Back On Spironolactone And Asking For Help

Many of you here know my story: I began drinking again due to stress after losing disability benefits (because I'm too clever to be disabled and entitled to PIP, apparently - even though I'm epileptic to the point that I am a danger to myself and others) and found that I was unable to stop. I didn't want to or plan to; it just happened because alcohol is a familiar crutch for me, and it stopped me from throwing myself out of the bedroom window when the situation made me suicidal.

My consultant took me off Spironolactone, even though I thought it was a pretty bad idea and said so. I called his secretary last week and was absolutely honest: I'm filling up with ascites again, still drinking and want help stopping (as the "do it slowly so you don't have a fatal epileptic seizure" approach has really only encouraged me to carry on).

I'm back on the Spironolactone now and am happy to say that I've started peeing it out like a trooper. My GP has also given me a number for an organisation who offer rehab and therapy and - if I'm lucky - I might get my wish for a safe detox that won't put me at risk of status epilepticus. This is the only way for me now, and I'm making that phone call tomorrow (I forgot that today is a bank holiday and am disappointed that I couldn't do it this morning).

I have a massively supportive husband who will probably stop drinking in the house while I'm still in the danger-zone where you know you could easily start again, but please wish me all the luck anyway, because I need it!

29 Replies

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  • I would like to wish you all the best and think its great if your husband stops drinking in the house as its just a temptation that you can do without. There are other organisation that could help like AA or SMART they have online help too.hopefully you will find somewhere with this link while your waiting to find out about Rehab or counseling. love grace nhs.uk/Livewell/alcohol/Pag...

  • Hi Grace; I did look into AA, but was put off by the religious aspect (which is apparently not always optional). My GP has given me a number for Open Road, as I probably do need medical intervention to get me safely off the falling down juice and this seemed like the best solution to her. I don't know if you get put on a waiting list when referring yourself or not, but I want to be dry, sober and healthy again before going to Sweden this October (I just love it there; I can actually breathe and the clean air alleviates my CFS). Thank you for the good wishes.

    Gemma xx

  • Wishing you all the luck in the world. You can do this and definitely don't let the dwp get you down I had to fight them for over 2 years to get what I was entitled to so dig down deep and fight them and your demons xxx

  • My husband found a really good job during that time, so I decided not to bother. I genuinely wouldn't be able to cope with the stress of a tribunal, or even applying again - especially when I'm trying to stop drinking (again). I'm glad you got there though - not enough people do.

    Gemma xx

  • Hi there im new to your story will read it later. PLEASE try and focus on wanting to give up. I'll tell you why.. I was knocking back a bottle of whisky a day trying to block out memories. I had 5 home detox never worked.was prescribed every craving drug possible- no good even antabuse yeah even managed to drink whilst on it!! Well things came to head Jan 15 when I started being physically sick actually throwing up massive dark red clots screamed for carer who dialled 999 rushed to resist where they prepared me for emergency surgery. Don't know why but I got out the bed ripping all cannula out my arms and jugular! Tried walking,collapsed smacked head on sink started throwing up again! Back in the bed there were nurses squeezing bags of blood into me. I said I need wee nurse said ill get bedpan . When they rolled me over one nurse sucked in her breath and said oh my.. yup I had blood pouring out my backside.thats the last thing i remember before waking up in ITU with tube down throat breathing for me. Typical me sat up and started pulling out tube!! Outcome: I had portal hypertension and had TIPPS fitted. Consultant said I had a near death experience. Next outpatient appointment im told im end stage liver disease-terminal

    So you will try your hardest and beat this.

    Jane

  • Hi Jane, I'm so sorry to hear your story - that must have been terrifying! Even my doctor (who knew I was a heavy drinker back then) didn't realise that my symptoms were linked to cirrhosis. By the time I ended up in A&E I was too weak and too nearly dead to fight to go home, and they wouldn't have let me anyway (I was puking blood on a daily basis before I went in, even though I'd given up the booze by that point). I needed two blood transfusions and two plasma transfusions, and my vitamin, mineral, heart rate and sugar levels were either bottoming out or going through the roof. I was very, very ill. I never had bleeding from the backside and I seem to have beaten death (yet again. It's not just cirrhosis that has tried to kill me, but I continue to just not die and fight most things off) but at my sickest (in ICU) I also had a near death experience - saw my dead grandmother, who I was always very close to in life, and she sent me back because she said it was too soon to see me again.

    I have fought and won this battle before, and I *will* do it again. I just need some extra help this time xx

  • Bloody hell! sorry I'm speechless .

  • The stay in hospital actually uncovered a lot of things that we didn't know about, through the daily blood tests. Hypothyroidism, for one (so I learned why my hair periodically thins out), and I've inherited my family's propensity for high cholesterol and heart problems. I don't come from particularly healthy stock, I'm afraid!

