Desperate. Type1 daughter.

sarahpench

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Hi maz sorry to hear about your daughter, I pray you all get through this somebody directed me to your post, I have been where your daughter currently is, and emotionally it is draining on everyone, I'm working with a charity at the moment if you'd like I can give you some information that I think will really help if you can message me as it's not letting me message you, don't ever blame yourself and as for attention seeking I can guarantee you that she wouldn't be some medical professionols don't understand the psychological impact I hope I hear off you, thinking of you all x
 
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serenity648

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Thank you all for your replies... I'm sorry... I'm at a loss for words as I feel like I'm sinking rapidly... I want her home.. To open her eyes... This feeling ... It's awful...it's surreal...

this is NOT your fault. Teenagers are a law unto themselves. Keeping you and your daughter in my thoughts xxxxxxxxxxxxxxxxx
 
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Osidge

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Keeping you in my thoughts and prayers, @Maz73. I hope that your daughter's situation is improving.

Take care

Doug
 
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Salvia

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Hi @Maz73, still thinking often of you and your daughter, and hoping that she is beginning to make progress, and hope that the info from sarahpench has been of help to you
kindest regards to you and your family x
 
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linnyb

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Have only just come across this thread, but how could anybody not be touched by the picture & desperation of a mother who has no legal control over her daughter. Maz my thoughts & prayers are with you both, like many on this forum. Mental health & a persons reaction to diabetes is often misunderstood & underestimated. It is an area I believe there should be greater research into in order to provide correct support to those in need. Love & hugs to all of you, I really hope things improve x
 
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sarahpench

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Thank you for checking I think about her alot since she posted hope everything is OK xx
 

Osidge

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I have sent her a PM.

Doug
 

linnyb

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I hope she is okay & that things are improving, I hate to think of either of them suffering.
 
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Osidge

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I will update the thread if she replies to my PM.

Doug
 
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Salvia

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Thanks for that Doug. I too have been wondering how Maz and her daughter are doing. I hope she replies to your PM and that things are on the mend, for both of them.
 
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Maz73

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My apologies for not replying sooner... Everything has been so surreal, and I'm still trying to get my head round it all.

It was the Saturday that I posted... That night was a bad time. I had to tell my 17 yr old son and my 12 yr old daughter ( there was no point then in saying anything to my 14 yr old as she would not understand ) that their sister in all likelihood would not come home but if she did, she would be different.

That was a hard time. So very hard..

Vicky was not expected to wake up. But she did after many days, after seizures would not stop despite various medications, her body did not move, it was only by her eyes that they knew..

She not only woke, but she woke whilst sedated. When the tube was removed she tried to talk. I'd been to see her in the morning and her dad who'd flown back from Afghanistan was on the afternoon shift of just sitting, watching her, talking to her whilst she lay there.

He called me to get back asap.. As I can't drive at the moment I was relying on lifts from a friend..

When I got back to the hospital, and I saw her awake, asked her if she recognised me.. She did. She spoke, more like whispered.. By god you have no idea how that felt.

My ex husband, her dad is not like me... I was told I literally interrogated the doctors and nurses who were dealing with my daughter all the time she was in ICU. But I know sometimes they gloss things over, don't like to tell you everything, won't tell you some things unless you ask and ask... The nurses and her consultant were amazed, they called it a miracle.. They never expected her to wake.

On Vickys discharge papers, she had a gcs of 4 out of 15 on admission. 3 is the worst, 3 I believe means, no hope.

After a few days, Vicky was discharged after being transferred to a normal ward after she had shown she could eat and drink on her own on the ICU ward.

The journey home was horrific. Vicky sat in the back seat of the car relaying events she had seen whilst in hospital. She said she'd seen a 15 yr old bulimic lad blow himself up in ICU, she described how the Windows blew out, the blood running down the walls, the bits of body parts everywhere, the reactions of the nurses and doctors....

She also described how one patient chewed his own hand off...

Once Vicky was settled in bed at home, I rang ICU... They explained that because if the amount of drugs pumped into Vicky to keep her alive, she was suffering hallucinations. I asked how should I deal with them, I was told that after a few days to gently break it to her that what she was convinced she saw, never actually happened.

Then the nightmares started... What she was convinced was real and had happened, replayed in her dreams. Jesus wept I bolted upstairs on the first scream.

After a couple of days I broke it to her that none of it was real, she cried and was adamant it was, that she remembered every detail so how could it not be.. I explained why it was happening.. All the drugs, everything that kept her alive and that they would fade. The memories would fade and that she had to keep telling herself that it never happened.

