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#im honestly concerned it might start a relapse but at the same time i am still eating so maybe not
letsdiscoverkitty · 5 years
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CPA update (30th August 2019)
I did not plan to write this this evening but I needed to get this out somewhere.
I know I haven’t been very present online and I can only apologise for that but as you can imagine things have been quite challenging since being admitted. I had my first CPA so I thought I would make a little post to help me begin to process it/get some thoughts down....(warning: very long post ahead, snacks may be necessary, and I am sorry if it does not read well/make much sense, I literally just typed my heart out)
For those who are not sure of what one is, a CPA is basically a care plan review where your treatment team review the past few weeks/months (time since the last review) and then start to plan the next stages of your care. It is a chance for different members of your treatment to meet and make sure that everyone is on the same page. Today my CPA consisted of my consultant, one of the nursing staff from the ward, the OP ED nurse I was seeing before I came in, myself and my parents. The first half of the review was just between professionals, I was then called into the room for a discussion followed by my parents nearer the end.
It is hard to remember what I have shared online so I am sorry if some of the things I mention do not make sense but I will try to cover most of what happened. I had my ward round on Thursday (due to the bank holiday weekend just gone), in which a lot of new ideas were brought to the table as, well, no one really knows what to do with me… A week or so ago I wrote a letter to my consultant as I was beginning to worry about what the plan was for when I was discharged (as it was being implied that I was to be discharged over the next few weeks)/that my community team were not replying to any messages and that I was concerned about going back home to live at my parents house.
My main worries with returning home were mainly because it is a place where I have been unwell for many years and I find that when I go back there it is almost like anorexia snaps back without me realising it/I can’t control it. Sadly due to being unwell at home for years, I do associate home with bad things, I also do not currently have no goals or things to be working towards (i.e. I have no education to go back to, no job lined up or thought about to go back to) and the worry is that I would be going back home to just anorexia and relapsing backwards. Throw into the mix that my mum retired last week, as well as the family dynamics always being quite rocky (along with being geographically being incredibly socially isolated), I think it is fair to say that I was extremely worried about the prospect of home leave let alone moving back home permanently and with very limited outpatient support.
A long story short, my consultant agrees that going back home is likely not going to help me move on/recover/give me a chance of living a life beyond this, however she also does not believe that staying in an acute EDU will help (which I do understand). In terms of why she thinks that being on the unit for longer might not help include that my weight has not been reaching the targets that are expected, I am struggling on leave/when I get given more control, as well as the usual pitfalls of being on an EDU like being trapped around a lot of other acutely unwell people, having the identity reinforced and the lack of responsibility/it not necessarily coming from me. I floated the idea of going to live in Reading with Andi however she shot me down straight away at that stage saying that I was far too unwell for that…
Anyway, to get to the point, she wants to apply for funding for me to go into residential treatment. This is not something that I know much about, although I do know that getting funding for a place is very very hard and that there are very few places that offer it in the country….from what she explained to me it is a more holistic approach, with the focus on helping you build a life beyond anorexia whilst also supporting you nutritionally. (it sounds far too fairytale-esque for my liking…)She said that as I have had a lot of psychological input and have been under services with very few gaps over the years, that it was obvious that a new approach was needed and that this style might be that. Apparently I have incredible insight/understanding however because the anorexic neural pathways/cognitions have become so strong and rigid, I find it near impossible to force myself to follow through with the theory that I know so well.
I honestly have no idea how I feel right now. I am utterly lost and confused and don’t really know what to do with myself. I feel like no one knows what to do with me/what will help and they are just trying to get rid of me. I want to recover, I really do.  My consultant said that it is not that I don’t want to or don’t have motivation, but that it is the degree of severity of the illness and the complexity of my case, which kind of helped but also left me feeling very broken and hopeless.
