Another year passes

Wow how our journey has progressed,  Emily is now studying A levels after doing so well in her GCSE's. She loves psychology and especially how children learn.  Originally she wanted  be a teacher, but studies are getting her down. A volunteer position with a toddler group has given her cause to deviate from her original path. In June she will become an apprentice in a nursery after completing her AS levels.  Her ultimate goal is to open her own nursery.

She still struggles,  but mainly with anxiety and has started a course of private hypnotherapy sessions to try and combat this.

I soldier on, my bond with Emily is very strong, although we fall out at times just as other families, I will always be incredibly proud.

If you are new to our story read it from the start, if you can. See what can be achieved with determination and never giving up.

If you are in a dark and desolate place right now, know that it is possible to get through it, even when you want to call time on the whole thing,  Stay strong, even in the darkest hours, there is always a chink of light,  it can just take a bit if finding.

What if you don't want to talk?

I feel compelled to write, as it's been a couple of weeks since my last post.  But to be honest I really don't know what I want to say. 

Do I talk about the two sessions I've had with a counsellor? Given the waiting list for this, in my first session I found myself struggling to recall why I had been referred.  Which aspect of my upside down life was I there to talk through and was it still relevant? The second session I threw caution to the wind and dragged us back over 20 years.  I sobbed as I recalled a 20 year old girl settling for the adulterous older man thrown out by his wife, because she felt she must "do the honourable thing".  The honourable thing lasted about 12 years.

And where is this man now?  The father of my children?  Cosy in his home, where he does not have to consider a sick child in his daily or even weekly routine.  Am I bitter?  You're damn right I am.

Do I have a moan about my lack of self control over the things I put in my mouth, which are allowing my ample frame to ever increase? The chocolate, the alcohol, anything that might give me a moment of pleasure, anything that might make me feel something other than dead inside.

Do I tell you that Emily will be leaving the unit at the end of the month?  Should I explain how she will start to build up her return to school by adding 1 lesson extra each week, but on different days?  I understand why it is being done this way, but all I can think about is how I facilitate this and still get time to go to work.

Maybe I should tell you that the closer we get to her discharge, the more anxious Emily becomes and the more I worry.  Every time she leans on me I feel the weight is too much to bear.

Shall I explain how I want to shut myself away or that I crave sunshine on my face? I want to get drunk and dance, I want to set off on a journey, I want to do many things, none of them here.  I want to forget all this crap and give my open sores a chance to scab over before the next onslaught.

There is a big mental health campaign at the moment, "Time to talk"  What if you don't want to talk?

What if she's right?

It's been a long day.  I've been trying to work from home in between running the kids around.  At lunch time I collected Emily from the unit.  We came home so she could get into her uniform, there were shakes and tears before we left for school for her one hour lesson. 

Once there, waiting for Mel,  Emily said she felt calmer. We were soon joined by a member of staff and it wasn't long before Mel got to us.  They quickly walked off to the lesson and I followed the teacher to her office.

I borrowed a desk and accepted a cup of coffee.  I took out my husbands net book and tried to do a bit of work.  I really needed to make up my hours, but to be honest my concentration was off.  As I sat and tried to work, my stomach churned.  If she couldn't manage this hour where would that leave us?

An hour later, back at reception I noticed I was wringing my hands, desperate for the two girls to reappear.
Emily looked calm, she even spoke to the teacher and made eye contact with her.  That doesn't always happen.

I was relieved as we chatted later, she'd managed, but it could have been better.  The class were revising for an exam Emily can no longer take, so the teacher had given her a book to read.  It was good that there was no pressure for her to produce work, but there was also nothing to distract  her either.

I e-mailed the school this evening and asked if, next week, Emily could be given something like a worksheet to concentrate on.

This evening I sat, at the dining room table, trying to catch up my work. I wasn't aware Emily was no longer in the living room.  As soon as I realised I went to her bedroom, she seemed to be ok, but in reality she wasn't.  I was about to step back out of the door when she lifted up her arms to signify the need for a hug.  As soon as I embraced her I felt her body shake and the sobbing began.

It was a while before I was able to get her calm enough to talk.  She's not cried like this for a while and to be honest, it scared the hell out of me.  I can't go back to this.

Emily talked about the person inside her, the person who wants her to be mean to people, to break things, to be someone she isn't.  I tried to explain that we are all a mixture of emotions and can be compelled at times to do things out of character, but she looked unconvinced.

I started to hear familiar phrases, "I can't do it" and "I don't want to do it any more"  We are walking such a fine line, she needs to get back to school and build up her attendance, but to push too much too early could set her back months.  She's also terribly behind on work. But, and I said this to her, there are no expectations on her other than attending one lesson per week.

Eventually, she seemed to calm, although the tears occasionally reappeared. Two hours later I felt I could let her get ready for bed, but a part of me remains uneasy.  What if she's right?  What if she can't do it, what will be left?

Facebook's not all bad..

There have been times, since the New Year, that I have seen a new confident Emily.  There have unfortunately, been a few times when I have seen an over confident Emily.  This over confident version is rude, selfish and gives no thought to the feelings of others, her comments can be hurtful and unexpected.  I guess this version is a standard teenager. 

On one such occasion, when she had ridiculed me in front of my wider family, I asked her not to speak to me like that, she shrugged it off with a bit of a grin.  Once at home I had to distance myself from her.  The way she'd spoken to me, hurt more than I can say.  Maybe my own dark thoughts were pushing through, but I went to my bedroom and I cried.  I couldn't understand how a girl I had been through thick and thin with could talk to me like I was something stuck to the bottom of her shoe.

A positive to come out of the confidence is a new friend, or at least a renewal of an old friend.  Mel and Emily were best friends in the early years of junior school. When the time came for Comprehensives, they went their separate ways.  Emily to the local school full of bully's and no discipline, (obviously I didn't know this at the time) and Mel to the fantastic school my kids have now been transferred to.

It started with a Christmas card being sent via Emily's brother.  Emily was surprised as she assumes no one really wants to be her friend, they must just pity her or being doing it for 'a laugh'.

