Shaken up. New news & bad timing.

[MiscellaneousAssortment]

I've written before about my fucked up (& mostly dead) family.

Mumsnetters helped me hold it together over Christmas. My dad died a year and a week ago. My sister died a few years ago and it's the anniversary of her death today.

I'm severely disabled, started to get ill 5 yrs ago.

The whole thing has been a living hell as my parents have shrouded all family history in mystery and silence. And deliberately lied about stuff that would have helped me and my sister, and my dad too. My mother has been particularly cruel and that's what my other thread was about.

Just had a call from a diagnostic service I gave a tissue sample to a few years ago when I got my first diagnosis. They've found a genetic abnormality which might mean I have something different from what I thought. It's in the same ballpark but from first glance it's more serious. I'd always hoped I had the mildest type of the original condition I was told I probably have. But this new one doesn't seem to have a benign type.

I don't know why I'm so shaken up. I knew everything was blurry and best guess as I have no access to my sister or fathers medical records.

She asked me if I could get my mother to give consent for them to access my dads post mortem. And they're hoping there was a saved tissue sample so they can run tests on it to see if he had the same genetic variation. It would help a lot in how my condition is managed and treated. And my little boy.

I will try and have asked them to send a letter explaining why they need access. But my mother won't. Just like I was blocked before. I really want to leave it all behind but I can't.

Oh god.

[PausingFlatly]

Hope you've not much longer to wait.

[MiscellaneousAssortment]

Was as bad as I thought. He obviously thought I was making a fuss and being annoying, and I couldn't stop crying and I kept shouting my name to make me stop and saying 'well what else can I do, what do you want?'

Ducking stupid to expect any kindness or compassion.

[PausingFlatly]

Oh Misc.

Get home safe, and take stock.

[MiscellaneousAssortment]

Can't go home yet in case DS is home, can't see me like this.

[PausingFlatly]

Oh no.

Would it help to debrief now? Or would you rather sit quietly and gather yourself?

[MiscellaneousAssortment]

I'm sitting sobbing and heaving in a car park backing on to people's back gardens and it appears to be a cut through so people are crossing over to avoid me.

I look and sound like a twat. Every time I get breathing more normal I then suddenly heave again and more howling stupid pathetic twat that I am

[PausingFlatly]

You poor thing. At least they're leaving you a bit of space.

Bit of distraction, ignore if it's making things worse...

What are you planning for dinner tonigh?

[PausingFlatly]

for when you get in.

[MiscellaneousAssortment]

Home. Evidence DS was here but they still out thank god (& nanny/helper, not 5yr old home alone).

Thank you. And sorry. Totally freaking out. Still dripping tears though sobs have mostly ish gone.

[PausingFlatly]

Very glad you're home and safe, and sobs have subsided. You'll be knackered shortly, I imagine.

Do you want to talk about it? Or better not just yet?

[MiscellaneousAssortment]

Yes, my head hurts, and throat actually. Bleugh. Fuck. I screwed it up :(

I need to not be crying as have work to do later / or waking up super early to do. Or bit of both.

GP and I were coming at the appointment from very different perspectives. And I couldn't reframe everything to make it fit within his expectations / needs / mood whatever. So I cried. Lots. And irritated the hell out of him. Which made me even more upset. I feel such a failure.

[PausingFlatly]

Ah, I know what you mean. Too much processing on the spot to try to get from what's in your head, to where he is.

[ThumbWitchesAbroad]

Oh Misc, I'm so sorry that you had another shit experience. Your GP seems to be unable to see past the end of his nose - I'm sure it was frustrating for him, but he must realise (or bloody well should!) that your LIFE is frustrating for YOU and you need help to deal with it!

Did you get nothing useful out of it? Like a med review? Or was he just a total waste of space?

Hope you're less whacked out by it all now.