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.

Damn forgot two other 'last 10 days' things...

Geneticists informed me they'd need access to PMs of my sister and father & any tissue samples kept to really narrow down me & DS condition and prognosis.

And the day after (14th), am informed the op I need is on permanent hold, no anaesthetist or nursing team will touch me with a barge pole... This op will stop the risk for more unscheduled illnesses & admissions. Kind of important as I have no one to take DS, but can schedule carers to stay shorter term and prebooked for the op. Now off the cards and the gambling back on.

Oh and my darling sisters birthday was last weekend. And her crush / best friend got married. Saw it on Fb, I wish I'd known before, she would have wanted me to say something, do something for him as she can't.

Oh and no one texted, called, emailed on any anniversary. It's been a lonely January.

Misc - I have no words at all. Just more (((hugs))) for you and and I really really hope that your carers sort their fucking attitudes out - perhaps the last one would like to swap places with you, would she, so she could see what it's like? Or perhaps she could just get the fuck over herself and have some compassion!

(OK, I had some words)

Thank you ThumbWitch, Pausing, TheModern and all.

You complete strangers on the internet are helping more than you could possibly know (sad really isn't it, if you think about it, which I'm not going to do)... Keeping me together when I fall apart each night. And I know you're giving really good advice which I'm not really responding to, just clinging on to this thread as the next bleugh and panic happens. I am noticing the advice though, and rereading bits when I can and slotting them in to my brain when it's 'open for business' as it were. My brain usually works well and I'm good at analyzing complicated situations and steering a course through. But I'm not coping with this situation at all. I have to grab snippets of logical thought in between the horror and white noises that keeps dominating my head. Probably doesn't help that of course I have to 'carry on as normal' for DS, so although you are getting the incoherent sobbing... It's not what's happening in rl, only when DS not anywhere near.

I'm so tired :(

I can't remember what I have to do now?

Trying to get it straight:
Mon:
Heart MRI - booked before Xmas. Haven't got hold of cardiologist who I want to do a much bigger MRI to see any circulatory damage, advised for new condition... But I guess should do this one anyway? Am taking sedation as stupidly scared of MRI claustrophobia... Dont take that kind of thing so no idea how will effect, or how with it I'll be/ able to drive scooter etc?
Plus:
Try to get hold of cardiologist again
Try GP again? Or give up? Don't know what to do.

Tuea: work stuff at home. Look at what the helpful consultant said and what needs doing?
Wed: counsellor appoint
Thurs: work meeting and travel. Bleugh.
Fri:? Work? Rest? HMRC? Collapse? Write timeline from that consultant appointment this week?

Oh just got a text from HMRC to say reminder to fill out tax form to avoid £100 fine. Fuck. I don't even know what the form is? Would it be for me as employee (with my part time working at home job I'm clinging onto like grim death), or for me as small business owner... Which is what paying carers ends up as.

Can I phone HMRC with no details to find out? I don't know where paperwork is, it's the last thing I've been thinking about...

HMRC should be able to work out who you are from your name and NI number, so with and the ref on the letter, you could at least call them.

It's possible you'll just have to write off a £100 fine as the cost of being ill. Not great financially, but if that's what happens DON'T STRESS about it. You're not a failure: you have additional costs because of disability and late payment fines are one of them.

I wouldn't bet on being able to drive a scooter safely after an MRI, especially with sedation. As damaging you or the scooter on the way home would be a BIG disaster, this trip might be worth a taxi (again, if finances allow).

I don't have a letter, the text was the first if heard of it, but does feel probable. Think you're right. Bye bye £100.

I want to just push it all away from me, out of my brain. But I can't. Need to do stuff first. Sigh.

Very sad I know, but am scared of the MRI tomorrow, least of my problems but can't 'get over myself'. Had a nasty experience whilst having a scan when first getting ill 5 yrs ago. Not horrendous or anything, compared to everything else, but has left me not ok.

I feel really crap and undeserving as I have too many problems and tragedies and special awfulness. And there's a limit to how much people care/ can listen to all the crap. So yes, one more pathetic failure to navigate life or stand up for self in the way every other person does naturally. One more pointless crisis. Ffs.

