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]

Yes, you need to write it down - timeline is an excellent idea there from Pausing - write it all down! A
And you know what, it won't hurt you to break down in front of the consultant - you've spent entirely too long looking too "together" so an utter snotfest meltdown might make them realise that, actually, you're NOT coping at all!

Do it. Take tissues. And your written timeline and questions.

[MiscellaneousAssortment]

Packing tissues now. Printer broke before thread printed out but did get some of the letters copied as the 'oh I don't have them' thing really doesn't help

[ThumbWitchesAbroad]

Bloody printer! Do you have smartphone? You could always show the thread to your consultant.

[PausingFlatly]

Printer Arrrgh!

Good luck.

[MiscellaneousAssortment]

Well I'm alive. And so is the consultant - resisted urge to bash over head with a frying pan. Partly because there are not too many frying pans to hand in outpatients departments.

I wrote timeline by hand which was very helpful thing to do, for myself if not for this appointment exactly - she didn't want it as hand written :(

I now realise I didn't find out anything about the new syndrome, as there was so much info to download to her. Ffs.

[PausingFlatly]

So curate's egg this time round.

Do you have another appointment booked?

By the way, not accepting your handwritten timeline is a perfect excuse to write it up and send it to her secretary. Recorded delivery or email receipt, natch.

[PausingFlatly]

But it SUCKS that you're having to do so much admin and manage them, while so unwell.

[MiscellaneousAssortment]

Think you have a good idea there Pausing thank you x

I will type it up when I can, probably next week now. But at least I've still got it handwritten as have another appointment tomorrow afternoon.

It's a first outpatients one, which I've been waiting for for a long time, but actually now is probably going to be a washout... Basically was diagnosed with a second condition ages ago through an in patient testing thingy, and then they said I was a good candidate for a medication but they never actually prescribed it and I didn't have the energy or strength to push it, so there it stopped until another consultant set up another referral for it at a closer hospital for me...

Was going to be an 'easy' appointment saying 'yup the main specialists said x and suggested I take x, so can that happen please if you agree...'

But the drug raises blood pressure. And new condition that's a massive no-no, and my low blood pressure may well turn out to be the saving of this whole awful situation. I should in theory have loads of artery/ blood vessel damage by now. I'm making massive leaps here but my today's reason to hope I'm not going to die is - has one of the problems of the last few years unknowingly protected me?

I actually just thought of that and am slightly proud of self for coming up with that!

I think I need stuff like that to cling onto at the moment - though I know I'm building a house of cards really as I just don't know really....

Humm slightly spoilt by my blood pressure being v high at last week appointment (pre genetics phone call). It was 150/?? Lying down. Bugger it's pointless without the second number isn't it?

Ffs. Driving self in circles. Pah.

[Themodernuriahheep]

Misc, well survived! And did you feel a bit more in control? Less done to? From what you say, your consultant sounds a bit non plussed, well done. And emailing the timeline with a receive read tag on it will mean that you will always have it to hand to resend " if it gets mislaid".

Blood pressure is a mystery, they have now recognised white coat syndrome. For years my DM was telling them her blood pressure was high but ok, but went though the roof ( think 210/145) when she saw a Dr. So yours may be ok at home.

May I suggest that you email the consultant with what you agreed as well as the time sequence? I know one would normally want to wait for her letter, but given time lapses and the need to keep your other medics in the loop, I'd email her saying dear Dr s, thank you for seeing me today. As I am seeing a number of people in the near future I thought I would create an aide memoire for me to give them as background. We discussed ... We agreed... ..I still gave the following queries... I attach the time sequence as agreed. Many thanks again, Misc.

Then you turn up with spare copies (sigh), having emailed it all first, to any appointment with anyone. You are then not at the mercy of typists or filing to get things moving. I had to do this with DS, and also me, constantly.

[ThumbWitchesAbroad]

Glad you survived the appt, misc! Next time, maybe take a small frying pan with you, a handbag sized one?

Stupid woman refusing to accept your handwritten timeline! But at least you still have it, so as has been said, type it up when you can, email it to her, copy it to the secretary and EVERY OTHER BUGGER you can think of. INcluding your GP.

Maybe you can use your outpatient appt to get more info on the current situation? Whatever, even if they prescribe the meds, you don't have to take them of course! Sounds like it could be quite dangerous if you did

[MiscellaneousAssortment]

Terrible 24 hrs, no sleep as worked through the night to finish as the late notice appoint ate up all my time to meet deadline. I feel very weird and shakey scattered brain cells desperately trying to ignore message for body. Went straight from client meeting to another hosp appointment arrived late and kind of collapsed. Ahem. Embarrassing. They were v nice. I just got home now.

Owwweewweeeeewwwww. God. Ow. Hell.

[Themodernuriahheep]

Sorry and not sorry about the collapse, note it down. It adds to your evidence of what living is like for you.