I jumped on the opening and suggested she track Mel down on Facebook so that she could send a message to say thanks for the card.  Reluctantly, Emily agreed.  The friendship request was accepted and the message was, after more coaxing, finally sent.

A few more messages were exchanged, about presents received, and then Emily was reluctant to 'push it' any further.  I suggested inviting Mel to our house, Emily said no, Mel already had friends.

A couple of days later I was considering trying to get in touch with Mel's mum.  We'd also been friends during the junior school years and it was only when the kids no longer needed meeting at the school gate, that we fell out of touch.

Funny when you're thinking about someone and they actually contact you instead.  I got a text from Mel's mum asking for Emily's mobile number.  In the end us two Mums worked out a meet up, with the girls involved too.  With Emily's permission I explained her illness and how it affected her, Mel and her Mum were shocked and very supportive.  Emily was very anxious about starting up a friendship, which was why we'd arranged an activity, she worried she wouldn't know what to talk about.

The next day I took my kids and Mel out for a few hours and they seemed to have fun.  Back at our house they danced on the Wii and watched a bit of TV together.  Later Emily said it had been ok, it had been easier than she'd thought.

Last week saw a meeting with one of the Mental Health Workers and a number of people from school.  We went through all the worries Emily has and what might help in particular situations.  They had no problem with anything at all.  They have been so accommodating.  I thought when Emily asked to just do one lesson in the first week, that they would think it ridiculous.  Far from it, it didn't matter, whatever it takes to get her back in school with as little anxiety as possible.  I was amazed and immensely grateful.  They also agreed to move Emily to the opposite side of the school year so that she can attend some lessons with Mel.  Again, I thought it a long shot, but they agreed it was a good idea, it will give her a new chance at friendships away from the failed attempts last spring.

Emily has worked hard to get to where she is, and she will need to continue, but I have a much lighter heart knowing she will have a friend by her side.  So it turns out, Facebook's not all bad.

One more thing overcome

Family therapy this week was once again useful.  We started without Emily and in addition to the therapist had her main nurse, Tia in the room with us.  Tia is the one person who seems to hold the mini team together.  The problems we have experienced are in part due to her recent leave and extended period of sickness.  Tia knew what I'd said at the review and she was so apologetic that the original plan had not been followed.  I told her that it wasn't her fault, it wasn't her sole responsibility.  I have nothing bad to say about her.  She is the only one who calls me with updates and suggestions. Unfortunately, when she is not there, no one else picks up what she does for us.

I went over a few of my observations about Emily's behaviour at home.  There are times, I feel, that she is trying to get my attention.  One of my pet hates is the leg shaking.  We are all in agreement that this is not an involuntary reaction to stress.  To be honest it drives me to distraction.  I have now taken to leaving the room. To stay would make the chances of me saying something unkind highly probable.  Interesting, when I've done this, the behaviour has stopped.

I'd also noticed an increase in nightly toilet trips.  Emily insists she can't help it, she needs to keep going.  We'd tried to talk about it, she fears she may wet the bed.  I told her that she hasn't wet the bed since she was a small child and even if she did have an accident, no one would be cross.

When Emily finally joined our session the therapist started to explore some of the observed behaviour.  Whilst it may be upsetting for her it is important that it is confronted.  To ignore it is not helpful.  By talking about it, the staff were able to suggest that Emily has some CBT sessions focussed around some of her thought processes.

On Friday morning I took Emily to her mainstream school, we met an outreach worker, a school house manager and two students.  It was difficult and strained.  We had a walk around as if Emily was completely new.  The two girls chosen to meet her seemed nice.  The trouble was that Emily was looking at her feet, she hardly spoke and her eye contact was non existent.  The outreach worker and I chatted to the girls, what were their favourite lessons, how close to school did they live?  We worked quite well together, keeping it light and trying to include Emily and encourage her to speak.  We didn't really succeed.

On the face of it, you could be forgiven for thinking the visit was a waste and didn't go that well.  But, when I consider her reaction to the last visit, this can only be seen as a success, well at least an improvement.  She didn't get upset and angry, she didn't 'freak out'.  I told her she should be proud.  She'd gone in, stayed calm and made it through.

The outreach worker will be calling me next week for the next visit.  We are both thinking that an actual lesson may benefit, Emily would have something to focus on and she wouldn't need to make small talk.

I asked Emily if she'd like to come into the city centre at the weekend to pick up some panto tickets I'd reserved.  She shook her head, no way.  No way was she going to a busy town or going on a bus.

This morning  I took her up to the local shops for her hairdressers appointment.  We'd talked over options and she decided to go from mid length layers to a blunt bob.  The way I see it, if you have a nice haircut, clothes you feel comfortable in and your spots covered up, you can conquer anything.  I hoped I was right as I watched as the lengths of hair fall to the salon floor.

As we walked home, she swished her locks and kept touching them, laughing at how much shorter it was.  Now I turned my attention to her face.  She is such a pretty girl, but has terrible spots.  I think that's one of the reasons her head always points to the floor.  I talked to her about confidence.  I do worry that the kids at school will see the spots and it will be another barrier for her to overcome.  So I asked her to bring me the contents of her make up bag.  They were pitiful.

I took a chance and offered her a deal.  If you come to town on the bus, I'll get you a few bits of new make up.  I could see the fight she was having with herself, fear of the bus, of the busy town centre, versus NEW MAKE UP bought with someone else's money. 

A few hours later we sat at the front of the bus on the top deck.  We laughed at what we could see from our vantage point.  She was calm all the way, her leg didn't shake once.  Though town was a little busy, she managed, we picked make up, got the panto tickets and came home.  Emily said she couldn't believe she'd done it.  Such an everyday task to so many of us, had been a huge hurdle to her.  One more thing overcome.

Keep talking

By the weekend things had improved.  The real story was that when Emily went to visit mainstream school, they were unprepared.  They asked her questions, understandably.  When was she coming back?  Was she coming back next week?? Half days, full days?? Emily felt under terrible pressure.  The Unit had, unfortunately, not really had a conversation with school and as a result, the visit went badly.

