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09/01/2013 14:28

Hi u poor downtrodden people,

 

Not impressed today. Chloe has been in the ED unit two weeks now. Doctor rang me yesterday and said she has lost another kilo and is now 36kg. That is 5st 9lb as I find it. Plus her potassium is low and shes denying vomiting. Whats new there mate??

Her dad went to see her last night as I had the little ones and he had a moan at the nurses as to what they are actually going to do to stop her vomiting which they replied...its early days. I suppose it is. Im just worried and panicking. She is at a scary weight and they simply monitor her for 30 minutes after meals. I wouldnt mind but she looked the doctor in the eye a while ago and said look, I can vomit all my meal up hours later so whats the point? Point made. 

I am knackered. i have no energy whatsoever and feel ill every day. I worked all over xmas whilst doing housework, dealing with the kids, whilst running to and from the hospital and nearly bursting out crying at every opportunity. Even after simply hearing a song in the queue in Tesco garage. I have had to have this week off work as I am just so bloody low, crying and panic and worrying over Chloe and all the rushing over xmas that I am exhausted.

The doctor from the ED unit rang me this afternoon. I told her I dont know if Chloe is better or worse off in their care than she was at home and she started chatting about discharge!? I have arranged a meeting with her next week on my day off. I was that worried about them sending her home so poorly at such a low weight with low potassium and other abnormal bloods that I rang her doctor at CAMHS. Got upset on the phone like I always do. She reassured me they will not discharge her as she is so unwell. Why does the bloody left never know what the right is doing??? They all speak to me like im stupid and dont understand this disorder and leave me frustrated and explaining exactly how her disorder does work every time leaving them with nothing to say.

So yep. Thats the news from today. Im going to visit Chloe for the first time since Sunday tonight so we shall see how that goes. Chloe is only allowed visitors certain nights so it has been really hard to deal with not seeing her. I will admit that everytime I get to her bedroom door in the ED unit that I stop. Take a deep breath. Pause. Then go in. You never know what you are going to get. This aint not Forrest Gump box of sugary goodness though. Your talking demon tackle. Horns bursting through the scalp, grunts, arms extend to the floor while her back stoops and she procedes to drag these ape arms while she walks. Its not always like that, just nearly 80% of the time.

Apparently I should think myself lucky, Chloe says 'Linsey doesnt let her mum see her full stop for the last two months' apparently. Well thats me told, should think myself lucky i should that I am allowed to grace myself with her presence at all!

Thing is, and this is something that I feel like crap for admitting. But since going from the normal Paed ward to this ED unit, I can breath slightly. I felt probably half the burden fall from my poor back when she went in. I feel glad that I am retricted to minimal visiting sometimes because this last 12 month have been so bloody awful i just crave at least a days break.

I have begun reading a hell of a lot in my very small receation breaks in this life I have noticed just recently. I am that consumed by this eating disorder I needed an outlet, no not an outlet, an invite into another world. Someone elses life. To lose myself in something that has nothing to do with eating, food, weight loss, pottassium levels, forticip or hospitals, so I read. I read and read and read and it really helps. Im get lost in the book, im gone, I'm there wondering what the hell Lady Chatterley will do with that tree and the gardener when...beep beep. My phone goes. A text. I know its Chloe, but opening that text means being dragged to the depths of despair in that split second while I give in and succumb to opening the message...it read 'hate u. why pt me in er thy hate me n u dnt care. dnt cum 2dy, or ne ova dy'.... Nah Constance, I now couldnt care what you do with Oliver up against that tree anymore, my daughter hates me and doesnt ever want to see me again.  Well give me the pen, ill sign on the dotted line and join the bad mothers club. I will happily join! Because I need a BREAKKKKKKKKKKKKKKKKKKKKKKKKK!!!!!! And if that makes me a terrible mother then so bloody what!

Getting somewhere???

10/01/2013 09:30

Hya you lot,

 

I went to visit chloe for all of 1 and a half hours last night and she was not in a good mood. I knew because the doctor had been in touch earlier in the week that I had to bring up the fact that we all knew that she was vomiting every snack and meal up as it showed in her bloods and wasnt looking forward to it. Everytime I get on her back about how serious this illness is, or ask how we can start from somewhere like just keeping one meal a day down she goes blank and is dertermined not to speak. This was no different. 

The thing is my daughter has starved her body so much that apparently she is now in the 'red zone' as they told me today in terms not only of her eating disorder but how underweight they categorise her as. And obviously her poor brain is that starved that to her she is stuck in this vicious cycle. She has to eat because they threaten her with a nasal gastric tube if she doesnt so she eats-feels utterly depressed because she has eaten-vomits because she feels so down-feels guilty because she has vomited- has to eat another meal in an extremely low mood- vomits this meal too. And it goes on. And on. And on. 

I realise that for Aleyah to really come to terms with this disorder she needs nutrition inside her to feed her brain so that she can understand and  rationalise so that she can be involved in her own care, but at the moment she is so extremely lifeless in her mood, I really see no way up at the moment.

We had a heart to heart last night and she told me she wanted to be dead. Nothing will ever be good for her and she wants to die as she cannot stop starving and purging. I told her we need to make a plan my dear to at least not vomit one meal. Pick one meal you are gonna fight your bloody hardest not to throw up. She sobbed quietly and ignored me for around an hour. I told her the way she feels right now is not something that is glued to her and how she will always feel and that just enough nutrition can make her change the way she views this whole situation.

