love her, wants to know about all my meds, am I sure I should be doing this, that & the other! I know they probably dont mean to be so blunt, but I even try to avoid them now cos its always the same conversation!!! Tracey x

Don’t worry, Tracey, I’m not sure why I came across like I’m trying to defend her, really. I accept it’s not malicious, but this is just the latest in a long list of thoughtless and disappointing things, going right back to when I’d first been diagnosed with brain lesions, and she said: “Oh, but you mustn’t worry, I’m sure it’s nothing!” How could lesions in my brain be: “nothing”?

You see what I mean about childlike? I’m sure there’s no malice in it, and she thought she was supporting me by being positive, but it seemed to me like denying the bleedin’ obvious - there was me, needing a bit of support, and she’s denying there’s anything wrong, and saying it’s nothing. I knew by then it definitely wasn’t nothing, even if it didn’t turn out to be MS. My neuro was down to that or a couple of worse things, so short of finding he’d been looking at the wrong scans, I wasn’t ever going to find out I had “nothing”. Just an absurd thing to say.

Then when I finally got diagnosed, she promised she was always there for me, and so I asked to see her, and she offered a date in six weeks time! We were supposedly “best” friends, back then, although she doesn’t live nearby. But I should have seen the writing on the wall when someone’s “best” friend is diagnosed with life-changing illness, but she can’t find a spare day for six weeks. If it had been the other way around, I’m sure I’d have said: “If I can clear it with the boss, I’ll be there tomorrow or the day after.” Not: “Hmmm, I’ll check the diary. I see there’s a slot in six weeks?”

When we finally did meet, she was surprised I wore nice clothes and makeup, and didn’t look suitably ill enough! And when, less than two years later, I lost my job of 23 years (unrelated, but another blow), she asked if I’d had a nice summer! Yeah, just great - I’m on my own, seriously ill and now have no job - how much nicer can it get? Then, recently, we had the: “Dreamt you’d died.”

I’ve just found myself storing up resentment over all this, and had to conclude she either isn’t my friend, or is really thick. Even assuming it’s the latter, and she can’t help it, it’s not something I feel able to deal with. I’m needing support, and instead getting someone who babbles on about: “Have you had a lovely summer?” after I’ve just lost my job, and asks: “Are you alright, 'cos I had a terrible dream you’d died!”

Talk about sublime to ridiculous! “Are you having a lovely time?” to: “Just checking you’re not dead.” Neither is at all helpful. And I’m sorry for diverting this thread, but the: “Annoying stuff people say” theme always calls her to mind - for obvious reasons.

Tina

x

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With you all on this one. Tina what an insensitive wally that “friend” was.

I am sick of being told I’m being brave, I didn’t choose to be in this situation and don’t see what’s brave about choosing to try to adapt and live my life. Not sure they would be saying it if they saw my ramblings on here.

Someone else said well if someone had to get it at least you are a strong woman who will fight it? Love to know their rational for that I think it was meant to be a compliment.

Loads of people telling me I look so well, how are we meant to look?

Also if one more person tells me they have read about someone who is on a DMD and doing really well. Great but I don’t qualify at the moment and my Consultant thinks I have a progressive form.

The tricky thing is it’s usually well meaning Colleagues and friends and actually telling the truth just makes them look wounded no matter how you tell it which makes me feel bad.

Snowqueen x

Oh Tina, how horrible to be honest, you seem such a nice person, much more patient then me! sorry to say it but i would have smacked her 1!!! She sounds so conceited, trust me she’s no friend," all about me"springs to mind. You’d be better off without her, ignorant so & so!!! Tracey x

Snowqueen, Ive got 2 heads, horns & a tail, & a badge that says unclean, thought we all looked like this!!! Tracey x