Thursday, 21 June 2018

Where we are

Havent blogged at all this year. And i have received some lovely messages asking how things are and if we are ok so i thought i'd blog an update.

Things are still difficult. 
The last time i wrote in December last year i had discharged K from a cygnet hospital hundreds of miles because she was suffering terrible bullying from another young person and her mental health just seemed to be getting worse. 

On her return she seemed like a different person. She had been prescribed Risperidone and Clamazapam whilst with Cygnet and was a muted version of her self. CAMHs here in Somerset weren't really happy with the meds or the doses and so immediately changed her prescription and Christmas was terrible as she struggled through her Clamazapam withdrawal. She suffered from sweating, loss of appetite, fatigue. it was awful. 
But she remained on Risperidone. 

In the new year it was decided at her care plan review that DBT was the best course of action for K. She had always fought against doing the DBT course as she finds spending time with other young people very difficult. But she reluctantly agreed and did try really hard to cope. However her mental health just seemed to be getting worse. 
At the same time i approached Talking therapies for some support and was offered a webinar in which i could log into each week and listen to pyschologists offer advice on managing depression and anxiety. This didnt work for me. One because my depression and anxiety isnt generalised it is as a result of our lifestyle and two with Ks appointments and needs it was very difficult to log on at the specified time as it clashed with Ks DBT appointments. i did try to log on at the train station but could barely hear anything and it drained my mobile battery so no good! What i needed (and still need) is someone to talk to but that is not available.

In March Ks mental health continued to deteriorate. We had a short break booked for the end of the month and K told me that this was the only thing keeping her going and she couldn't guarantee she could stay alive once we returned. She had secretly stopped taking her risperidone because she was experiencing voices/intrusive thoughts telling her they were poisoned. Camhs advised me to put a lock on the bedroom door and to lock all external doors to prevent her leaving the housing while i slept. 
I barely slept and my anxiety started to become more heightened until i decided i could not do this any longer and took her to A&E.  the advice on a mental health crisis for young people is ' if you do not feel you can keep her safe then go to A&E'. im not sure if this is the same for adults.
We sat in A&E for fours hours until finally at 1am we were taken to the children's ward. We remained on the children's ward for 25 days waiting for a bed for K in a unit. 
I made it very clear to CAMHs that i would not accept a bed for her more than a 100 miles a way. Some people have voiced to me that this was an unreasonable request. but i didn't care! 

We had done the whole 225 miles away scenario which had been a pointless and wasteful experience nothing was gained from this other than a private hospital chain making a hefty profit form the NHS purse. I wasn't prepared to put either of us through that again. 
I refused a bed in Cheadle (even further than the previous hospital!) and after a lengthy discussion with the CAMHs manager, a few emails to cover my back and show my logic and the thought process to this decision, a miracle happened! a bed became available in a hospital in our own town. 

K has been at this hospital for nine weeks. 
She has regular home leave visits which have been variable in their success. It seems to me she feels safer when she is locked in the unit, i dont really know how to offer her that level of safety at home.
She is not taking any medication at all. She now refuses paracetamol or ibuprofen for fear that they have been tampered with and is no longer on anti depressants
Our experience at this unit has been so much better than the one in Manchester. 
It is an NHS ran unit and im not sure whether this is why i find it so much more communicative and inclusive or because she is closer to home so the camhs team can work with the hospital in a much better joined-up way. 

But progress still feels slow. The Psychology assessment to determine the way forward for K is still being formulated, her voices around medication and perceived threat are yet to be addressed. Since stopping her fluroxetine she has been angrier and lower in mood and her suicidal ideations are still very much present.  

But in other ways she has made massive progress and i am very proud of her. She has confronted her issues around being around her peer group and has made friends, she has began to open up a little and talk to professionals about her thoughts and has began to let previously suppressed emotions come to the surface. 
Something that she finds incredibly difficult to do for fear of judgement and ridicule.