Hope I get through it tomorrow. I didn't a few years ago after the first awful time. Panicked and had to stop. The scan was too blurry for them to use. Complete failure.

Will be better than the other time anyway, as it will be loads shorter, and I'm taking carer with me who I need to brief to be my suspicious and over active guard dog basically! Have got a diazepam to take for the occasion too. But worried about that as need to be able to function to get to and from hospital on my scooter....

I don't know if you still have local tax offices over there, but when I had a real "WTF?" moment over my taxes I went into my local tax office and talked to the tax advisor there. I have to say I did laugh - when I explained my situation to him, he sat with his hands over his face, and then dragged them down in a complete "OMFG we've got a right one here" movement - but he did tell me what I needed to fill in (2 employment pages and 1 self employmentpage, it turned out).

But obviously that would involve you trying to get to said local tax office, even assuming it still exists; and then having to wait. Phoning them might be easier but expect to be on the phone for a while.

My niece has needed to have an MRI scan at least every year since she was 21mo, because she had a brain tumour - they sedated her every time up until last year when she was 10, and she first managed it without sedation. It's a scary thing, especially if you don't like the loud clanging and enclosed spaces.

Not sure how you'll be after the sedation - I was lightly sedated for a colonoscopy a couple of years ago and was fine after, but had to wait in the hospital for a few hours just to make sure I was ok and not going to have any reaction. I wasn't allowed to drive myself home.

Bit late for all this info probably but have only just seen your post, sorry.

Now look lady - you are fully entitled to feel as pathetic as you like, but you are NOT pathetic. You have a vicious and life limiting illness - you have already lost 2 members of your immediate family to it and it's damaging you daily - you are entitled (yes, again, sorry) to feel like shit and to be in a state over it. You really are. Please accept that you are allowed to feel the way you do, without beating yourself up about it. xx

Good grief, you're not failing to navigate life or do as well as an ordinary person.

You're dealing with a load many times greater than most people have to carry, doing it without the help from family many people have (their luck, not your demerit), and are doing so with intelligence, grace and courage.

From here you look like superwoman.

And I should add, superwoman is allowed to crash too, and have very bad days. Just getting through your day qualifies you as superhuman.

I thinking last night about something you said.

You were putting your own collarbone back in place at the age of five, and not "bothering" any grown-up because you'd be told off.

So of COURSE you now put on your coping-face for doctors, and indeed for work. You've been trained since you were tiny to conceal, minimise, cope and blame yourself.

Another lovely gift your mother has given you. And it's been standing between you and getting medical care ever since (alas aided and abetted by some less than ideal medics).

Your collapse in hospital last week turned out to be the best thing that could have happened, because that mask was ripped off in front of (luckily) the right people.

Not being ashamed of showing the true situation, and what it's doing to you, is something you'll have to learn from scratch, because your entire childhood was spent being taught the opposite.

Hope MRI goes well today.

Very good point, Pausing.
Misc, your mother's malign influence is still causing you grief, time to stop that. Imagine you had someone who actually cared about you, your health, your feelings, your happiness - and what you would say to them to ask for help, knowing that they would actually want and try to help.

Miscellaneous, ((hug))! I had not seen your posts recently, but I remember talking about your father and sister (and mine) this time last year. I just wanted to say how sorry I am that life is so very hard and uncertain for you. Anniversarys are difficult too- especially if there is no-one to quietly share it with.
I ran into trouble with a tax form I had no knowledge of, (possibly came while I was in hospital) after I became long term ill and the person I phoned at the tax office ( I was earning very little as I could not return to my previous contract) was very sympathetic, and I have not had a form to fill in since ( nor sadly earned enough to pay tax!). I think I was let off the fine too- although I rang before the deadline (31st Jan). I pay carers for my disabled son, but use a company specialising in carers paying their PAs etc so they do the paperwork mostly for me ( I only submit hours - they do the tax). The only complication is the new work place pensions rule - but my carer does not work enough hours for this to be compulsory, so you may be the same. If you have enough energy ring the helpline ASAP, but if not - breath, accept the fine and put it down to another illness expense.
I can't help with any of the other stuff, except to handhold. PALS can be helpful for support in medical appointments. There is a support organisation for families of children with genetic conditions without a name - I think it is called SWAN, but you might be better finding a specific group as it sounds like you know what your condition might be.
I am so sorry. Its so hard when you are in that in between situation of waiting - for results - for news- for help- for expertise- and it sounds like you are doing a lot of waiting!! Your mind must be a total whirl! (Hug) And yes I know its been years.
I think it is terrible that you were phoned up by genetics without support of any kind.
I would say try not to think too much - but I know that is difficult. (Been there myself) Its takes a while to adapt to a change in prognosis. I am sorry you have so little support and your carers are ill. I don't know where you live (useless brain of mine) but I know it is not near me ( so I can't be any practical help). Would it help to type a letter to your GP to ask them to organise the information needed from your families PMs?