We talked things over while we sat and wrapped Christmas presents.  Emily has no real 'wants' this year.  In a way that's been nice.  I've gone out and been able to look for things that she might like.  As a result she is actually looking forward to Christmas, lunch at home with her family and surprises under the tree.  This is an achievement in itself.  Emily looking forward to anything.  We are not a religious family, but for us Christmas is a time when the family comes together and, amongst other things, share thoughtful gifts, gifts that show how much we care.

Last week we had another review meeting.  Very few people attended this time.  I made no attempt to hide my feelings.  It was me who had instigated reduced residential attendance to aid Emily's transition to day attender, the unit had not.  Not only this, but the school visits during the last six weeks had been a total of one, when there should have been several.  I expressed my 'disappointment', which was met with embarrassment.  There are so many good staff in this place, but co-ordination and communication continue to let us down.

I am hoping we are now back on track and things will happen.  Emily continues to have ups and downs.  Ups show me the old Emily, downs show me a frightened child shaking with fear.

And me?  I have taken the step of weighing myself.  I have put 2 stone on in 4 months.  I am ashamed. Still, I am also determined to do something,  My low mood, and attempts to cope with Emily, have lead to alcohol and comfort food.  I can not hate myself for trying to find a way to cope, to feel just a small amount better.  No, in contrast, what I can do is say 'enough!'.  I no longer fit in any of my clothes, the time has come to take action.  Gone is the junk food, 'in' is the low fat, low carb eating regime. (I will not say diet)  Small positive changes can make a big impact.  I hope I can keep it up.

Tonight Emily asked to talk to me,  she was upset, worrying about school.  We talked for a while, thinking of real things we could do, strategies we could put in place.  Emily's concerns are around more school visits.  I told her that it was no use looking at the past, we can only affect the future. We need to look at her concerns and work out what solutions may be available to potential problems.

My life is so up and down and so is Emily's, but while ever we can keep talking we have a chance.

Better or worse?

Emily struggled at home on Friday evening.  Knowing I'd had a conversation with her father had obviously affected her.  We ended up watching a DVD of her choosing to pass the time until 10pm, definitely past her bedtime.

On Saturday Emily had the urge to clean my car, I followed her buffing with some scratch polish.  She was very animated saying that car cleaning, especially alloy wheels, should be part of therapy. It was nice to see her enjoying doing something.  It was even better knowing she'd asked to do it.

In the afternoon I suggested we sort out her bedroom.  The floor is strewn with 'stuff'.  There are random piles of it, there are carrier bags of it, there are gift bags full of it.  I guess this is really a typical teenage bedroom, but in my mind it made her room unwelcoming and chaotic. So many things didn't have a home.

At times she admitted she found the process stressful, but in the end, she agreed the outcome was worthwhile.  A room where most things, had a home.

Saturday night was easier.  Thank goodness for Casualty.

On Sunday my son and husband went for a bike ride.  Emily was adamant she didn't want to go.  Instead we stayed at home and she prepared the meat and vegetables for the slow cooker.  This had been part of her 'objectives' for the weekend.  Vegetables require sharp knives and I therefore found myself cleaning the oven to ensure I was within supervision distance.

Sunday night I returned her to the unit.  I was well aware that she had found the weekend hard.  Her spirits had been very low.  She had not self harmed and I was grateful for that, but instead there was a great sadness in her.

Yesterday, I heard nothing from her.  She never turned on her phone.  I decided to leave it.  If she wanted me she could call.  If there was a problem, the nurses would call.  Even so, I did not rest easy.

This evening my husband and I visited the unit.  Emily was nowhere to be seen.  One of the other young people told us she was in her room upset and nurses were with her.

When she finally came into the corridor, where we waited, she was flanked by two nurses.  This was unusual behaviour.  We were later than normal and I wondered if it was a reaction to this.

Once in a small meeting room the nurses proceeded to inform us that Emily had been found curled up on the floor of her room by another young person.  She was upset that someone, unseen to everyone else, was in the room with her.  As I sat beside Emily her left leg shook up and down constantly, she looked at the ground and she aggressively worked a stress toy in her hands. 

The nurses left.  Emily shouted that the person she could see was sat in the room with us and ran out.  When she came back with a nurse I talked to her about the daft things her brother had done.  He'd done cooking at school and had added a tablespoon of black pepper instead of a teaspoon... We'd had his cooking for our evening meal.  That was enough to make anyone laugh and from there we kept the conversation light and funny.

On the way home in the car, my husband started to try to analyse Emily's behaviour.  In the end I stopped him.  I don't know if Emily is really seeing things.  I don't know what on earth is going on and no amount of talking is going to change that.  One thing I do know, she doesn't appear to be getting any better, in fact I'd say she's getting worse.

Rollercoaster

My one and only post on Facebook this week made reference to being on a roller coaster and the wish to have a go on the tea cups instead.  One or two people knew why I'd posted this, but most did not.

Not only do I feel the ups and downs of this ride, but I feel I'm on one that's really rickety, the turns are sharp and frequent.  The ride is also in the dark and I can not predict what emotion I will feel next.

One moment I think Emily is making progress.  Last Saturday we went out bowling as a family and, whilst it could have been better, she got through it and it felt like an achievement.

Then she goes back to the unit and doesn't turn her phone on so I can't contact her.  When I visit on the Tuesday she's sullen. She tells me she seeing someone in her room. I'm bewildered as I thought the voices and visions had calmed down.  Now she tells me they never went away.  I find myself looking at my child and thinking, 'Is she telling the truth?'  What scares me now is that she could be exaggerating her symptoms because she wants to stay in the unit. The unit is not the real world, the unit is not stressful, for her the unit is safe.

Her nurse is also concerned that not everything rings true, but what do we do?  Is she telling the truth or not?

On Wednesday the unit called me and suggested Emily come home for the night.  I was happy to agree and went straight from work to collect her.  I was really looking forward to having her at home instead of a hour visit in an uncomfortable chair.  As I drove to the unit my head was filled with warmth and expectations of cuddles on the sofa. 

The understanding was she could go back to the unit at 9pm if she didn't feel able to spend the night, otherwise we'd take her back the following morning, just in time for family therapy.