As for me, i am struggling through. i find it very difficult to do the normal things i should be doing when she isnt here- like preparing meals or spending time outside the house. i guess my identity is so enmeshed in my caring role and keeping her safe. its very difficult to motivate myself to do these things unless shes on home leave and its for her. I know this frustrates my son but i dont know how to stop doing this. 

My own health is now under the spotlight. i developed a little fatty lump above my eye in February which google told me was caused by my cholesterol. 
Blood tests confirmed that my cholesterol had risen quite drastically in the last two years along with my weight and my blood pressure. The aches and pains, which started off occasional but are now every day and make me like im 80 yrs old rather that 40, which i had put down to being less active and heavier could be a diagnosis of Fibromyalgia. 
I am reluctant to pursue a diagnosis for Fibro even though at times i can barely walk down the stairs or get up from a sitting position for reasons i dont want to explore right now. 

So thats where we are, no further forward than six months ago really but still plodding on. 

I'd like to say thank you to those that have messaged, and as always im always here if anyone thinks my experiences can help with anything they are going through x

Friday, 29 December 2017

Reasons to Stay Alive- Matt Haig Book Review and Giveaway

What does it mean to feel truly alive?

'This is the true story of how Matt Haig came through crisis, triumphed over a mental illness that almost destroyed him and learned to live again. Moving, funny and joyous, Reasons to Stay Alive is more than a memoir. It is a book about making the most of your time on earth.'

Reasons to stay alive is a very personal and honest account of Matt Haig's experience of depression and anxiety. The book tells the story of a deep and debilitating illness and the effects it has on the sufferer and his loved ones. 
The book takes the reader through the darkness of depression and anxiety as well as the light at the end of a sometimes very distant depressive tunnel. 
The book is written in small chapters, which makes it easy to read and references wise quotes from philosophers, artists and authors. 
The book breaks from the convention of your average memoir with the Matts lists of insightful and amusing thought patterns and then and now conversations which are very relatable. 

I really enjoyed this book but I think it's important to recognise that this book is a story of someone's journey and is not a self-help book. 
Anyone that reads my blog will know that I am painfully honest about the struggles that myself and my daughter face through her battle with mental health and I feel that Matt Haig's Reasons to stay alive delivers an honest and relatable account of the absolute misery that is depression and anxiety.

I especially appreciate Matts account of anxiety and how controlling and life-changing anxiety can be. The chapter named 'The Art of Walking On Your Own' mirrors very accurately my own experiences for anxiety when I was in my 20s and behaviours I now see in my own daughter.

On going to the shop alone-

'This is crazy
This is the craziest thing I have ever done
Its just a shop
It's just a shop you have been in, on your own, five hundred times before
Get a grip. Get a grip. But on what? There is nothing to grip onto. Everything is slippy.
Life is so infinitely hard. It involves a thousand tasks all at once. And I am a thousand different people, all fleeing away from the centre.'
Unless you have experienced Anxiety, it is very difficult to understand the irrationality and control it has over your life and I think this book depicts anxiety in a way that makes it easier for those supporting sufferers to understand the thought processes of those suffocated by it.

There are two things that I really want to point out to the potential reader of this book

Firstly before I read this book I checked out the Amazon reviews and there were a few negative reviews regarding Matts lifestyle and how lucky and privileged he is with his trips abroad, support network and loving girlfriend (now wife)  but for me this is the exact thing that makes this book so good and so relatable.It challenges the stigma of depression. 

Not everyone who suffers from depression does so as a result of PTSD or difficult or an abusive childhood or living in poverty and unemployment.  
People who from the outside can seem privileged or 'normal' can suffer from mental health problems too because it is an illness of the brain, a chemical imbalance not always because of social causes. 