She tried to explain all of this to my parents today and I am actually relieved that she was able to speak to them about it as there is no way that I would have been able to approach the subject. She explained it in scientific terms and tried to be realistic about the whole process (which could likely take months to apply for funding, let alone get on the waiting list/pass assessments).
My OP team are apparently supportive of this and are going to work together with the IP team, my consultant and the therapist I was seeing as an OP to put together a proposal for the CCG. Sadly, as I have mentioned this is going to be quite a lengthy process and I don’t really know where it leaves me…If this were not being explored then I would be getting discharged to the same very minimal support that I have had over the past x years, which has not been enough in the past.
So what now? Good question. Basically I have been told that I have to “prove” to the CCG that I am not just in need of an acute EDU admission and that the funding would not be going to waste…this means that I have to show that I can maintain my weight in the community (or gain if possible) as if I were to relapse they would likely just say that I need an acute admission and refuse the funding, leaving me back at square one.
This admission was never going to be a long one, I knew that, but part of me was hoping for a bit longer…I suppose it has brought to the surface the necessity for a different approach to be explored, which I hope means something. Basically my admission can’t be extended, that has been made clear, and I now have a discharge date for two weeks time…with little to no idea of time length beyond that in regards to this talk of residential.
I honestly don’t know what to think or how to feel right now, I really don’t. Part of me thinks that they are making a big fuss over nothing and that there is no way that I will get funding as there are so many people out there with far worse scenarios than mine who need it more. At least I have a home to go to, I know there are many people who dont, so I should really just suck it up and try and do what I can at home with the support that I have.
I have no idea what the residential would entail practically but I am worried that it could end up feeding into my eating disorder even more? I know the reason for the admission would be to help me build a life beyond anorexia, but surely being stuck in a place like that almost reinforces that identity? I dont know, I am very confused about everything right now :(
Short term plan: I have an appointment set up with the ED nurse I am to see in the community for Monday morning and have been given a bit of extra leave this weekend to make it possible for me to attend. When I return to the ward on Monday afternoon I will be moving onto transition and have been promised that I will have a number of appointments with the dietitian over my last two weeks in order to create a realistic maintenance plan for when I go home (as well as trying to get my mum to attend an appointment with the two of us). I am also trying to get an appointment for my mum to come to a family therapy session (they have pretty much written off my dad as someone who can be supportive for a number of reasons which I do not want to go into right now) Being on transition hopefully will give me a bit of an opportunity to self-cater some meals and practice before I move back home for the foreseeable future.
It all feels very rushed and uncertain and I was not expecting to get this much leave this weekend so don’t really know what to do with myself but yeah I suppose this is where things are at. The ward has been quite a tricky environment so on the one hand I am glad to have some space, however Im also worried about it too.
I am sorry, I realise that this whole post probably comes across as extremely selfish and stupid - I wish I could shake myself/pull myself together and just do what I know I need to do but whywhywhy do I keep ending up back in the same place time and time again? I have tried so bloody hard over the past x years but it has never been enough….I do not want to end up being sent to a unit where I will spend months/my consultant briefly mentioned that admissions are usually between 1 and 2 years long…I really dont. but I dont know what else to do with myself when so many options have been explored. I am tired of it all, of everything. It is like I dont know where to turn anymore. Part of me feels like I am just getting palmed off from place to the next because no body knows what to do with me. sigh. I am sorry for throwing this pity party. I wish I had some more positive news to share with you all. I suppose yes I have made some progress since I was admitted. I have gained weight. I am no longer in as much danger as I was. I have had to face a lot of changes in terms of routines, eating different foods, times, I can think a little clearer, I have more concentration etc. Things are just very hard at the moment and having everything in terms of my treatment thrown up in the air like this has made me feel even more unsettled and uncertain about everything. I have no idea what the next few weeks/months may hold so for now I am going to have to continue to take each day as it comes and see where it takes me. Sorry again for the ridiculous  length of this post, you genuinely deserve a gold medal if you have stuck with me through this.