She came home with a slight weakness in her right side that is hoped will correct over time.

She went to stay with her boyfriend Friday night... She forgot to check her numbers some of the time :( when she told me, I said to her... There can't be any more forgetting, can't be any more I didn't think to... I'm desperately trying not to keep nagging her, not to cause a row over it... But as far as I can see, she has not changed. Last night she told me she's thinking of moving out in September... My heart sank, I tried talking to her.. Was very blunt.. Explained how it felt to be told what I was, how it felt to know I very nearly lost her, that she's been given a chance, that she needs to not waste it.

It is a crying shame that I know every paramedic in Gainsborough, know most of the crews in Lincoln, and a few in Scunthorpe. That before Vicky ever hit ICU that they knew if her, that all the a and e staff know her.. That the staff in different wards know her... That the paramedics after years of taking her to the hospital are as frustrated as me, that they can't believe that this still goes on after 7 years.

But my daughter, she walked arm in arm with death.. They spent time together... But then she came back... That I greatful, but I see this all happening again in the future if I cannot get through to her, if something is not done... I cannot stop her movingout... But I see what will happen if she does.

Here she is now.
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Maz73

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I have not read all the replies, but I will.... My head is still everywhere... I'm struggling to accept all that has happened and I know that may sound daft... But one minute I'm trying to accept the worst... Next... She's back...

But one thing I will advocate... If you ever go through anything like this... Make sure you have support... I don't have any other family, no real close friends... And this nearly broke me.. I would just sit in my kitchen starring at nothing.. Doing just what I needed to to make sure the other kids were ok , fed etc.... I hardly slept... I couldn't think straight... The friend who was taking me to and from the hospital, his thoughts were, why visit every day... She's doing nothing, nothing you can do for her, they will call you if needed... He didn't understand even though he has two kids himself, albeit adult .
I understood when he said that the other kids needed me aswell, but I felt split... I felt torn, it was a time I so very much wished I had other family, had a partner who could help, could listen to me rant and cry in anger... But all I could do, is what I did. Just do all I could do.

I thank you all, and I will read all the messages and I don't know why some could not pm me. And thank you also Doug for your pm, that reminded me I needed to update you all. I've been forgetting so much the last few weeks.

Maz.
 
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poshtotty

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Its so good to hear from you @Maz73 and you've obviously been through an awful time.

You've also coped incredibly well, as any of us who are parents will know. In these situations we go into survival mode and caring for ourselves and our children is our only priority. We do need a strong network of support at times like this and I hope you know you can come here at any time and find folk who will care, encourage and support you.

It seems you are not out of the woods yet with Vicky so do keep posting here if you can. Its wonderful to see her smiling and recovered. I wish the same for you too
 
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Maz73

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I'm not sure if coped is the right word , as I feel like I didn't... The past several years have been hard and I'm one who finds it alien to ask for help...

Unfortunately over the past couple of years I formed an addiction that crept up without me even knowing , I just wanted to feel happy, be happy... Smile and laugh again... Not feel so lonely.. And no, I was not coping very well.. It's why I lost my driving licence 9 days before my daughter was admitted to ICU.

I did what I'd never done before.. I had a drink in the day after a culmination of events left me on the floor. I was not blind drunk, just enough over the limit to warrant being arrested and spent 6 hours at the police station. On the 17th March I was banned for 12 months, reduced to 9 months after completion of a drink drive awareness course. I am incredibly lucky that I was given the minimum sentence. I refused all legal counsel at the station, I had no solicitor in court. I answered all the magistrates questions.. And no, I was not calm... I was in bits.

But I did thank the police for arresting me back in January.... I did thank them for their treatment of me.... Without that happening, I would not be fighting my addiction today with the help of addaction. I am very ashamed at what I did.m

The friend who I mentioned in previous posts, told me I shouldn't tell any one what I did, shouldn't of been so honest with the police, he refused to believe that I could have a problem, me... Who outwardly seemed fine, who looked like I was coping... How could I have an alcohol problem ?? ( sorry, floodgates opening here )

But my response to him.... It can happen to any one, that he actually has no idea what I've gone through, how I feel, as he listens but never hears so I gave up trying to talk , just kept myself to myself, it's what I do.. It's how I am...

So I apologise if this posts offends anyone, believe me... There is nothing you can tell me about what I did, that I have not told myself.. The buck stops with me, it does not matter that it was he that lit the fuse by his words that made me lift that drink to my mouth, it was at the end of the day... My choice. I could of been stronger but I was not.