My second point is that this book will not give you a happy ending. 
Because depression is lifelong. It will rear its ugly head from time to time. 
This book won't offer the reader reasons to stay alive and I think if Matt Haig had tried to do that it would have been patronising because reasons to live are personal to each human,  but what he does do is highlight that there are reasons to stay alive and if you hang in there you will find the strength to look to the future.

My one minor criticism of this book is that although Matt talks about things getting better and living again he doesn't provide much detail on whether he used talking therapies or CBT, he does make it clear that medication wasn't an option for him although doesn't deter his readers from exploring this option. He does highlight the importance of lifestyle choices such as running, meditation and reading. Perhaps he didn't seek professional help form therapists? its not clear. 

But what is clear from the conclusion of Reasons To Stay Alive is that although depression and anxiety are life-changing you can learn to understand and challenge those demons and take the control back.

You can have a future. 

Because I loved this book so much I am giving away three copies, just follow the Rafflecopter link, Giveaway ends 15th January at 11.59.

These giveaway prizes have been purchased independently and this giveaway is not affiliated with the Author


  • The closing date is 15th  January 2018 at 23.59 (GMT).
  • Open to UK residents aged 18 or over
  • Three winners  will receive a copy of Reasons to Stay Alive by Matt Haig
  • Entrants must log in via Rafflecopter 
  • Only one entry per Household
  • Winner will be randomly generated by Rafflecopter
  • All entries will be moderated.
  • The winner will be informed by email within 7 days of the closing date, and must respond within 7 days to claim their prize.
  • Winners name will be announced on Social media
  • This prize draw is governed by English law and the courts of England shall have exclusive jurisdiction over any dispute arising in connection with it

Tuesday, 19 December 2017

CAMHs- More hindrance than help

So K is back home.

I brought her home with the help of my sister last Thursday from Manchester she coped very well with the travel home. 

We have settled back into home life but yet again CAMHs are making my ability to cope very difficult. 
I know my decision to discharge K and bring her back to Somerset was against their advice and has probably increased their workload but to be honest I care about that as much as they care about sending peoples children hundreds of miles away to an inferior medical facility. 
When I discharged K from Cynet Bury they would only give us enough medication to last 4 days. I spoke to her care coordinator on Wednesday with my intention to discharge her that day so they were well aware she would need a new prescription, rang and spoke to her Pysch's medical secretary on Thursday afternoon to confirm what she needed and she promised to arrange a prescription to be put in the post Friday morning. 
Its now Tuesday, and no prescription. K is now on the 2nd day without Fluoxetine and Risperidone.

I've spent the morning on the phone and all I seem to meet is a shrugged shoulder attitude from the professionals. I've spoken to the CAMHs receptionist who relayed a conversation she had had with the medical secretary which pretty much stated that they posted it on Friday, they cant control the post and that as I couldn't personally collect it on Friday there wasn't anything further they can do. Spoke to NHS 111 who whilst were very friendly and helpful, cant arrange a prescription without speaking to the Psych it has to be down to a doctor, who yesterday told me they cant write a prescription without discharge notes and info from the psych either! 
Finally spoke to a manager at CAMHs who basically said he won't fax another prescription until tomorrow in case it turns up. He advised there won't be any negative withdrawal effects for at least 48 hours from the abrupt halt of the medication. i sincerley hope he is right about that. 

Why do they make it so hard for me to cope? If big boss man can fax a prescription tomorrow then why couldn't they have done that on Friday? Why not today? 

If I'm being irrational (which at the moment I mostly am) i feel this is CAMHs reaction to me discharging her from Hospital against their advice, a punishment. I guess they think why should they bend over backwards to sort out a prescription when she should be in Manchester. 

What they don't realise is the pressure and stress this puts me under as her carer. 
I can control most things, but I do not have the ability to access her medicines without their help.

One of the things that have been highlighted to me by family and by Professionals in the last month has been how unassertive I am. How I don't feel able to make demands for what I need, I've always been a bit of a doormat- a product of my childhood unfortunately but I don't think this only applies to my children but to my relationship with Ks mental health team too.