She was strange at home.  She put on some 'catch up' tv but then disappeared from the room. A little later she said she was going in the shower.  She'd got home at about 6.30pm, by 8.00pm she was obviously in distress and I took her upstairs to my room so we could talk on our own.  She talked about not being able to cope, seeing things and wanting to go back to the unit.  She told me she'd thought about drinking nail varnish remover in her room.  She told me she'd gone in the shower with a dinner knife and tried, in vain, to cut her wrists.  Then, she admitted that she had hurt herself since coming home.  I had thought I'd found all the hidden pencil sharpener blades.  It seems there was yet another concealed in her room.  Despite having worked hard to let her arms heal, she had now undone all that work.  Pulling up her sleeves the cuts were all back just centimetres apart, her legs had not gone unpunished either.

I was numb.  I'd been allowed my daughter for an extra night and I'd failed everyone.  She didn't want to stay the night and, if the truth be told, I didn't want her to stay either.  I didn't want the responsibility.  I knew her room at the unit was controlled and she would be safe. I guess that was her point.

I called the unit and explained.  My voice was quiet and lifeless, I felt lifeless.  I couldn't keep her safe.

Social Services have been in touch following on from the issues around Emily's father.  I spoke to them at length.  They were satisfied that the children are now of an age to make their own decision if they want to see him.  They felt the children were no longer at risk and I agreed with them.

None of the professionals working with Emily has spoken to her father, I asked this week if this was going to happen.  I am struggling to explain to him why she is not wanting to see him. The unit advised I could talk to him as they had no immediate plans to do so. Deep joy.

The phone rang on Friday night.  I knew it would be him so I got to the phone first.  I had thought long and hard about what I should say to him.  In the end I said that therapy had brought out unpleasant memories of childhood for Emily, which involved him.  Because of this, she wasn't wanting to see him at the moment. I didn't want to get into the whole "she said you did this" charade. I told him that it was likely he would be invited to family therapy to address some of these issues.  He said ok and asked to speak to our son. I'm not sure what to make of that.

I have to admit to very uncharitable thoughts on Friday night.  If it was me I would be frantic, wanting to know what the memories were about, what I had done,  how I could put things right.  As I went to bed I really hoped he was worrying and feeling ashamed, but part of me thought it was just as likely, he wouldn't have a clue about the part he's played.

Hope becomes Hopeless

I don't understand.  The very people who are supposed to help Emily get better seem to be doing just the opposite.

There were trips planned for this week from the unit.  Emily was really anxious, not wanting to go.  When I dropped her off yesterday a nurse took her in because she was upset.  The nurse told her that no one would force her to go.  But what did they do?  They made her go, told her she had no choice.  She sat shaking most of the time, biting her lip.  As far as the staff were concerned "she's been fine, no problems".

I had a telephone conversation on Sunday with her named nurse.  He is the person who is supposed to have weekly chats and sessions with her.  He is hardly ever on shift when Emily is there.  She has had no sessions with anyone except the medic about her medication.  This weeks trips were worrying enough, but next week they are scheduled to go to Pleasure Island.  I told her nurse that Emily wouldn't be able to cope this, that she would be petrified.  He said he'd talk to her and she didn't have to go if she really didn't want to.

Today I spoke to that nurse again and his tone was very different.  It was quite clear that he didn't actually care what I thought.  I told him Emily's symptoms were increasing again, that our evenings with her are awful.  He didn't show any concern.  I asked if she would be able to miss the Pleasure Island trip and was told no, they wanted her to go.  After all, he told me, she'd been fine on today's trip, adding that she was being a typical teenager and seemed bored.

I didn't know what to say.  I told him that if he expected her to go next week, he'd better talk to her and explain his reasons.  I knew Emily would be really upset, but what else could I do. I hoped he'd listen to her.

Emily was in her room when I got home from work this evening, Nannan was downstairs. After Nannan went home it wasn't long before she was downstairs, crying hysterically.  Why was no one helping her, she wanted to know?  No one was talking to her. No one understood how she felt. She trembled and thrashed around, sobbing.  It took a while for her to show me the cuts and scratches on her legs.  It looked like she'd repeatedly gone backwards and forwards through brambles. Whilst they weren't deep, I'd never seen so many marks on her.

I can understand why Cahms want the children to do activities, but they have given Emily no strategies for coping.  This is a child who barely leaves the house and they want her to go to a packed noisy theme park.  Give her some tools, take it slow, build up her confidence!!  Why are they doing this?  Why won't they listen to me?  I am not a neurotic mother.  I am the mother who has to pick up the pieces when she gets home. The mother who has to look at the marks her daughter makes on her skin because she can't cope. The mother who is seeing the last glimmer of hope fade away. I am the mother who hears her daughter say she can't carry on.

I may not be medically trained but I know when something is wrong.  They are trained, why can't they see it?  Why aren't they helping?

Wedding Day

On the eve of my Wedding, my niece came to stay overnight, it was nice to hear laughter coming from my daughters bedroom, rather than crying or screaming.  My husband to be and my son slept at my Mums.

Emily came into my room several times during the night.  Her panic about getting through the day was increasing.  I hardly slept that night, the same as so many nights before.

In the morning Emily switched between panic and practical. I tried to keep her calm. I did her hair and foundation. I  set her little tasks to try and keep her busy.  She helped with the smaller bridesmaid and helped me get into my dress.  She ran errands from our house to my Mums a few houses away.

I felt that I wasn't ready, I'd just not had chance to do all the things I wanted to before I left.  So much time had gone into other things I'd felt so rushed.  When the taxi had arrived I hadn't even got my dress on.

We left the house with rows of neighbours lining the street, cameras snapping away.  Some of them know about Emily's state of mind, but not all.  It was lovely to see them.  They laughed as I locked my own front door and tried to fit the key in my little bag.

I had no flowers, I decided to do things differently.  Handbags for me and the girls instead.  How else would you carry your mobile phone??

Emily managed really well through the ceremony and photo's.  Cracks started to appear when seated at the top table. She sat between her new Step Dad and my Mum.  Between them they did their best to keep her calm.

