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






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