  • Oh my!!! So you totally understand the need to quit regarding help you got this group but if your on Facebook add yourself to living with liver disease

    And..crap..I cant remember the other's. Memory comes and goes, long time effect of alcohol. Try typing liver in Facebook search box.

  • Thanks for this; I searched on Facebook a little while ago but couldn't get anything to pop up. I shall head over there.

    My memory is rubbish too. I'm epileptic, but I'd be lying if I said that years of heavy drinking haven't also played a part. My coordination and handwriting are shot too, for both of those reasons. I can't change the epilepsy, but if I had access to a TARDIS I'd certainly go back and tell the 16-year-old me about the present day me, and how to stop it from happening (although, with the genetics in my family, I'd probably only be able to make the younger me slow down the process, as it would probably still have happened because of all the other meds I'm on).

  • You mention memory problems co ordination and writing?? You blame epilepsy.well answer these questions in your head.

    How many years been drinking?

    Your age?

    Previous treatment for alcohol probs?

    Do you shake quiver or tremor?

    If so can I suggest you look up Ataxia

    Might sound strange but it very difficult for doc's to diagnose. But they think I've got it I'm waiting to see neurologist..

  • As I previously said, I'd be lying if I said I didn't think it also had to do with drinking. The symptoms after a seizure are exactly the same though, so it's difficult for me to differentiate between the two.

    I'm sure ataxia was mentioned while I was in hospital; I shall ask my neurologist next time I see him.

  • What does that even mean? Do you think that only stupid people fall into the alcohol trap? It's an illness, like any other, but I bet you wouldn't make a comment like this about someone with cancer. Before you say that someone with cancer can't help their disease, people who struggle with alcohol can't help it either.

  • Actually it was a dig at social services. .they must know you have a condition

  • I wish you all the luck in the world with your battle; and it is a battle, every single day. This life is way too precious to waste, I hope you get the support you need and find your way back to leading a healthier life. No one who hasn't been an addict can understand why you continue to drink. My OH continues despite everything - despite reading as much as I can about addiction I still can't work out why he does, but he does. I know how hard the battle is to win, but with support, you can do this. Keeping everything crossed for you. xx

  • I don't think any of us really know why we do it, but I do know that addictive personality isn't the sole reason that I continue to drink, because I know it can't be (if that we're the case, then I'd be eating a whole box of Jelly Babies every single day, instead of only Saturday nights when Doctor Who is airing). I'm hoping that we might find the reason once I'm in therapy, but I come from a fairly troubled background so there's going to be more than one reason to be uncovered, so I know it's going to take some time. But it's time that I wouldn't still have if I carry on the way I am, so it will be time well spent.

    Thank you for your kind words, and your understanding xx

  • Well done you for facing up to the problem, I take spiro myself and although not retaining fluid at the moment I know what a relief it can bring to start peeing like a racehorse, though my consultant did warn me that if I continued drinking alcohol, spiro would not work forever and I would face serious consequences.

    Everyone has their own way of dealing with things, I too returned to alcohol in times of stress, telling myself that one glass of wine was ok but deep down I know my own weakness and I was proved right. I remember the last time I was bloated and had jaundice I was standing outside a supermarket in front of the gp's surgery, where I had an emergency appointment made and in my mind I was making a deal with God - ok, I know I have a problem but let me be ok at the appointment until Monday (it was Wednesday aft) - and the wine I will have over the weekend will honestly be my last. I ended up at the hospital admissions clinic that evening, with my sister who was terribly worried about me again. Luckily I wasn't admitted that time but it was by the skin of my teeth. I am absolutely dry now, I guess God made his feelings clear.

    Sound like you have made your mind up and that this is the right time for you to take assertive action and that you also have support there of your husband and gp, I hope that you can draw strength from that. Don't put too much pressure on yourself but be honest with yourself at the same time. Make that call

    You are absolutely doing the right thing and taking control of your life, it isn't easy it's sodding hard I know.

    All the very best, lots of positive thoughts going out to you. Stay strong. XXX

  • Thank you for your kind words, and for sharing your story. I've never been jaundiced, not even when I was rushed into ICU, but I know that only means I was lucky, and not as advanced as my consultant thought I was at the time. I've never been on the transplant list because I've never needed to be - and for my son's sake I have to make sure it stays that way.

    I wish that going cold turkey was an option for me, but apparently that's part of the reason I nearly died four years ago (it's the epilepsy). I know that I'm going to hate every hour of therapy because I shall probably still want the occasional pint of real ale but won't be able to have it, but I have got to put an end to this, if I want to stay out of hospital and stay healthy.