As the day wore on, Emily found it more and more difficult.  It seemed that the arrival of the evening guests was the catalyst for her rapid deterioration.  New faces, the start of loud music in the main room were real problems for her. 

It was not long after that she came in sobbing.  She'd been barefoot in the garden and had stepped on something sharp. Blood now covered her shoe and the hem of her ivory dress.  I was the Bride, expected to mingle with my guests, but I had to be a Mum and that was more important. I cleaned her foot, but I couldn't stop her crying.  It had been the final straw, she sobbed that she wanted to go home.  I was close to sobbing too.

My evening guests were still arriving, for me, going home wasn't an option, we hadn't even done our first dance yet.   I think my wedding day came to an end around then.  It was still early, but I'd had enough.  It wasn't her fault, but it's hard to go back to 'having fun' when you know how much your daughter is hurting. 

My Mum and Dad were taking the kids home at the end of the night.  I had 2 nights in a local hotel as my honeymoon and I felt guilty about it.

Mum took over with Emily.  She desperately wanted to see our first dance and worked on keeping Emily calm enough to last until then.  My Brother in law offered to run them home as soon as our dance was over and that seemed to help.

I was so immensely grateful to all my family that night, they did all they could to keep things moving as smoothly as possible.

We did our first dance and we enjoyed it, but after, I had nothing left in me.  I moved around the tables trying to make sure I'd spoken to everyone, asking the same questions, smiling the same weary smile and barely hearing the replies. I tried to dance to the music but I was tired and I'd hardly eaten.

The clock seemed to slow down, but gradually we approached 11pm, our time to finally depart.

Later, alone in our room, I lay my head on the chest of my new husband and I sobbed.  He could have thought I was regretting our marriage, but he knew this wasn't the reason.

He told me to let it all out as he held me tight and that's exactly what I did.

.

Things are not always as they seem

Weeks one and two were hard.  Emily didn't want to go to the unit.  On some days she cried or screamed not to be left there.  But despite her protests I knew she needed to stay if she was to have any chance of starting to make a recovery. 

Regardless of her thoughts when she went in each morning, she came out at 4pm almost smiling, not because she was now free to go, but because, actually, she'd enjoyed her day.  She'd be quite chatty in the car home, telling me what the other kids had been up to, what activities they'd done and who she was starting to make friends with.  Until the new school term she will only be going three days a week, giving her a couple of extra days at home.

By the end of the second week I thought I could see a change in her.  She seemed more calm, the 'episodes' became much less frequent, I actually thought she was doing well.  Not better in such a short time, but definitely calmer and more in control.  As my Wedding day was moving ever closer, with so many things to do, Emily's new found calmness was just what I needed.

But things are most certainly not as they seem. On Monday night I remarked how well Emily was doing.  She let me in to a secret.  Her health had not improved, but her acting skills had.  Once she'd admitted that she'd been hiding her problems and that she'd done it for my sake, the flood gates opened once more.  She was trying to shield me, she could see how busy I was with work and the Wedding and was trying to give me 'a break'.  I felt like I had failed her.  It had suited me to think she was feeling better.  It was true, I did have so much to do, but I should have realised.

Since she's opened back up to me the episodes have returned and they are ferocious, longer, louder and more heart breaking than even before.

Her Medic is hoping to start medication next week.  I'd begun to think that maybe she'd be ok without it, but now I see her pain again and I see I am wrong.

I know the thought of the Wedding is adding to her pain and fears, but I can't afford to cancel it and I do believe that when she gets caught up in the day she will enjoy herself.

I hope I am not wrong about this too.

Day One?

Today is a day of very mixed feelings, its the day Emily's treatment will start.  Part of me is relieved that we have survived and made it this far, but I know this is also the beginning of a hard path for her and one she has to take no matter what.

On Sunday morning we should have been running Race for Life together.  Sadly Emily couldn't face being out of the house with so many strangers. So our group of 3 became 2 and instead I gave her my medal when I got home.

By Sunday evening I had started with a nasty head cold.  The drawback to something like this, apart from obviously feeling rubbish, is that you don't want to pass it on.  This has made it very difficult to comfort Emily in the usual way of hugs, kisses and holding hands.  I was sneezing with alarming frequency and in between times constantly blowing my nose so we kept to opposite ends of the sofa. 

Monday I felt even worse and at a time Emily needed me I couldn't be fully there for her.  I knew she worried about going to the centre and as the day got closer her fear grew and she got more and more upset about it.  I could only offer her short hugs and words from a distance.

Feeling no better on Tuesday meant a day off work.  This is almost unheard of for me and especially not for 'just a cold'.  Its ridiculous, I am totally shattered, coughing and sneezing with a pounding head and even dosing myself up on whatever medication I can has made little difference. I'm beginning to wonder if the weeks of worry have just left my defences so low that there is no fight in me for stuff like this?  Don't get me wrong, I'm not trying to feel sorry for myself, I'm just blooming annoyed that a) I'm ill b) I can't shake it and c) It's stopping me doing the things I need to do.

So back to today.  Admittance was 10.30am.  Emily flitted from being upset, doing practical stuff like getting showered, back to being upset.  I was surprised though that when the time came to leave,I got her into the car, with me and my cold, with no real problems.  I'd honestly thought I might not be able to physically get her out of the house.

She walked into the centre calmly, even going out and in again to retrieve my forgotten tissues from the car.

Once in the admittance meeting with four staff members it was a different story.  She wouldn't look at anyone and I became almost like an interpreter as questions were asked.  Her answers were barely audible and as her head hung down there was only me who could make out what she was saying.

All through the meeting she was crying and whispering that she didn't want to stay and didn't want me to leave her.  The staff left us alone for a few moments and then offered us a tour.

The centre is very well equipped, with school rooms, leisure room, quiet area's, dinning room etc and the staff are kind.

When the time came to part, Emily started to cry again and begged me not to leave her.  I held her face in my germ infested hand and asked her to look at me, really look at me.