But hope you can relax a little more now.

[PausingFlatly]

Oh poor you.

What uriah said about the collapse though. Hope you can have a few days "off" now.

[MiscellaneousAssortment]

Good lord I feel ill :(

Note to self: choose something more fun when going off the rails. Next time it should involve more alcohol!

What the hell was I thinking?

Carer calls in sick on Monday, last min hospital appoint on tues, work through the night tues to wed, before schlepping to client meeting on wed lunchtime an hour away working in the care en route , when I can't sit up in transport without doing damage to neck (plus disguised as a normal human, so stick not scooter, heavy bag w laptop, makeup etc) before a 2 hr trip of hell to try to make a hospital appointment via picking up scooter, ice packs etc, get to hospital. Freak out and collapse in a really public waiting room.

Learning for self: what the f happened to pacing and caring for self, when you've just been told you probably have a condition in which his blood pressure can kill. Very ducking sensible huh?

Doc & nurses were so nice. Spent from 4 til 7:30pm trying to get me not fading in and out of fainting v shaking and throwing up, and getting my blood pressure down and piecing together what the hell was happening... They even went online to look up the new condition, but with a medical background was so helpful as they helped me understand it more and prioritise all the stuff and what I need to do first.

They also worked through how the new info changes the way they need to handle the thing I was actually going to see them about. And instead of just saying 'nope can't put you on what we thought we would so bye bye' they reviewed alll my medications and came up with adjustments and a new one and again lots of advice and a plan.

Very much beyond the bounds of and all that...

And met eyes when they thought I wasn't looking when asking me about the genetics call and the lack of care or follow up help... Made me feel a bit better about it actually, if other hcp are raising eyebrows at the way it's happening.

I'm so pathetic. And embarrassed. Hysterical crazy woman. And I feel like I just ran into a big lump of concrete.

[PausingFlatly]

Wow! That sounds like one of the most constructive meetings you've had for a very, very long time.

Amazing the difference between them seeing your best, pasted-on, coping face and a tiny glimpse of what you're really going through.

Sorry you must be in so much pain right now, and for the last few days.

[ThumbWitchesAbroad]

"I'm so pathetic. And embarrassed. Hysterical crazy woman."

misc - you really need to re-evaluate what happened in a positive light. Your negativity about your collapse is what will prevent you from telling people just how bad your condition truly is. The collapse was positively serendipitous - look what it achieved for you! Doctors listening, looking stuff up, realising that they could do stuff differently, changing your meds to be more appropriate for your "new" condition - amazing! AMAZING!
And NONE of that would have happened if you'd done your usual "I'm ok really" thing, they would have just carried on as they always do, and waved you on your way in a probably even worse state than before.

Your collapse worked WONDERS! It was a GOOD THING!
STOP trying to be too strong and pretend you're ok. ACCEPT that you need the help and TAKE IT. Showing that you're genuinely in trouble HELPS.

(Yes I'm shouting again. Yes I know I'm being a touch abrasive - you need to accept that you had a LUCKY day today and stop viewing it as being a bad thing, it was GREAT!)
for you xx

[ThumbWitchesAbroad]

But yes, sorry about the pain and concrete-block-feeling. Not good. But overall a positive day.

[MiscellaneousAssortment]

Carer texted in sick at midnight last night. And I was saying to myself 'oh god twice in one week, what hideous timing' and trying to cope when a third carer has texted in response to my 'can anyone help today' email with a self absorbed text all about how she's ill too and it's not fair if she's left with more to do just because others have been off before her, and she'll come in tomorrow but won't be doing any tasks other than turning up. Oh and if I do 'make her' do anything else she won't come in.

I want to scream HOW FUCKING DARE YOU ALL YOU SELFISH FUCKING BASTARDS. I'm fucking falling apart and probably DYING and all you bastards can do is whine about having a COLD and being childish fucking bitches. And if does come down to if I 'overdo' it now, I risk doing permanent damage to arteries (heart rate/ blood pressure etc), which is a lottery, might kill me on the spot, might kill me later or when in surgery.

But noooo, i can't complain or tell them that's what is the reality, as they'll whine that it makes them feel 'too responsible' (been said before over much much lower stakes. I can't sugar coat it, there's a simple cause and effect. And yes, it's hard, but that's the reality.

But I can't say anything as it's no one taking the piss as such, it's 3 different people being ill, and I do thing they (except the last one) aren't pulling a sickie.

(or I suspect it's 1.5 people actually ill, 0.5 being inconsiderate and the other 1 being a whiny selfish bitch who sees herself as the suffering martyr who always gets dumped on so is 'getting in first' because everyone else gets to have a day off why shouldn't she...)

How can I protect myself? This is dreadful. And I've used all my emergency support and I have nothing left.

