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Original poster

Feeling really down today

33 replies

KatyMac · 02/07/2010 21:21

It's been 18 weeks since DD lost her sight

That's months

For something so temporary it would be gone by teatime

Sigh

I feel a bit of a fraud on here as DD's problem (if they are right) is only temporary but as someone once pointed "out other people having problems don't make yours go away" which I agree with but they do give you perspective

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Lougle · 02/07/2010 21:48

KatyMac, you have every right to be here. And until your DD's sight is restored, it is permanent, isn't it? No one can tell you when she will see again.

How is she doing? Is she gaining any confidence?

Lougle · 02/07/2010 21:49

And I forgot to say, sorry. I am sorry it is so hard. It's funny how it hits you, isn't it?

TheArsenicCupCake · 02/07/2010 21:49

< big hug and a wedge of cake>

have they actually decided what has caused this to happen yet. ( sorry if you've already posted this and I'm not upto date).

I was telling dh about you and dd.. His reply " that so f*ing unfair!"
I know it doesn't help you.. But our thoughts really are with you. X

Original poster
KatyMac · 02/07/2010 22:05

She is getting worse - her balance, her co-ordination, her confidence - it seems so quick - Happy, strong, centred, balanced to placid, withdrawn, solitary, accepting

They say it's psychological but I'm not sure - am I being unfair looking for a physiological cause

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Lougle · 02/07/2010 22:07

KatyMac, you are being her champion

MrsYamada · 02/07/2010 22:40

I haven't posted on any of your threads before but I've read enough to know it is perfectly understandable that you feel down. It's not unfair of you to look for a phsyiological cause either, that would give you a reason and more idea what you are dealing with. Most of us are dealing with special needs that have always been there, whereas this has been sudden, we have had time to grow with it, whereas you have been chucked in at the deep end - it's no wonder you are having a down day. I hope there is some improvement soon and I think you are handling things really well. Take care.

Original poster
KatyMac · 03/07/2010 07:31

Well I guess I expected it to be over to have 'come to terms' with it by now

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sarah293 · 03/07/2010 07:50

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Original poster
KatyMac · 03/07/2010 08:00

Oh, umm, OK

You see so many people are telling me what I am doing is daft/ridiculous/bizarre - I have a diagnosis & I should just accept it

What you say Riven is what I feel, but I keep being told I shouldn't feel like that

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sarah293 · 03/07/2010 08:13

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Original poster
KatyMac · 03/07/2010 08:36

Thanks again Riven (I seem to say that a lot)

I suppose my "soon-to-be counsellor" might see MN as some sort of 'enabler' providing 'validation' for my irrational feelings

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TotalChaos · 03/07/2010 08:46

completely agree with Riven - I'ld want every conventional medical avenue/investigation done to rule out a physical cause if it were my child. To my mind this conversion disorder diagnosis is a bit like an IBS diagnosis - in that it's more a diagnosis by exclusion iyswim...It's not like they did a blood test or x-ray and that ticked all the boxes...

Original poster
KatyMac · 03/07/2010 09:55

That's it TotalChaos - when my IBS was diagnosed I had a fairly uncomfortable procedure & an appointment with a consultant.

When I meet someone with IBS diagnosed in the last 5 years or so 'The GP said so'

Maybe it's a cost cutting exercise

I'm glad I have the tests I had and maybe the 'scientist' in me wants similar "proof" for DD

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Original poster
KatyMac · 03/07/2010 10:14

Maybe my inability to 'move on' from the stage we are at diagnostically is a result of a subconscious/unconscious belief that they are right.

I don't think it is but I am stagnating atm

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sarah293 · 03/07/2010 10:44

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cory · 03/07/2010 11:11

"Maybe my inability to 'move on' from the stage we are at diagnostically is a result of a subconscious/unconscious belief that they are right."

Or maybe it is simple logic that you cannot move anywhere until you know that they are right!

Original poster
KatyMac · 03/07/2010 12:25

I hope I have done some of the grieving & hopefully talking it through on here will help with the trauma

Lack of action is inevitable, I guess, without a cause to take action against

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justaboutblowingbubbles · 03/07/2010 13:26

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Original poster
KatyMac · 03/07/2010 18:37

I really don't know

She has had a wonderful day today - dancing, sailing and then the arrival of her bike

It just seems so wrong somehow

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LollipopViolet · 03/07/2010 19:11

Katy, you are NOT a fraud. Say it again and I'll follow Riven round and hit you with a cuddly toy (I don't want to hurt you lol!).

You seem like an awesome mum and your DD is lucky to have someone so supportive around her. Keep talking, it'll help. Also, it might not be what you want to hear, but the RNIB has a WONDERFUL forum, for those born with sight problems and who develop them, and you might find some great company over there, there's a section for parents as well as one for teens. I'm on there myself.

Original poster
KatyMac · 04/07/2010 08:39

Thanks

I do look occasionally at RNIB but it isn't where I want to be which causes some conflict in me plus this is supposed to be temporary so it seems insensitive (more so than on MN)

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roundthebend4 · 04/07/2010 10:07

If I was in same situation as you I to would demand that they rule out physical causes and if they not tested for them WTF they doing ruling them out

claw3 · 04/07/2010 10:45

Katymac, if it makes you feel any better, lots of people are made to feel "daft/ridiculous/bizarre"

School were telling all outside agencies there was nothing wrong with ds and i was the one with the problem. They even wrote on his school file that i was an "over anxious woman, who would require careful handling"

Paeds were telling me "there is no way your ds is autistic"

The fact is these people were not specialists, they didnt know or understand the first thing about ASD. I spent years being referred to the 'wrong' experts. The minute i was referred to the 'right' experts, it was as plain as the nose on your face that ds WAS autistic and i wasnt some bizarre woman.

Keep fighting for your DD and dont believe everything you are told.

meltedmarsbars · 04/07/2010 12:12

You are definitely not a fraud! (passes more fish to Riven - slightly whiffy ones as I am a day late onto the thread)

Your dd's problems are real. I see this board as a place of welcome and sensitivity and vast expertise.

Coming to terms with a child's difficulties takes decades, not weeks. Don't rush yourself and do accept every offer of help - even if you put the offer in some "yes, thank you, I'll call you and take you up on that one day" compartment.

I can understand why you don't want to go on the RNIB - does it make it seem more permanent?

Original poster
KatyMac · 04/07/2010 15:09

It's so bizarre about 75% of the people I meet/speak to /communicate with think I am a 'good mum' to search for an alternate diagnosis/cure & the others think I am a 'bad mum' for not accepting that the specialist is right

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