I told her I loved her, I told her I was proud of how well she was doing.  I told her that those bully's were not going to win because she was going to get the help she needed to get better and get her life back.  I told her I would be there at 4pm to bring her home.  I opened her hand and pointed at the felt heart keyring and told her that the heart was proof I would still be with her and I would be thinking about her all afternoon.  I told her she was safe now and the centre would help her get better.

Through all this I did not shed a tear.  Not until I was out of the security doors and in my car did I sit and sob.

What does the future hold?

We have a date for Emily to start as a day patient; a week on Wednesday. 

Emily cried when she read the letter.  She knows she needs the help, but the realisation that in a short time she will spend days away from me is hard for her to cope with.  There is also fear of the unknown.

Our daily routines continue much as before, managing anxiety attacks, whilst trying to fit in working, shopping and wedding organising.  My wedding, now just four weeks away, is also a source of anxiety for Emily.  My hope is that she will get caught up in her 'role' as bridesmaid and this will be enough of a distraction to at least get her through the ceremony.  After that, we'll just have to take it as it comes.  We will be surrounded by family and friends who will all understand and lend a hand if needed, I just hope it won't come to that.

News has reached us, for while now, that children at the new school are wanting to know where Emily is and why she's not at school.  Not much of a surprise given how long she's now been off.  Unfortunately, she has no real friendships so isn't able to confide in anyone there.  I'm also not sure if it would be the right thing to do anyway. 

The school are getting the children to do a GCSE next year in Y9, Emily had chosen History.  The more I think about school the more worried I get.  I know she is a good student, but I have this sickly feeling in my stomach.  Its not even likely that she will go back at the start of the new school year, how is she ever going to catch up?

Its not just the study side of things though.  There will be a day when she has walk back into that school and there will be questions.  Not only will she have to deal with this but she'll also still be fighting to control her fears.

What does the future hold?  I just don't know, I need to take the advice I give to Emily I think, one day at a time, just one day at a time.

Are we there yet?

Today finally saw myself and Emily waiting for our assessment at the residential unit.  Emily became more and more nervous so we tried to make light of our situation by laughing at theTV.  I'd never had to sit through an episode of 'In the night garden' before.  It seemed to revolve around lots of charactors with too short arms trying to use a ball, still it provided light relief.

We were taken further into the warren like passages by a Nurse and a Specialst Doctor.  They were both very kind and apologised for keeping us waiting.  Emily was very sullen and for while kept her head down and angled away from the Doctor.  I sat next to her and held her hand, the hand with the felt heart keyring in it.

The Doctor wanted to know why we were asking for help.

I started to speak about the 'episodes', the self harm, the voices, the people she thinks she see's, the fact that she can rarely leave the house and if she does, it needs to be with me.  I explained that she can no longer go to school or see the one friend she has left.  I described what its like when her legs are kicking out in pain, when she screams 'mummy they're coming for me!' 'mummy they're hurting me, make it stop!!'  I explained that these were the times you would see her with handfuls of her own hair tightly clenched in her clawed hands.

Amongst my input, Emily managed a few words of her own before the Doctor moved on to why this was happening.

Between us we told her story once more.  We told of the confident girl who left her junior school and unbeknown to me, was teased even on transistion days to the new Comprehensive. We spoke about the verbal taunts and name calling which started pretty much straight away.  We relived the pushing and kicking from boys and girls in the corridors between lessons, which happened several times a week throughout year 7. I told the story of things being thrown at her in the classroom.

I explained the additional problems resulting from a forced change in her friendship group, which resulted in people Emily had called friends being nasty and vindictive.  I talked about the facebook bullying, the BBM bullying and the liveprofile bullying. Finally Emily spoke about the year 11 boys who attacked her, got her by the throat and hurt her. It was clear to see the shock on the faces of the Doctor and Nurse when I explained school did nothing to help.

Emily was really starting to struggle by now,  through her tears she kept asking to go home.  I sat closer, explaining that we wouldn't be long, but we needed to talk if we were going to get her better.  I told her how well she had done.

They asked about suicide.  Emily has often said she had made plans but didn't want to tell me what they were.  Today she finally agreed to speak about them, but only after I said she could say in front of me and I wouldn't be upset.  Her preferred methods are taking an overdose, drinking something toxic or hanging herself in the local woods. I did as I promised, I didn't get upset.  To be honest I didn't feel anything, it feels like its nothing new, these are methods I guess are the most common, shocking yes, but still common.  In my heart I don't think she would do it, but I may be wrong.  I manage the risk by never letting her be alone, except when she's in her room and even then I'm monitoring the situation.

The outcome of the meeting was that they could take her as a resident, but felt that Emily was too dependent on me and to remove me so completely would be counterproductive.  I have to say I agree.  The Doctor looked me in the eye and said if I couldn't cope and needed her to go in as a resident this was possible.  I am struggling, really struggling, but I didn't want them to know that.  I couldn't put Emily through that just because I'm not strong enough, I will have to cope. 

So we settled on Emily going every morning and coming home every afternoon, a bit like school hours.  Unfortunately, whilst there is room in the residential side of the unit, there isn't in the day only provision.  We now need to wait for a place in the next few weeks.  So it is likely that when other children start their summer break, Emily will be starting her days at the unit. 

We left feeling drained.

Later, at home, I spoke to Emily about the outcome of people who overdose with the likes of paracetamol, she thought they would kill her, I explained the reality.

So are we there yet? No, not really.

Like a pebble

It's been a mixed few days. On Friday Emily leaned on me heavily and like many days, we never left the house. At one point she was adamant the phone was ringing and couldn't comprehend the fact I couldn't hear it. So convincing was she, that 'they' had left a message, I caught myself glancing towards the answer machine when I walked into the living room.  Of course there was nothing there, but that didn't stop Emily believing otherwise.

We did get a genuine call. It was from the residential ward. The Consultant who should be assessing Emily isn't available on the 29th. Our meeting has had to be moved to the following Monday. It doesn't sound much, but to me its another weekend to get through.

Emily took the news ok. I suspect this is due to her now fearing the appointment. Several times recently she's said she won't be able to get better without me being with her. She's scared of going for treatment. But I can't make her better and I truly believe they can and will. Emily does not agree.