I hugged her and told her the ribs beneath my fingers really made me sad. I got upset and I told her I felt she was slipping away and that I didnt want her to leave me. She seemed sad at this, took a few moments to compose herself and told me she wanted to try tomorrow. I said try what? Do you mean not purging  one meal? And she said no, I want to try them all. 

We went to visit one of her mental health nurses and informed her of Chloes wish and I told them she would need lots of support for this. When she had gone, the nurse and the dietician told me that they will support Chloe but feel that as she is losing so much weight she may need monitoring after meals for longer, and told to stay in communal areas inbetween school(on the ward school that is) and mealtimes and of course bed. Im just scared that she will find it so hard she will end up being supervised 24/7 and  her mood will definately take a turn for the worst. But what is the other option? She needs nutrition, to feed her body and brain before she can begin to get better, but wont give herself the nutrition!!!!!! Ahhhhh, bloody hell. I dont know. Drives me mental trying to constantly find different angles to come at this eating disorder from. And believe me I have tryed a lot.

Im not going to visit her today as they dont allow it because they have Thursday activities. I just hope she really goes for it today. i told her the main thing is its not about failing, you can only try. I said play it meal to meal not day to day. And if you slip up, brush yourself off, DO NOT feel guilty, and say 'I will do my best tomorrow'. And thats all anyone can ask.  

Insomnia

11/01/2013 18:24

Hya!

 

I am shattered. I dont think I have slept properly for like 5 nights now and i am really done in. Everyone keeps saying go and get some sleeping tablets but I hate the way they drag you straight into sleep, it scares me a bit. And that doesnt really solve the problem does it, as its my daughter being ill in a hospital thats the reason I have mass anxiety when I get into bed and cannot sleep. Until she gets on the road to recovery and gets out of that place I doubt the sandman will be visiting. Any time soon anyway.

I went to visit Chloe at the hospital today but only briefly as I was there to learn about the right portion sizes to give her when preparing her meals as they are letting her out after breakfast and I have to bring her back for her evening meal so she is home at lunch. Its not rocket science just a couple of ladels of each thing like 2 ladles of peas (jesus!) and 2 ladles of chicken  curry or two ladles of pasta bake or whatever. But they are jumping the gun a bit because thats what scares Chloe the most-the evening meal. Its the biggest and the most calorific I suppose. Thats why shes just havng a go a lunch and snacks this weekend.

I exhausted so Im going to go and put my small ones to bed and get in there myself. I will write tomorrow xxx

weekend visits

14/01/2013 15:29

Hya again. Sorry I only got to write today I havent had chance to fart never mind write a blog haaa.

I was told on friday that Chloe was now allowed to have morning snack, lunch and afternoon snack at home on Saturday and Sunday. That meant I could pick her up from the unit at 10:30am and have her back in time for her evening meal at 4:45pm. Saturday went well. I picked her up, we spent time at home for a while, me, my two younger children and her all had beans on toast together and she had fruit and ice cream for after. I had to supervise her after the meal for 30 minutes as they have decided at the unit but I do it longer, plus I allow her a tiolet break after 45 min supervision because to be fair I just dont trust her yet. Then she was allowed to go and see friends for a couple of hours which went well. 

On Sunday her father picked her up and dropped her off with me and she sat watching TV till lunch, I made her a sandwich, fruit and 2 yoghurts and she seemed fine. I completed my regimented supervision watch and imagined I was vinegar tits from prisoner Cell Block H to the best of my ability and we were ok, having a laugh. Then, she said she had made some arrangements to see her friend the day before but these arrangements were not set in stone as i heard it. I drover her to her friends house and she wasnt in. Had gone out with her dad her mum said. She gets back in the car and well, all hell broke loose. She snapped and changed straight away. Well if I have to come home again I may as well be back in the hospital. I want to go back. I said well its your dads turn to take you today so I will have to ask him. She went silent and wouldnt speak to me. She stormed to her room and sat behind her door and would not let me in. I asked her why it was my fault that her friend had gone out but she said go away. 

Her dad turned up to take her back so I ran upstairs and said your dads here are you ready and she was ust sat on her bed sobbing her poor little heart out. She was absolutely devastated that her friend hadnt been in when she had gone and took it personally and felt rejected. 

Days earlier this particular friend of Chloes had knocked on my door really worried asking after my daughter so I explained to Chloe that there was no way, had she known you were coming at that time that she would not of gone out. And I know she would't of. I hugged Chloe and she came to and we decided to have a walk around the shops to distract her for a while.

You know, sometimes I have these heart to hearts with my daughter and its like shes not listening. She is. For every cross word, or silent treatment she gives me, she really does hear me and I think she actually finally, properly let me comfort her yesterday. And EVEN sent me an I love you, night mum text!

That cheered me up a bit. But to be fair I really found out how shot my nerves were today. You just plough on dont you and get on with everything and dont realise what its doing to you until the stress starts to leak out. Insomnia, panic attacks, fatigue. I had this training at work today and because we had group work my nerves were shot to pieces. And I have to do it all again tomorrow. I wanted to scream look you ignorant b*****ds, No, I actually dont care to place a bloody blindfold round my head and act the clown as a way of learning about communication. When I am actually dying a bit inside as my daughter is at this exact moment in a hospital. I think most of the time= woman! Who are you actually kidding trying to hold this job down while sorting two small children, the house, and caring and worrying every minute about my daughter who is realy sick in hospital. But you have to carry on dont you. who else will if I dont?

 

Bex X