  • i do wish you luck..but you don't need that. you NEED to hit rock bottom. period. or you will die. End of story. Sorry, but every one here has their own nightmare story, yet we manage to stay sober. Go to AA. Everyday. pray ask for help and then be grateful at end of day. Dont drink anymore.

    Change self pitying behavior.

    Sorry if I sound rough..but Ive been where you are for over 20 ears. Now I have nearly 9 years sober and am waiting on my second transplant.

    No one wants to be the bad guy, but why should your own GP care when you dont?

    take care. Sounds like you need it.

    xo

    kimberly

  • I do care though, or I wouldn't be reaching out. I have a husband and son to consider (my son is autistic with severe learning disabilities. He lives in semi-independant housing, but dying on him when I'm still this young is absolutely not an option; I can't do that to him).

  • Best of the best luck to you, keep going, keep being positive and beat it for you and your family.

    Lots of people use the 'cruel to be kind' approach, butbit rarely works, compassion goes a lot further.

    Youve been given a tough genetic hand, but choice as you intimate can make a big difference.

    Why some people have reliances/addictions is a lot to do with genes Im sure, but in my exp, personality is a huge factor. In my youth i smoked 20 a day for 6 years and then just decided to stop. Not had a cig for 27 years. I used to drink a lot too as a late teenager, early 20 something and just stopped one weekend. Never really looked back since though I can drink without needing to I decided I didnt need to. Must be narcacistic or something, lol!!!!

  • look, Im always kind..so lets be fair. Look over my back posts. Ok? Its just sometimes I am am sick of stating the obvious.

    Of course no one wants to be mean. and yes, you do need a hospital detox.

    I just don't want you to die.

    My partner dies from this over a decade ago.

    And sadly, drunks need the truth, not coddling. That comes next.

    Sorry If Im offending people, but some things are true whether you want them to be or not. and my sobriety is not for those that need it. Its for those that want it. Only you can decide if your that parson and when enough is enough.

    .

  • I've been facing (and hiding from, in equal measures) the truth since I realised that I couldn't just stop when the stress and worry was gone. I genuinely didn't think this could happen to me again when I know the consequences - but it can and it did. I meant it when I told my consultant that I'd never drink again; we both believed that I could stick to that - and then politics happened and my world crumbled. You could be 40 years clean/off drugs/whatever, and then something happens to wipe all of that progress off the map because it's the only comfort you knew when you were going through a hard time before.

    My liver is actually the very least of my medical worries, but enough *is* enough and I thought I'd made that quite clear.

  • Have a look at mysponsers.com as a back up to giving up booze

  • This is a poem I wrote for my OH (who continues to drink) - I hope it inspires you (that sounds pretentious - I don't mean it that way) to do this for your boy and for your hubby, but most of all for you. You are unique - there is no one else in the world like you - which makes you special. So love yourself enough to do this for you, a by product will be the happiness of your husband and son....

    xx

    I love you to the stars and back

    What about the moon you say?

    That’s way too far, for all I know

    I’d get lost along the way

    You live in a world I cannot share

    Excluded from the game

    You love that world much more than me

    All I know is shame

    My love for you it knows no bounds

    I’ve done all I can do

    But now it is your call

    Choose what I mean to you

    The time we have is all too brief

    Who knows when sunset comes

    Know that I will love forever

    Till all your time is done.

  • This is beautiful. And sad. And so true. Thank you for posting this.

    I can be stronger than the booze, in time. My son and my husband won't be losing me any time soon if I can help it xx

  • Beautiful poem and it says it all.

  • My dear girl . I wish you all the best luck possible, you know you can do this. I'm so sorry about your benfit, that must of been devestating, i know how much I was out of my mind with worry when I was i had to reapply. But concentrate on you for this moment and then apply. Will be routing for you.

  • Hi tarantulagirl, well as you can see you have lots of support. I too am an alcoholic in recovery. This was the cause of my end stage cirrhosis

    I used to drink on my emotions good or bad, losing my dad was the hardest most heart breaking periods of my life. I took care of him for 16 months with cancer, I did not drink at all during that , even after sitting and waiting 16 hours in a hospital with him when he has his left lung removed..i found the strength from god knows where; even when it then went to his brain. I am divorced , have 3 grown up children and 6 grandchildren. I have relapsed in the last 9 yrs .. I hit my rock bottom when dad passed.. and I mean literally, I was under the care of the hospital due to ascites again in 2014.they wanted me to go in for a detox, but with the help of Aquarius and my determination and diazepam I detoxed at home. It worked because I wanted it so bad ... I am only on esa/ part dla.i would apply for pip but don't think I could handle all what goes with it due to my hepatic encephalopathy at present; lack of sleep and slight confusion. You need to stay strong, giving up is the easy part. Staying sober is even harder ..good luck and hope you find your way xx

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