Saturday came, and with it another party. This time a 16th for my niece.  There was pretty much a repeat of the anxiety she'd shown before her brothers party.  In the end I made our excuses to my sister over the phone and calmed Emily down. To be honest a part of me couldn't face going either. I am so tired, I'm really struggling to sleep.  I feel I'm on a treadmill and if I don't keep putting one foot in front of the other my world will finally collapse around me. I have blinkers on too, I don't look around. Nothing interests me and nothing gives me pleasure, I just keep moving forward.

Despite a disturbed sleep I awoke with a little energy on Sunday. My son was at his Dad's and Emily seemed nicely occupied. She was playing computer games, surfing, watching tv etc. I decided I might feel a bit better if I did some of the house jobs I'd been trying to ignore.

I was pleased that Emily seemed to be having a better day. I should have known better, I so wanted some time to myself, even if it was doing jobs, I guess I lowered my guard.

It was towards bedtime that the crying started again and the pleas for the voices to leave her alone.

I talked to her and eventually got her to go and get ready for bed. It was then that she asked if she could tell me something. Her eyes were downcast in shame. She admitted that she had cut herself. I asked what with? It turned out she had hidden a spare razor before I'd taken the packet off her. She was crying that she was sorry, but that she couldn't help it.  I told her I wasn't angry, but that I thought she'd had a better day.  Emily admitted that she'd had a better day because she'd cut herself.  It made her feel better, helped her cope.


There have been more episodes today, and they have lasted longer.  She shouts that they are getting her, coming for her while she kicks out with her feet and screws up her eyes.  I hold her really tightly, hoping to keep 'them' away.  I can't.


I can feel myself getting weaker. I am like a pebble constantly being eroded, there is no let up on the waves crashing over me.

Torn in two

At times I have to remind myself that I'm actually a Mum to 2 children, not just one.  I try hard to make sure my son doesn't feel neglected, but as Emily consumes more and more of me, its getting increasingly difficult.  I try to talk to him, I tell him that I'm proud of him and that I love him, but I fear it isn't enough. 

It was his 12th Birthday this week and I found myself running around before and after work, to pick up extra little gifts for him.  I guess I fell into the trap of trying to show my love by spending money.  But so many things have been cancelled recently, our holiday for one, that I so needed to see him happy on his Birthday.

Its clear that Emily's illness is still progressing.  She still feels 'they' are after her.  She still hears them talking to her and laughing at her.  She still sees them in the house and her room.  Now she sees them writing taunts on the walls and they trip her up. 

I should have been at work on Tuesday, but Emily had an anxiety attack in the morning at the thought of having to go out with Nananan (she had some appointments). In the end I arranged to work from home and stayed with her.  I managed 2 hours work during the day and made my hours up at night.

I made it to work on Wednesday and Thursday, but I felt exhausted, like I was underperforming, not pulling my weight.  I'm fortunate, my team are great and supportive, but I still feel bad.

Today was the day of my Son's bowling party. Emily started to get anxious and by midday she was asking me if people would put something in her food at the party.  This type of comment is becoming more common.  Whilst the 'grounding' techniques do work sometimes, they don't help with everything.  More and more she says the same thing over and over again.  "I don't like it Mummy, make it stop. They're hurting me Mummy, they're in my head".  I'm so frustrated because I can do nothing, nothing to make it stop. 

So neither of us went to the party and a sad little boy went off with his Dad, my partner and Nannan.  He wanted me there and I let him down.

As each day passes and Emily leans on me more and more, the less I become a person.  Does that make sense?  I am retreating, needing to preserve what little of me remains until help arrives.  But each day it gets harder, I am never alone, I am never free.  I can not heal myself.  I need to support Emily, I need to be a Mum to my little boy, I need to be a partner and I need to go to work and actually do work.


So am I torn in two?  Or am I torn in three or four??

Say it with felt

The weekend has been tough at times, but we have managed to keep Emily busy.  I've basically just sat in the living room with her. I've painted and she's made her felt creatures, with input from me where needed. The TV has been our constant companion.

She definitely got into the sewing and it certainly helped her get through the day.  After a basic design first, she moved on to something more elaborate.

As I mentioned in my last post, she wanted to create something that could have been 'normal' once, but wasn't anymore.  I wondered if I should be sad by her creation, but I decided, actually, I quite liked it.

I told her I thought it was a good example of something not having to conform to being the 'norm' in order to be lovable and fun.  I said none of us were perfect and that's absolutely fine.

Unfortunately nights are another thing.  Emily regularly sleeps badly, she has nightmares and thinks if she goes to sleep, someone will be in her room to get her.  We hug her, we talk and reassure and we check out her room to prove no one else is in it.  You can see in her eyes that she doesn't believe you.

Today Emily, my Mum and myself went and met with the Dr at CAMHS.  We were joined by a Psychologist who talked us through some techniques we could try to help Emily.  It's called 'Grounding' and I think some of it could help.  We found that many of the things we do in part anyway.  Talking, hugging and reassuring Emily that she is safe.  One of the other techniques is to talk to her, tell her where she is, who is with her, what is in the room etc.  The idea is that when she's reliving bad experiences, its a way to bring her back to the present.

The other idea was a 'Grounding' item.  It's probably wrong of me to say it, but it seems a bit like having a lucky charm.  Its the idea that you have a small item which means something to you.  You carry it around and in times of anxiety you hold it and try again to bring yourself back to the present.  Emily and I discussed what she could use for this. In the end  I decided to make something.  Keeping with the current theme I used some felt and made this.

It's small enough to fit in the palm of her hand.  Emily loves it and can't believe how attached she has become already.  It was a good idea.  I'm very grateful to the Drs for giving us some tools.  I just need to hope that we can keep it going and the novelty doesn't wear off.

On a much lighter note, my partner said to her.  "It's even better because its 'heart felt'"  I groaned, but it took Emily a while to get that one.  It was nice to see her laugh.

The wait goes on

Everyone tells me that Emily needs medication and therapy, but this does not seem to be forthcoming.
I've been phoning all week since the Dr said she was referring us to the residential unit.  Obviously we have had the bank holiday weekend in between.

