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Spoonies... friendly support for anyone with chronic pain & fatigue

(302 Posts)
Grockle Thu 10-Apr-14 21:47:55

A lovely, supportive thread for those of us suffering with a range of illnesses & syndromes that cause chronic pain & fatigue, amongst many other things.

Lots of advice shared but also a place to chat & laugh with people who understand.

Spoon Theory Here

Old thread

MiscellaneousAssortment Tue 16-Dec-14 15:17:02

New dribble of news, aparently the thoracic surgeon took one look at him and said 'I see no signs of eds, you obviously don't have it' and talked about potentially marfans instead (which the whole family was tested for and was absolutely ruled out many many years ago). My mother told me this with glee.

So a surgeon who's not a specialist in any way at eds has confirmed what they want to believe, and quite possibly his recovery will be confused by this as eds people heal so differently sad

Jesus, who would be so fucking disturbed that they'd rather he died than face up to a factual diagnosis?

I can't deal with this at all.

ItIsntJustAPhase Tue 16-Dec-14 07:10:34

Misc you don't sound like a bitch at all. Your mum sounds like a piece of work. How is your dad? Is there any way you could speak to his GP to tell them your diagnosis so they are more fully informed? They won't discuss him with you, maybe, but they can have more info. B

MiscellaneousAssortment Mon 15-Dec-14 23:21:13

So I'm a bitch, shouted at my mother. I feel horrible sad

She left me til 9pm with no news again after promising faithfully she understood how awful it was the day before and she'd personally make sure it never happened again. I feel like a fucking idiot for believing her and a fucking idiot for breaking and letting rip at her. Though I know I had provocation, not nice.

She still hasn't lifted the hospitals refusal to speak to me so I had another 14 hrs or so of news blackout. I find out a bit through my next door neighbors daughter, but it was incredibly awful, rooting round for scraps of info from neighbors as my mother couldn't give a shit.

And she got to do the 'poor me wounded little old lady' crap which only washes if you'd never met her before and know that 30 years plus of rejection, cruelty and bullying is not excused by old age and ailments in old age.

She pulled the Classic 'I'll leave you a letter when you die so you know exactly what is going on and how much I've done for you' etc and 'Oh you're nasty, I don't want to hurt you so I won't tell you the 'real truth' until I'm dead'

Right, because you don't want to discuss it like a sensible adult but leave me grieving and then put the boot in? Fuck off.
My worst nightmare is being left without my darling Dsis and ddad, just the woman who hates me and does everything to alienate me from the ones I love so strong and cruel is her envy... I know I sound like a bitch, but she'll be loving that I'm totally excluded and don't know how he is sad

magiandco Mon 15-Dec-14 09:15:03

Misc so sorry your father is seriously ill. How is your mother? Hand holding from afar is all I can do. flowers I imagine your DF is still in ICU (and sedated) so you won't be able to talk to him properly yet. ((hug))
Ds will be disappointed that his GP cannot come for Christmas. Give yourself a day or two to work out what to tell him regarding Christmas- although he may work it out for himself. That his DGF is very poorly he probably already knows. Are your PIL local - could they take ds out to give you some rest.
Can you get your SW to organise some care (or extra DPs) for you to help you over Christmas? If ds is at school could any of the TAs that he knows help over the holidays (assuming you get DPs to pay for help- some might like to earn a little as they don't get paid in holidays), parents of his class mates, people are often willing to help but don't know how. I got some help from AgeUK when I came out of hospital some while ago (you don't have to be over 55 for post hospital care- here where I live they help younger people too). Might be worth a ring re: their post hospital support service. The hospital SW may be of some help in knowing what support is available locally.

ItIsntJustAPhase Mon 15-Dec-14 06:58:16

Misc, I'm so so sorry. This sounds awful. shocksad I don't have words.

MiscellaneousAssortment Mon 15-Dec-14 01:32:02

Sorry am just unloading here. I've been kind of paralysed and in shock, now I had some news I can move forwards a tiny bit, processing a bit I guess.

That last line got lost btw, it was supposed to be near the top, last night when was all confusing I told my mum what I thought it was cos was bloody obvious progression of untreated / unmonitored eds.

It was always the sword hanging over my head, but somehow its come as huge shock. It just doesn't feel fucking fair. Haven't we been through enough? Why am I being punished?