Since she has come home I have coped very well. In fact, the only time I have felt overwhelmed, anxious or out of control has in fact been with the stress of the missing prescription. and with my dealing with the CAMHs professionals. I have managed her moods very well. 

In my current struggling state of mind, i feel like I don't want to engage with these services anymore and that through their failing all they actually do is make my situation to cope with Ks mental health (and protect my own) harder.

Wish i could sign off this post abit more positively! 

Thursday, 7 December 2017

Trying to get my daughter home for Christmas- Just Giving Page

So K has been away from home for three weeks now.

I've been up to Manchester to see her three times and now Christmas is looming.
I'm still struggling financially and emotionally.
I have managed to agree a 4-day return to home for Christmas with her doctor and am now faced with the monumentus financial and logistical challenge of getting her home for Christmas. 

As the trip takes 5 hours each way and can be quite stressful with train changes, using the tram and finding taxis I am at the moment considering the best way to do this whilst avoiding as much stress and anxiety to her. 

The very nature of her illness means that she really struggles with crowds. 
Her current mental state means that she is very aware of security cameras and people watching her so I am trying to find a way to transport her home as gently as possible. 
Anyone who has ever been to Manchester Picadilly train station will know that it is a huge station with hundreds of people making journeys. 
I think the best way to get her home would be to travel mid-morning so that we avoid the commuters and the station and the trains will be a bit quieter.
The problem with this is that it is impossible to do this in one day so I need to stay in Manchester overnight and bring her home the next morning.

I've done some calculations this morning and the whole journey- bringing her home on Friday the 22nd and then taking her back on the 27th will cost in all £360. 

This is the room overnight and train travel for the two of us and doesn't take into account any taxi's, food and drink or any other expenses.

I'm still accumulating my train tickets for the journeys I've taken so far, the carer Assessment advisor has found a charity that has a grant I can apply for up to £500, and I've borrowed money from my sister to visit yesterday I'm yet to have enough tickets to submit my application for help and I have bills that have gone unpaid this month to enable me to visit her. So I'm in a position of if and when this grant is paid do I use this money to pay my outstanding bills or do I use this money to bring her home for Christmas?

I feel completely hopeless at the moment
I haven't bought any Christmas gifts for the people that I love because there is no money.

So in desperation, I have set up a Just Giving page. I really didn't want to do this because firstly, it's embarrassing having to ask complete strangers for help, secondly because I've always provided everything that my children need and thirdly because I want to protect Ks identity in the community where we live. 
But with two and a half weeks to Christmas, I'm getting desperate, I cannot do Christmas without my child, this isn't even an option. 

You can donate here on my Just Giving Page. Any support would be much appreciated. 

You can read about Ks admission to a hospital 225 miles away here

Thursday, 30 November 2017

My daughter is 225 miles away and there is nothing i can do

I haven't blogged in a while because we have had so much going on I've been struggling to find the time and the energy to share our latest ordeal.

So K is now 225 miles away from me in Manchester.

On Thursday 9th November K took a massive overdose whilst at College. 
She was admitted to the Children's Ward of the local hospital where she was treated with a drip for the paracetamol overdose.

Naturally, I was devastated and angry. How the hell she had managed to accumulate 80 Paracetamol without me knowing I still don't really know but what was clear to me was that I wasn't doing enough to protect her at home.
I had been struggling to cope with my caring role for a while, K's mental health has been declining since starting college in September, her self-harming had become much worse and she started to experience paranoia and was hearing voices.
We had had a trip to hospital 10 days before the suicide attempt for a self-harm wound that she couldn't stop the bleeding at 2.30 in the morning via ambulance where the staff also diagnosed an infection in another wound so I was feeling frazzled and overwhelmed and felt like I was failing at keeping her safe. My own mental health was declining.

