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.

[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.

[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.

[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]

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]

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]

for when you get in.

[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?

[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]

Oh no.

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

[MiscellaneousAssortment]

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

[PausingFlatly]

Oh Misc.

Get home safe, and take stock.

[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]

Hope you've not much longer to wait.

[PausingFlatly]

Phrases for when you go in:
"Sorry, I think my courage has deserted me. But I prepared these"

[PausingFlatly]

Hang on in there. ((Misc))

[MiscellaneousAssortment]

I want to go home

[PausingFlatly]

He'll think you're trying really hard to keep it together in public.

You can even say, "I try really hard to keep it together in public but I'm really struggling."

[PausingFlatly]

No, of course he won't think you're putting anything on...

[MiscellaneousAssortment]

Sprightly that was supposed to say. Fuck. Now I'm all adrenalinny and shakey and he'll think I'm putting in on. Fuck. Shall I carry on trying to be 'normal' or shit I don't think I can...

[MiscellaneousAssortment]

Ok. Thanks. I'm here waiting room. Have copied out the 2 letter/ lists from you all.

Disaster as I couldn't open the door into GP reception and he was walking through and helped... And I had my bright & strighrly cover going on which means I'll look like I'm putting it on if I show the real me inside. Fuck fuck fuck

[PausingFlatly]

And what Thumb just said.

[PausingFlatly]

That letter Thumb drafted on Friday was asking for a med review, so if you sent that he's probably responding promptly to that - a sign he's taking you seriously.

I'm taking a wild guess here, but maybe what you need to discuss is what Thumb's letter said PLUS:

• that you're still reeling from the major revelations (you can mention without detail that you've had shocks in your personal life as well, so he understands you're under pressure)

• that right now you're just not up to pushing all the levers to make sure information is flowing properly between all your different HCPs and the right appointments being made in a timely fashion

• that you really need someone to take charge, co-ordinate and push things along. And that you need to know you can rely on that person to do this, after your long bad experiences of just being left to drift.

• if you think he's actually doing this, by all means thank him and add that because of your bad experiences, at the moment you still need explicit reassurance that this is happening.

[ThumbWitchesAbroad]

Misc - do I have to wield the kipper again? Write it down. Take the new diagnosis letter with you.
Write down what this new diagnosis means to you, as far as you know.
Tell the GP that this new diagnosis needs urgently addressing, in terms of drugs/therapy/testing etc. (WRITE IT DOWN)
WRITE EVERYTHING DOWN.

Then, if you freeze when you get there, or burst into tears (entirely understandable), you can just hand over the paper and he can jolly well read it.

But definitely take the new diagnosis letter in at the very least.



(((hugs))) - this is your chance to start things rolling. Please let go of any feelings of shame - you don't need them. Just write everything down that you feel is important NOW, so the GP doesn't miss anything.

Good luck, lovely - you can do it!

[PausingFlatly]

OK, what's the Thing you've been sending the urgent messages about? (Don't have to tell us, just be clear yourself.)

What would you like to ask or tell him about this?