I've lost my sister, she was everything to me, to all of us. She was the heart and soul of the family, the centre. Then I get ill and lose my life and body, husband goes (this was good in retrospect, abusive bastard). And years of not coping, no one helping, trying to find out what was happened to me and finally I understand its eds, and my sister died undiagnosed but v obviously had it. But they wouldn't acknowledge what was happening to me, or the understanding of what happened to my sister. My mum refuses to see me as she's so much in denial my condition makes her angry. She's sent carers away from my door before, and refused to help or let my dad help me. But slowly my dad started to come help out when carers failed / emergencies etc. and they always had Ds to stay for a break. Ds adores my dad, he's the only father figure he has. And Ds gave my dad (& mum, but especially my dad) new life, new purpose. and this September, finally, I get v ill and my dad comes to help, and it was amazing, he really really helped, and for the first time I thought I could start relying on him and not lurching from one disaster to the next. No carers over Christmas, mum & dad coming down to stay instead. V stressed as my dad doesn't help as much when my mums around but at least in my own home, can prepare v v well etc...

All came crashing down. Not only have I got no care & no idea how to cope, that's not even the worst thing anymore as my dad, he might not even live.

What to I tell my Ds? He's 4.5yrs. He's missing his father, cried a lot especially as Xmas coming, it reminds him. And he's super excited that his grand parents are coming down to stay. We've got the tree and he can't wait to show them. Stockings for them. I've bottomed out the lounge & bought a sofa to make Christmas work better here so I could lie down in the lounge and therefore join in.

All for nothing. What do I tell Ds? How do I not shatter his world?

MiscellaneousAssortment Sun 14-Dec-14 23:51:50

He can't speak now sad

My mum is in pieces. She phoned all through last night but kept ringing off almost immediately for fear of missing the hospital if they called. Was awful.

She couldn't tell me what was happening, first it was his back, then his liver, then they finally realised it was his heart. Precious hours lost. It's horrific. Futile. Awful.

1. They dialled 111 instead of 999. Three times. And thought that them calling three times over several days would somehow be counted and make the hospital sit up and take notice. They never even talked to someone with medical training. All this even though i had been told by the ambulance people when I got rushed in that people with cones medical histories should always call 999 and not 111 as it's not suitable and can be very dangerous. I stupidly thought my parents would understand that went for them too. Stupid fucking me. Why didn't I force them to understand.

2. They went to the local renowned bad hospital (in which my sister was awfully ill treated and almost killed her several times - they KNOW this), although the good one is equidistant. The bad hospital sent him home twice without a thorough check

3. My parents presented without saying anything about the families medical history, with excruitiating bad back pain between his shoulder blades and stabbing pain in his legs and hadn't wee-ed for days. And didn't get a doctor who could extrapolate to referred pain between shoulder blades from aortic anyeirism, pain in legs the same as blood flow stopped, and kidney failure from minimal blood flow through waterworks...

And they sent him home with codiene. And my parents let them. And didn't tell me as they didn't want to worry me.

So by the time someone clicked it wasn't a touch of gardeners back... Massive damage has been done.

Only after someone mentioned heart damage did my parents reveal any family history. It doesn't sound like they have said the right things even now. They (parents & hosp) talking about marfans not eds.

They transferred him last night to a good cardiology hospital, and the surgeon met him there but had to delay operating until 1130am as they had to wait for a piece of equipment to be sent from another hospital. I got told to speak to him at 3 as might be the last chance I would have.

They told him it was probably too late, but they'd try. And gave him three scenarios, 1. Not make it to surgery, or not make it through 2. They'd open him up and find damage too extensive so wouldn't continue and just make him comfortable 3. They'd be able to operate ok, and then take chances afterwards which are substantial due to the nature of the surgery & the illness.

I've just been in no mans land just waiting and praying and finally heard back tonight which is why I've posted.

Against all odds, he's made it through and they think they've fine enough to give him a fighting chance. They've done 3 stents and at least single bypass but details sketchy. The kidneys the damage is v v bad, he's on dialysis and one looks v bad. The legs they not hopeful about. And other stuff but having trouble remembering now.
The main thing is he's still alive.

In fact I told her it would be an anyeirism

murmuration Sun 14-Dec-14 23:07:27

Hugs, misc. Just keep calling and being in contact. Knowing you care is the important bit, not whether or not you can make it there. Would he want you to harm yourself to come to him? It would probably make him feel guilty. How's your Mum doing?

MiscellaneousAssortment Sun 14-Dec-14 22:48:46

Just hoped I could update here. Sorry going to be thread killer again.

Can't believe this is happening combined with my constant fear coming true.