When the CAMHs assessment person came to see us in the ward on Monday morning I told them that I couldn't cope and that I felt her condition was becoming unmanageable at home. That was probably the hardest thing I have ever had to go in my 20 years of being a mum. Its heartbreaking to admit that you cannot look after your own child. 

So CAMHs started the process of finding her a bed in a psychiatric Adolescent Unit and we remained on the children's ward as they felt the risk of another suicide attempt was too big to risk allowing her to come home. 
Being the Children's ward with someone suffering from Mental Health problems was horrendous! I will write about this in a separate post as this experience warrants its own blog post!

I am not naive, I know the pressure the NHS service is under and I'm more than aware that mental health provisions are very low on the list of Theresa Mays spending priorities but nothing could prepare us of the heartache to come. 

On day seven, K was really struggling on the Children's Ward so even though the dread of knowing that we would soon be separated for the first time in our mother-daughter relationship was there I was also desperate for any news that would mean she could start getting the help she needed and I could return home to my other responsibilities, even for the day. 
CAMHs had already warned me that the provision may not be close to home but nothing could prepare me for the call from a doctor in Manchester.

I want to say it was a heartbreaking decision but actually, it wasn't even a decision.
We had no choice, I was very aware that staying on the children's ward to wait for a closer bed wasn't possible, returning home wasn't possible, going private wasn't possible.
There was no choice. 


So my daughter is 220 miles away in Bury, Manchester.

She was taken there by two lovely people arranged by hospital transport, the policy stated that I was not allowed to travel with her so I had to say my goodbyes in the hospital car park and watch my whole world disappear across the country.

It will be two weeks tomorrow since she has been admitted. She is staying in a Cygnet Hospital, on an acute adolescents ward and is ok, they have changed her medication, and are treating her with antipsychotics as well as offering one to one and group therapy.

I have been able to visit twice so far. I don't drive so have had to use public transport. 
It costs £110 to visit and takes me five and a half hours each way, it is an exhausting day and very overwhelming for a small-town girl like me to negotiate the sheer size and hustle bustle that is Manchester on my own but its manageable and worth it to spend a few hours with her and meet the people who have taken over the responsibility for her well-being.

The most shocking thing for me throughout this whole experience has been the complete disempowerment I have experienced as a mother and a carer.
It almost feels like K being sent to Manchester, completely isolated from her family is my punishment for saying actually I cant cope with this anymore. 

Being so far away from my own daughter means that I feel completely cut off from her and her progress, the distance makes it very difficult to establish a relationship with the team looking after her and the financial pressure is crippling my household.

I gave up my job in September 2016 after Ks second suicide attempt as I felt if I didn't I would lose her, so I became her full-time carer. since then we have been on Universal Credit and claimed DLA which supplemented my income. Recently when K became 16 she was transferred from DLA to PIP (this also requires a blog post of its own- watch this space!) and within this process her money awarded was reduced by £90 a month so we were already struggling financially. I have appealed this and am waiting for a response.

I find it absolutely shocking that although I have no choice or input into where she is being treated, neither CAMHs or Children's Social Care are able to offer any financial support to enable me to visit her. This means that after two visits totalling £220, my meagre savings are gone, I am overdrawn and have direct debits bouncing about all over the place and am now accruing bank charges.

I am yet to find money to visit her next week and have today had to apply to a charity to see if I can get some help. I fear that I am going to get into debt but I need to see her and I don't feel that once a week to see your own child whilst in a mental health crisis is expecting too much.

At the moment I just feel very angry.

I've been told by the professionals that were involved in her care here that I should take this time to rest and recharge my batteries and to think about how I want things to be when she comes home. 

My response to that is this-

How can a person rest when they are constantly ravaged by worry, guilt and uncertainty.
Constant anxiety of being so far away if K should need me, the inability to establish any relationship with the team looking after her due to distance and the constant dread of getting into debt. 
There is no rest from this.

Check out my Just Giving page to bring her home for Christmas Here