I can't carry on with this level of unreliability. And I'm very aware that this has never happened before, but at times when I am collapsing (like when my dad died), people that work for me really push back and basically 'act out' until life goes back to normal... With me able to be their boss and them be 'managed' and sheltered from any of the reality.

And before anyone says the usual 'ask the agency, get the council to help'. There is no agency, and the council absolutely will not help. I've checked this out before. The only help they are legally obliged to do is to put me in an old people home (am in my 30s), and my child in foster care.

So I need to make the carer situation work better for me than it is right now.

[PausingFlatly]

Oh no!

[GiddyGiddyGoat]

I've only read this thread op, so forgive me if I don't know lots of important bits about your history and difficulties. It sounds like you are having to deal with an awful lot and your health problems sound extremely worrying and complicated. What I wanted to say though - and I really do mean this kindly - is that you sound very very angry and that must be taking up an awful lort of your limited energy and resources, without necessarily being helpful in getting you what you need. Have you ever had / asked for / thought about some therapy? It might help you you know and it sounds like you could do with a non judgmental professional who would listen and try to help you make sense of all this. Just an idea.

[MiscellaneousAssortment]

My counsellor says I'm not angry enough actually giddy :)

Though I am angry and hurt today, I can't cope trying to get through the continuing awfulness if I can't rely on basic care I need for me & DS to survive.

[PausingFlatly]

IIUC the OP has used therapy, Giddy. But some of the revelations about really big stuff are very, very recent, and have a major impact on how she has to proceed.

So there's an enormous amount to process.

And at the moment, I think finally getting angry for a while is going to help her. She's put up with far too much, for far too long, and it's allowed people to always put her needs last.

[MiscellaneousAssortment]

God Pausing, you're right. I mean, you're right lots of course! But I just realized, you're right how everything's happened so very very recently. Feels like about a year has happened since start of my first related thread December ...


DECEMBER:
Christmas prompts me having to deal with...

1. My fathers death in horrific traumatizing (man made, or should I say woman made) circumstances. 12 months ago.
   
2. Realization of 'the family secret' that id been told in August but buried til December, which cast everything in a different light: was going to write 'found out' but that imply some desire to know or seeking it. Hell no. Complete side blow. So, 6mths or 1 month depending if you go from the firing out or the realization dawning...
   
3. Seeing my mother (1st time since funeral I think?) at Xmas, and the realization that I was pushed too far to even play by the abusive family rules I was habituated to. I guess I found out where my line was. Waaaaay to far away that line was, I guess I thought it would never come...
   
4. 1st jan. first anniversary dad dies.
   
5. Have pre assessment for op I need, told they won't do it unless x number heart tests needed ... A shock a anyway as I'm the one desperately trying to get anyone to take me seriously
   
6. 13th jan. anniversary of sister dying. And a jolly call from the genetics lab who not heard from for FIVE YEARS, to say I don't have the condition we thought, in all likelihood have got a much worse one oh and the av age of death is TWO YEARS YOUNGER THAN ME. On borrowed time, literally I guess.
   

... Last week and a half has been a desperate scrabble to info find, take stock of what I have to do:
Try and find the right consultant existing? But now new too?
Try and get a message / appointment to my GP - 4 messages, no call back. I guess I'm really on my own with this.
Chase consultants leaving messages, begging anyone to help me. No contact w cardiac specialist yet: and no tests scheduled.
A will, end of life instructions? instructions for my DS when/ if I die leaving him with no one, and get the legalities in place),

... All whilst carrying on living (severely disabled and reliant on carers), working, existing and new hospital appointments... What working out the implications and changes to drugs, secondary conditions... DS. DS. Everything,

Whilst DS goes back to school and copes with Xmas come down and normal 'needs his mummy' stuff.

And carers keeping on being ill and calling in sick, my scooter getting drenched and electrics screwed (only mode of independent transport)... Relying on carers means just that. I can survive half a day without carers, if everything's been preprepared & I've scheduled in a week of recuperation and 2 additional weeks of reduced activities. Not 2 full days within 6 days of each other and 1 threatening for tomorrow (though she has form for pulling shit like this, kicking up when I'm ill, and positioning self as martyr icing up for other carers, which isn't actually true - when life wasn't this unrelenting hell, I was hoping to find a replacement, but hey, where does this come in the list?! Somewhere in between A. find out if I'm dying and B. Keeping job long enough for DS to get small payout of I die, as no normal life insurance is valid.

Oh and finding out my blood pressure is dangerously high let alone for someone with a compromised blood vessels and pretty much death warrant (date not filled in) of dying through aneurysms... And on wed the out patients doc & nurses helping for the first time anyone helping me. But more info..., I'm reeling. And distraught. Anger isn't getting much of a look in...

Yup. I think I've got through enough for a lifetime. Not to mention any of the awfulness of the last 5 yrs, or historical.

Jesus Christ.

[PausingFlatly]

Very, very gentle cyberhugs that don't bruise anything.