My dad is seriously ill. Last 24 hrs I've just been frozen, waiting. But after 10 hrs of surgery today, he's still alive. Thank god. Was told it was unlikely he'd get this far. I'm going to try and sleep a bit now. I spoke to him at 3am last night as was told I should then.

Anyehrism, lots of. V bad. Lots of historic damage, they can't believe he had no symptoms until last week. He says not, but him and my mum have been in massive denial about everything for a very long time. They didn't even tell the docs the medical history (that my sister died of eds type 4, and I am severely disabled with some form of eds). I told them they needed regular testing and gave them lots of letters from my consultants... But they refused to even talk about it. Never got scans.

I can't get to them as I need alot of care and help with Ds. My parents live 200 miles away and even the journey would deteriorate my condition a lot. I have no one to help me or DS, as it's my dad who helps. I feel so useless and pathetic. My dad could die and I can't even get to him.

Sorry.

MiscellaneousAssortment Sat 13-Dec-14 16:09:02

Very interesting article

CFSKate Fri 12-Dec-14 23:52:58
MiscellaneousAssortment Fri 12-Dec-14 00:40:00

Thank you everyone. You all make a massive difference. People that 'get' why it's impossible to just barrel on through and deal with it all... How the hell do you manage when you know dealing with anything will leave you in a worse position physically and therefore unable to deal with either the next urgent awful thing or just doing anything like eating of having a shower.... Arggghhh!!!

Not sure whether to address the social worker issue... It was a weird/ unprofessional way to behave right?

murmuration Thu 11-Dec-14 07:08:42

oh, misc, that all sounds horrible. When it rains it pours sad I'm useless at advice, but I hope some electronic support is something... and don't worry, you didn't break the thread! I suspect we're all just exhausted. I am.

No, I have no idea of the outcome of the MRI. I guess I need to make an appointment at the GP to find out. But I'm just so tired I haven't had the energy to pursue it.

magso Tue 09-Dec-14 11:29:44

Hi! I lost the thead.
Sorry I missed you posts Murmuration and Misc.
Murmuration did you get your MRI results in the end? Hope the news was helpful.
Misc I am so sorry you are going through this and everything is hitting you all at once. Yes I do believe they can withhold or suspend some DPs if you are in hospital for more than a few days, and not needing the carers that DPs (assuming they are for your care not the dcs) are awarded for during that time, but surely the sw should have been trying to find out if she needed to put things in place for your dc and what extra support you need on discharge. I sincerely hope that's why she rang anyway. Ds SW rang ds hospital to find out what was happening, but it is different with vulnerable children, and I guess she needed to check safeguarding concerns. We had left a message due to needing to cancel a visit. If you have had a bad experience with SS in the past it makes everyone extra suspiscious.- and rightly so. Some SW sadly get affected by some of the awful things they see and I think get tarred by this and see reds under every bed- to mix my metaphors. Could your exDP have tried to get her onboard wanting greater access to his dc -and therefor effectively alerted her to your hospitalisation? He may have felt he should have been helping care for his DC after all. I hope that situation is resolving to support you and your DC.
Sorry work are trying to dismiss you on ill health grounds, and if I remember correctly OH were not being supportive and you were not getting the adjustments you needed. I presume you are off work at present. How is your treatment and health now? Has the pancreatitis helped in redirecting treatment?
The situation with the GP is not acceptable but it sounds like the GP is putting that right. I agree something in writing to highlight the potential dangers to you and other patients if it happens again would be wise. Post hospital care in the UK is dangerously poor. By the way theorectically- you could always ring the hospital ward you were on or write to the specialist you were under for medication advice, although I fully understand your discharge was hopelessly bungled so you may not trust them.
Hope everyone else is having better days.
My wrist is still in a splint (hence the typos) but looking more normal. I am waiting for MRI scans on my back as I finally got to see the specialist clinic. The specialist didn't give me any surprises - but my GP (well it would be a dismissive predecessor really) may get some.

BeyondTheTreelights Tue 09-Dec-14 10:13:02

Oh misc, how awful sad

I'm a bit useless at emotional support, but can do practical stuff smile

Def agree with sending a letter to the practice manager about them denying you care. Cc in your mp too. Write it here if you want and we can help faff it up with fancy words wink

I'd advise the same for a.s too, mine really upped their game (though still didnt resolve anything, but at least they were trying!) after i contacted my mp about their shite service

Your h, it sounds like you are doing the right thing keeping ds away. Can your dps block his number at all or anything? I wonder if womens aid might be a good place to get advice about keeping him away?