Misc,

Feeling like you have just run into or indeed had been crushed by a load of concrete is a really good description. Sympathy, heaps.

Im sure you've had MRis before, but they are fine. Shut your eyes and think of England. I have them regularly.

Ring HMRC. You may or may not have to pay the £100 but they will understand. Ask them for advice on the carers. They are not evil people and will help if they can.

Keep these bits of email for your records. And contact your hospital PALs office, your situation has changed. Use these emails to explain. They may be able to help with the council and support.

And consider talking to your local councillor and MP. It will be far far cheaper to keep you and dc at home than an old people' home and foster. You are thinking minimum £70 k pa for the latter, imv.

If necessary think of writing to the local press, or threatening council with that.

People on health and legal boards can help you get the letters right.

And when you can, think of three nice things, and three nice things in the future. Not mega ones, little ones will do. Nice existing ones, the colour of your dc's eyes. That your collapse though embarrassing was brilliantly timed. That the team was helpful. Future ones, that you are going to have a cup of tea. That not all of the Christmas sweets have been eaten. That you are going to give yourself 20 mins to read a chapter of your new book.

It will help relax you. Sorry if this is all motherhood and apple pie.

I DID IT!!! I did it I did it I did it I did it!!!!

On way home now, but just wanted to share, I did it! I got through the MRI... And they were LOVELY.

I did it!!! Phew.

They really were so kind and skilled and patient.

MRI terror isn't reasonable and is definitely mountains out of molehill territory. Comes from bad experience 5 yrs ago with a back mri shortly before I was diagnosed the first time.

You know how I'm incredibly bad at making myself and my needs known? ... Well I did such a bad job that time that they actually forgot about me completely. Or at least I think that's what happened. Didn't chase it up at the time as was ashamed and embarrassed. When I'd been in the MRI for a while and it all kind of stopped, I pressed the alarm/ speaker handheld button thing and no one answered. Tried to remain calm but over the next few minutes I realized there really was nobody there, then the sodding lights went out (motion sensitive? Or switch for whole set of rooms?) anyway, was strapped in with Velcro bands and I couldn't move. I don't know how long I was like that, I estimate 20-30 mins which equates to about 15, 000 years in sheer panic. Didn't make a fuss afterwards, once someone heard my screams, as the guy wasn't kind or sympathetic, so I felt it was my fault somehow, like I did it wrong somehow, or it was fine really & just me being a coward. Never did see or hear the first person who started the MRI... Complete mystery what happened. But then of course every other bit of my life fell apart and this didn't seem like a big deal in comparison.

And am acutely aware you can only have so many horror stories without it sounding like you are bonkers and exaggerating, pick your battles wisely and all that.

So I tried to get over myself and didn't think about it again. I had a neck MRI a few years later. Which I found very difficult but nice and professional staff etc, so didn't make a big deal of my fear. But it was useless as it turned out I was shaking too much and the images were blurry. They were reordered & consultant blamed the imaging dept as he'd had bad ones from them before. I feel a worm as I just sat there and let him and it really wasn't them. I'm such a wuss I didn't ever go back.

Fast forwards to now and I am so chuffed I did it properly and it was all ok!!!