Why I am writing this, I'm not really sure.... maybe it's because I don't really have anyone to talk to about it... It's like a taboo subject, but maybe also to warn, how it creeps up on you. Just that one drink in the evening to relax.. Just that one bottle of wine to drown your sorrows.. It soon very gradually turns in to more. You never think it will happen to you... But it can, and it does.

My friend says I go from one disaster in life to another, in a way... He is right... And it's something I'm trying to put right.. Incredibly slowly.. I feel like my head is going to explode with everything running through it...

Vicky has shown me how precios and fragile life is even though she does not know she has and that has made me determined to kick my addiction for good...

Anyway, I'm waffling on now.. It's like I have so many words to get out, so much to say, but at the same time I don't want yo appear whiney or making excuses for my actions.. As there are none.we all have choices.. It's the consequences of those choices that affect us good or bad.
 
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Juicyj

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@Maz73 Thank you so much for your update, you have been in my thoughts alot and so pleased to see your daughter's beautiful smiling face :)

You have been through so much, what has happened to you can happen to anyone, drinking alcohol can get out of control particularly if it's helping you to cope and under very trying circumstances too. I hope you are getting support now ?

Do you know why your daughter isn't testing ? Does she have any reason why she doesn't do it as much as she should ? Is she receptive to the idea of getting help ? Support is there, but it takes a willing patient to want to get it, so maybe if you know why then we can point you in the right direction for help. I know you don't want to see her suffer and neither does anyone so anything we can do to help we will try our best ;)
 

poshtotty

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I'm not sure if coped is the right word , as I feel like I didn't... The past several years have been hard and I'm one who finds it alien to ask for help...

Of course you coped! You are still here and talking to us, your other children remained looked after, fed and cared for and you lovingly prepared them for the worst. Vicky has miraculously recovered and you were somehow able to be at her side when needed, and have continued to lovingly support and nurse her since she returned home. We each have a different understanding of the word, but from all that you have said, I believe you have coped admirably and shown great self-sacrifice which is inherent in us mothers.

As for your friend - unless he has walked a mile in your shoes, he really is not qualified to judge you. I would keep following your maternal instincts. They didn't let you down this time.

You've shown great courage in sharing your own personal story too and I hope this tells you (and us) that you have found your safe place - a sheltered harbour in the storm
 

Maz73

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Hi. I hope things turn out OK for your daughter. I wonder in the future whether her boyfriend could encourage her to do the right things now that he knows how serious DKA can be?
Un fortunately, this is the second times she's been in ICU whilst staying with him. After the first time, I gave him leaflets and talked to him. He thought her vomiting was due to her being unwell, her stomach pain due to vomiting and headache due to her vomiting. Since he'd seen her in a and e and on the wards previously with prior admissions... He should of known.. Also unfortunately if she misses insulin whilst with him, his attitude is never mind just take it when you remember... He is not any of my other kids favourite person, not because he missed the signs, but because he ended their relationship a week before hand because he wanted someone else, then decided to go back to my daughter when he decided the other girl wasn't for him. Plus when she was in ICU a couple of years ago, because he thought she was dying, he had relations with an ex, then told my daughter what he'd done after she was discharged.. But, we act normally with him apart from my youngest who says things as she sees them and decided to have a word with him when he visited Vicky here at home this time. Needless to say, she was quite blunt. My youngest may only be 12, but she's going on 30.
 

Maz73

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@Maz73 Thank you so much for your update, you have been in my thoughts alot and so pleased to see your daughter's beautiful smiling face :)

You have been through so much, what has happened to you can happen to anyone, drinking alcohol can get out of control particularly if it's helping you to cope and under very trying circumstances too. I hope you are getting support now ?

Do you know why your daughter isn't testing ? Does she have any reason why she doesn't do it as much as she should ? Is she receptive to the idea of getting help ? Support is there, but it takes a willing patient to want to get it, so maybe if you know why then we can point you in the right direction for help. I know you don't want to see her suffer and neither does anyone so anything we can do to help we will try our best ;)
When asked, all she says is I don't know, I forgot, the only support open to her now is adult mental health along with the adult diabetic team who say to me... She has to go to them, not the other way round... In regards to adult mental health... It's self referral..

Yes, I'm getting help.. I see Sam my mentor so to speak from addaction and he's brilliant... Kicked me up the rear when I lapsed and didn't stick to the plan whilst Vicky was in hospital... As you can't just stop .. It's a gradual reduction with alcohol free days as the side effects are not nice..