And work. Hmm. Where were we with that again? Sorry, brain not fab atm. Do you have a thread in employment issues about it? I know the responses there were useful when i finished work after a maternity leave issue

flowers xxx

ItIsntJustAPhase Tue 09-Dec-14 10:01:03

Misc, I meant to reply but I was just open mouthed with horror at their attitude.

I think k you will get better service now.

But I would also send a letter in which you use the words 'failing in your duty of care' and that you will be taking the advice of a solicitor. I bet you get better service then.

MiscellaneousAssortment Tue 09-Dec-14 00:38:15

Oh ffs sake spent ages writing a post and my phone crashed and lost it.

In brief, sorry if I broke the thread by whining so much. I hope everyone's ok and managing in the run up to Christmas.

Got a reply from GP practise, reluctantly admitting that I was somehow 'allowed' to book phone appointments, err, in fact just like anyone else is allowed to then.

And that yes, they can see my 'point of view' that refusing to allow me to book an appointment, and then not passing on a message to any of the doctors telling them I wasn't allowed to book an appointment, was from 'my point of view' denying me medical care, and was making medical care inaccessible ('my point of view' somehow insuring them from the horror of admitting liability, ffs).

I would love to know why anyone would think that it was acceptable to behave like that... Refusing to even refer it on up when clearly informed about my disability, recent discharge from hospital, and even refusing to suggest any way of helping me when it was explained that me running out of essential medications would result in life threatening withdrawals.

Tbh I know it shouldn't have shaken me up this much, but I'm too scared to phone up now they know I complained about them. I can't deal with this on top of everything.

MiscellaneousAssortment Thu 04-Dec-14 03:13:22

Erghhh. Feel very under attack... All at once and too many...

1. Work are kicking off their efforts to oust me again

2. H phoned up my parents very late at night screaming and sobbing about his right to see Ds (History of massive abuse of me, emotional, sexual, financial, physical...) in front of Ds some of it. Then theres the neglect of Ds to the point where he couldn't be left alone with him. And lots of other stuff too...

3. Can't access medical care now as I've been told my GP no longer does telephone appointments. No idea of this is true or if this is receptionists confusion/ defending gp time a bit too rigorously. But as I can't physically get there, and they won't come out unless it's an absolute emergency (& even then they'll say dial 999 rather than them)... So how am I supposed to titrate down from a massive amount of very strong drugs, and change doses, swap medications again at different doses??? I've only got a few of the ultra strong opiates left, and am panicking. I got told this almost two weeks ago but they were supposed to give a message to the gp, but heard nothing back. I emailed today as hoping it will get passed on but I don't know if it will. You have to be completely healthy to get medical appointments and I just can't do it sad

4. Finally, adult social services wrote me a horrible mail today demanding a meeting to reassess the money they give me for carers (direct payments) & threatening to stop my package. Theyve given me less than a week and no choice of day/ time.

Considering their recent behaviour I'm not at all keen to see them without proper support and preparation. These meetings have a massive impact on my health at the best of times, and my advocate isn't available at short notice.

I was really upset with their behaviour when I was in hosp... But don't know if it was allowed but crass & unpleasant, or not allowed.

Does anyone know how ss would have been notified of me being in hospital?

The hospital said there's no protocol / procedure to do this and they didn't share this information, so how did she manage to know?

The first I heard was being told she'd phoned the ward and demanded confidential information on the diagnosis, prognosis, how long I'd be in hospital for and also, who was looking after my son and was he getting satisfactory care!!!! The nurse came straight to tell me as the questions made her feel uncomfortable, and she was horrified to hear that ss have no right to my personal medical information without asking me first and getting permission (took it back after a bad incident a couple of years ago). Turns out that's not the impression the nurse had on the phone, and the nurse kept apologizing when she realised she'd broken patient confidentiality.

I asked my advocate to email ss with full details and a request to contact myself or my advocate directly for a full update. Friend left several messages. No contact until this unpleasant mail... But she phoned the hospital two more times to demand info off them! And refused to speak to me when they said that they couldn't tell her all she wanted to know but I'd be more than happy to speak to her, and had in fact requested that I was put on the phone when she called as I wanted to ask her something urgently (her help organising hosp transport on discharge)... Nada.

They can stop direct payments if you're in hospital more than X number of days, and I assume that's why she was gratuitously keen to get nurses to speculate on how long I'd be in for. But to do OT like that was needless and I felt very harassed by her. All she cared about was stopping my money or taking my child into care. Didn't give a shit about helping me or even finding out how I was. It would have taken far more effort and time to do what she did rather than phone/ email my advocate who has been very involved with all ss interactions for years, and who ss are used to her talking/ writing on my behalf.