And I managed even though I had been told it would only take 10-15 mins, and would be a quick in and out one. Whereas it took an hour, and needed to do contrast dye w cannula. And the breathing/ stopping things really hard as I normally breathe very shallowly as intercostal ribs and back, clavicle etc hurt too much. So things that could have floored me but didn't (yay!). They said the images were crystal clear and I didn't get in the way of them doing the scan properly. :)

I blame you all for making it different today. He's hee. Partly from the counselling and me trying to do things differently, and partly from these threads, I decided to tell people about my fear and show them too, and ask for help.

So I asked my nicest carer to come with me, had got 2 doses of diazepam from GP ready to take, plus lowering blood pressure drugs. And I asked for help when I got there and explained my fears. Was completely up front and said how I know I can't be rational about it and im really really scared. And they were AMAZING.

Carer sat in with me. Held my foot and waved lots. They put a mirror up so I could see out of the hideous white coffin - I mean MRI machine... So I could see carers face, and the window where the radiologist was, and another so I could see the airy gap at the head end. They helped put pillows and ice packs and wedges around to prop me up and minimize soft tissue damage. And moved stuff around so my hands were free and not strapped into the Velcro. And they pulled me straight out when they saw my heart rate shoot up, they just rushed in and didn't even ask me how I was as they said they could see my face in the mirror as soon as they came in even though I was way before the point at which id have asked for help.

And they didn't tell me off when the vein splatted with the cannula (which I'm used to happening, crappy veins), they actually apologized to me for it happening! Crazy!

And my carer didn't instantly lose all respect for me! She held my hand when I got scared in the machine. And grabbed their attention when the tubes got stuck in the moving platform bit and were pulling my neck.

Basically, I admitted I am a coward and a wuss and they helped me so much and I did it. And they didn't treat me like I was wasting their time or being crap.

One small step for Magnetic Resonance Imaging... One giant leap for MiscellaneousAssortment.

Quick hoo-RAH amid dinner-making.

Well fabby, tears to eyes moment,

You can do it. Hooray!!!! Hoorah for Misc!!!!!. Three cheers !!!!

Openness about how crap things are , in a reasonable manner, you will have them coming to hand.

Onwards and upwards, gel! Superstar!

Thank you mwah to you and mesh to you :)

Oh and, errr, did I mention ... I DID IT!

Glories in small victories.
It's nice to have something not utterly dooming to share, x

Oh that was supposed to say "mwah to you and mwah to you" don't know where mesh comes into it...

Mwah mwah and hugs all round, and mesh is what happened on a previous occasion...

You Did It !

So delighted to read of today's victory, you are amazing!

I totally get the fear, I have issues with a particular type of medical examination and end up traumatised and in tears every bloody time. Hopefully one day I'll be able to get through it like normal people- you've given me hope

Misc - you are ACE! Well done, oh SO well done for telling them and asking for the help you needed - and LOOK how well it turned out!! SO much better.

Now I'm hoping that all that positive reinforcement (showing that you have a weakness and asking for help and GETTING IT) will mean that next time you'll use the same technique, and keep asking for the help you need.

Oh YAY, I'm so proud of you!

Just had to read this again, so pleased.

They can never get the cannula into my veins easily. Best so far has been five attempts.

And on one occasion I had to get them to retrieve me to be sick as I didn't want to mess up the machine.

But I've never been abandoned. Well done so much for this time.

Someone keeps calling me at 930am for the past two days, number unavailable. I'm too scared to answer. Think it must be health related. I'm being v stupid I know :(

What do you want us to say, misc? Agree with you? Yes, you are being a bit silly, there's NO point sticking your head in the sand. Answer the phone! It might be something completely different, or it might not - but either way you're making yourself more anxious by NOT answering it than you would if you actually found out who it was. :)

I've had repeated calls recently from those damn Microsoft/Talk Talk scammers, number unavailable, despite being on the Telephone Preference Service.

It might be them; it might be something medical; it might be something else entirely; whichever, I agree with Thumb that NOT answering is also hurting you. I'll try to be on MN by 9:30 am tomorrow in case you need a (hug).

And have one now anyway ((Misc))