It didn't help that I was committed to an Art Exhibition over the four days of the Jubilee.  Emily and my son should have been going away with their Father, but there was no way that Emily was going to be able to do this. Her father does not understand.  She had an 'episode' when he was here recently and his reaction was just to pretend he couldn't see her crying on the sofa.  There was no way he would be able to support her and she knew that all too well. The result was that while my other half and I were manning the exhibition, my Mum was looking after Emily.

As soon as everyone was back at work on Wednesday I started chasing the residential referral.  I was told that it looked like there was an assessment by the residential team scheduled for Friday the 8th, but the reception team would chase and confirm.  By Friday morning we were still waiting.  It became obvious that an assessment the same day was unlikely.  I was so annoyed with them.  I'd called everyday and had assurances that I would receive a call confirming what was happening, but nothing came.

On Friday I'd almost reached breaking point.  We'd all been sat in the house for 3 days waiting for calls that never came.  I had a little girl who decided that no one cared.  No one was calling back so that must mean  that she was insignificant, right?  So so wrong :(  Why don't people realise the impact of their actions??

My partner suggested I get out of the house for an hour or two.  I went to the local shopping centre.  Emily had shown an interest in doing crafty things and I wanted some bits and pieces too.  It was nice to be away from the house and not have a real agenda.

I did a little shopping for everyone.  I'm conscious I don't want to leave my son out. The only thing I seem to be able to occupy Emily with is, constant re-runs of TV series (outnumbered & primeval) and crafty things like paint by numbers.  So I bought my son a paint by numbers too and got Emily a pad of water colour paper.

The day before we had managed an hour at Hobbycraft.  There she'd selected felt and stuffing to make weird creatures.  I don't care what she makes as long as I can keep her occupied.  Strangely though, she's made a kind of doll.  Her remit was "something that was once normal, but isn't now"  I think that says a lot about how she feels.

While I was out shopping I finally got a call from the residential unit.  They told me Emily's assessment would be in 3 weeks time.  I accepted this meekly and only cried after the call terminated.  How the hell were we supposed to get through the next three weeks?? I didn't understand.  I felt that the system was failing us in a massive way.

I texted my other half.  As usual he voiced his support and optimism that we'd get through.  I wasn't so sure, I wasn't sure at all.  Weary as I was, I couldn't see how I could get myself and Emily through another 3 weeks.

The shopping centre is not far from CAMHS.  I walked with a tear stained face through the shoppers, out to my car.  I sat in the car and sobbed unchecked.  I decided I needed to tell them how I felt, I needed them to know we weren't strong enough to get through three weeks.

I drove through the tears to CAMHS.  I faced the receptionist and tried to speak.  As soon as I did, the emotion took over and the tears flowed unchecked.  I was ushered into a waiting room.

After a few minutes the Dr we'd seen before popped her head around the door and kindly beckoned me to follow her.  Once in a room I found myself apologising over and over for my behaviour.  The Dr understood why I was there and told me she was there to help me whenever I needed it.

There is nothing she can do about the three week wait for the next assessment, but she has offered to see us in the meantime.  On Monday Emily, myself and my Mum will be off to CAMHS.  Basically, we need to equip ourselves to be able to keep Emily safe until the residential unit can take over.

I sit here this evening, having shared a bottle of wine with my partner and then having moved onto brandy, and I am grateful.  Grateful that the man, who is not Emily's Father, is kind and good enough to get right in there and help her in the same way I do.  We are broken in many ways, but we are also blessed.

Another day off school

Emily sat on my bed this morning telling me the sickness today wasn't like the normal one.  Usually she felt sick, but knew she wasn't going to be.  Today she was really having to hold it back.  She said she felt dizzy and couldn't see properly either.  Maybe a bug, perhaps a migraine?  Whatever it was she wasn't going to make school.  She seemed genuinely disappointed about not being able to go.  In view of this I didn't feel so bad leaving her home with Nannan while I caught the bus for work.

By mid morning I received the first suspect Live Profile message.  Emily told me she'd "wanted to do the thing she'd promised you I'd never do.  So I found a cat to cuddle instead"

The promise relates to me pleading with her not to cut herself.  I told her I didn't like the fact that she hurt herself, but I tried to understand.  I asked her to promise she wouldn't cut herself as I wouldn't be able to cope with that.  I cried when I said it.  She promised.

Still, seeing that she'd thought about it upset me. I phoned her and she seemed to be ok.  I sent a text to my Mum asking for her to keep an eye on Emily, especially if she disappeared to her room.  I didn't want to tell Mum what my concerns were, but it appears Emily told her herself later in the day.

Home from work I was struck by her pale appearance and empty eyes.  She'd been with Nannan to the GP for a repeat of her anti sickness pills.  As usual  the visit had left her angry and upset at the lack of understanding of someone who was supposed to help.

Clinging on to me she repeated, "its too hard, I can't do it anymore"  She talked about wanting to step out in front of cars, that she'd been so close to doing it. But she pulled her foot back and I was quick to point that out.

I'm very tired, I long for her to be in bed, so I can open yet another bottle of wine and lose myself in chocolate.

6th May 2012

Emily's mood has deteriorated during the day.  We managed a couple of hours out as a family, but then she wanted to come home.  For the rest of the day she has been drawing pictures.  Her in a cage, her crying, her drowning.  She told me she really wanted to hurt herself but was trying not to.

On most days I dread bedtime.  It's the time I have nothing left to give and she needs more and more from me.  Inside my head screams, outside, I hug her and I talk calmly.

I feel very isolated.  As a big Facebook user I find I am in hiding. My status updates mention what the cats have been up to or some other pointless nonsense.  My daughter is on Facebook.  How can I possibly tell the truth??  So I hide in my real world and pour it all out here.  I wonder whether Emily would hate me for writing this.

I firmly believe that leaving Emily sat in the house all weekend is counter productive.  You can almost see the walls closing in around her.  In fact that was one of the phrases she used herself last night.

Its' Bank Holiday Monday tomorrow so I asked her this evening "Why don't you think of something nice you'd like to do tomorrow"  her reply was "die"

What the hell are you supposed to say to that?