Am really upset & can't deal with it all, one would be hard enough...

BeyondTheTreelights Sat 29-Nov-14 20:26:10

This has fallen off my tio, just placemarking, will catch up soon
Hope everyone is doing okay flowers

murmuration Wed 26-Nov-14 12:17:23

Hi all. How is everyone? Welcome to the new ones.

I've been struggling this week. I did too much on the weekend -- which consisted of unpacking two boxes of DVDs and putting them on a shelf, which took all of an hour on Sat AM sad and yet I could tell it was too much then and I've really been struggling at work. I spent a good 30 minutes trying to think of the word "setting" this morning. Felt like an idiot when I finally realised it. I had tried "situation", "layout", and "substrate" and even tried googling the word I was using it after, as its a fairly standard phrase, typing each letter of the alphabet afterwards hoping the phrase would pop up.

I've heard nothing about my MRI results yet, and I'm not sure who to call. And I don't have energy to anyway. I figure I'll make an appointment at the GP to touch base if I haven't heard anything in a week -- I just took a blood test the neurologist ordered last week, so those results should be back then, too.

I finally got an appointment with the CFS/ME nurse. It's at the end of January. I hope he can help some, with attitude if nothing else. I find I'm getting really angry at not being able to do stuff. So I know I should be lying down all the weekend, but I don't want to, and even if I do, I'm really angry that I have to. And I'm fairly sure I'm getting less rest than if I wasn't angry!

I know what you mean misc about thinking its all in your head. I sometimes think well, I'll just do stuff. Then my body gives out and I realise I can't. But it is hard when the medical professionals are saying there's nothing wrong, and that I'm Depressed.

ItIsntJustAPhase Sun 23-Nov-14 19:29:42

Misc I also struggled with feeling like I'm just being rubbish, if I tried harder I could do it, why don't I just... And then I remember that when I am well, or at least we'll rested, things are easy. It is no trouble to pick a jumper up off the floor when I am well. When I am unwell, it is so hard.

MiscellaneousAssortment Sat 22-Nov-14 16:57:35

Wise words magso I have a weird thing where I think I'm being pathetic and it's all in my head ... When its because I'm physically ill.

As soon as I'm not in an absolute crisis I always do that. I wish I would remember!

I think it's because I'm used to ignoring pain and physical suffering, as growing up I was told I wasn't ill and nothing was wrong, so thought the constant pain and struggle was just what everyone had.

It's hard to change a lifetimes thinking.

And the worst thing is because I think it's all in my head, other people do too sad

The only reason I realised that's what I was doing this time is because I felt better for a couple of days and realised by contrast how ill I still was.

magso Mon 17-Nov-14 22:56:04

Miscellaneous you have been very ill, so it is quite normal to need a lot of time to slowly recover. I know it is not easy to wait for your body to recover. The most helpful advice I was given after spending some time in hospital very ill, was that it would take at least a year to recover from being that ill. Then I stopped worrying about not bouncing back quickly enough. Sorry you are feeling so rotten.
Germ girl I hope you are feeling better today.

MiscellaneousAssortment Mon 17-Nov-14 09:23:42

Hope everyone's ok and gently respiring.

I'm feeling am very low. I can't seem to bounce back from the pancreatitis stuff. I just feel wrecked and rubbish and v miserable.

I'm hating myself for not getting on with life again. I can't seem to do anything and there's alot of stuff that's incredibly urgent and I'm heading into disaster by not addressing them.

Germgirl Sat 15-Nov-14 17:24:58

Hello everyone, hope you're feeling ok today. magso how is your wrist? Hope it's feeling a bit better & you're managing with the splint ok, I had a lot of wrist surgery a few years ago & it's such a nuisance, if you need to keep the splint on all the time if recommend getting a Limbo cast cover so you can have a shower without wetting it.
I'm totally 'meh' about my car now, after the initial horror of it. DH is going to TCut it & if that doesn't work I'll get it resprayed on my insurance, not yet though, just before i have to give it back.
Been in lots of pain recently, had a lot of morphine Thursday night, with the inevitable intestinal side effects sad been feeling sick & knackered since then, I keep retching! It's vile.
I'm just spending the weekend in bed really.
Meant to be going back to work in 8 days time!!
Anyway, I hope everyone is having a reasonable weekend.

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