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hannahvsana · 6 years
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An unnecessarily long post of self reflection which was meant to be a short update but got deep
It's one of those days where I just feel shitty. I think getting my period has triggered it, not only the hormonal part but mentally- I've never openly talked about it before but getting my period always makes me feel like I'm "not good enough" from an ED perspective. The voice in my head tells me I'm doing something wrong, but that's crazy right? I'm doing something wrong because my body is still functioning? I wonder if many people feel the same way. It is 3 weeks late which is concerning, but at least it means my bones are okay.
I'm also struggling a lot with food at the moment, I was before anyway, but I'm becoming really fearful again of any food, I'm at the point again where nothing is safe. I felt this way this time last year; food became numbers, numbers became less and less, until no number is good enough, it's all too much. The last few days I've spent in my room because I'm terrified of being in the kitchen alone at the thought that I might "lose control." I can't stand having food in front of me that I might pick at (other than actual meals), so I have to move it otherwise I get really stressed out. The other night I went out and I couldn't explain exactly what I was feeling (I think EUPD kicked in a bit then too), but in hindsight the fact that I was thinking about food and considering ordering some made me feel so disgusted with myself. Yet everything I think about comes back to food. My entire day surrounds when I'm going to have to eat, even now I'm thinking about the soup I have in the fridge which would be the only option that'd not cause significant awful thoughts at dinner. If I'm out with friends I think about when they might eat, and whether or not I can allow myself to have some of theirs, getting honestly so giddy and excited about the thought of having something "forbidden", only to be hit by a feeling of guilt and disgust for considering it. I get so excited when Sam says they want to order something because it gives me something to think about and almost obsess over, and sometimes I have a hint of freedom and have some, but when I'm in bed trying to sleep I think about it more and how I was "weak"
In bed, I think bad things about myself and it's my thoughts (not hearing voices or anything like that) but there's so many thoughts over lapping each eachother. It's so confusing when I'm trying to explain what my mind is saying because it's literally a cacophony of words. It's as if there's people in my head but they're all me, just different versions and they're all really mean. And the weirdest part is, it's all in third person. "You messed up" "you aren't good enough", and the other night, which I don't think was food related, was "you are unnecessary" on repeat. I don't know what that one means, but that word was going round and round my head until I fell asleep.
Sometimes I feel so excessive, not in a dramatic way as such, but just like I'm too much. I say too much, I do too much, I'm scared I say things that others may perceive me as being dramatic. I'm scared that I talk too much about myself, in general and about my mind, especially when it comes to my moods because I haven't yet found the right words to explain them and I feel stupid because what I feel isn't always on surface level so it seems like I'm making things up. Am I making things up? I feel like a really bad person sometimes. I do really want to shrink into a little ball, be quiet and docile, keep things too myself. If I did that then surely I couldn't be too much?
I rely a lot on what other people think of me, so the last point is very important. If something thinks I'm dramatic, overly invested in myself etc, then surely it had to be true because I don't have a real perception of who I am or what I'm like. On a base level I think I'm decent, my honest lack of self awareness or self worth allows me to invest in others and I honestly enjoy doing so, I feel genuine happiness when something I do makes someone happy. Not in a 'martyr' way, I don't place myself on any pedestal at all, but when people around me are happy or even just smile, it makes me happy because I have so much love for my friends and family that their happiness makes me feel happy. And sometimes I feel like my worth is based on how I make others feel. Thinking about that, one of my biggest worries is that I make people close to me feel bad, that I might do something that hurts them and a bigger worry is not knowing I've done so. If I were to do that, and sometimes I think I do, I feel worthless and that I'd be better off leaving or again, shrinking into nothingness so I can't do it again.
I also think my sense of self may be warped because every time I've had a bump in the road or very big dip in recovery, it's as if I become a new person. When I first got ill i strived to be, and became, more socialable, likeable, clever, etc. I enjoyed that, it was a new me and I worried about losing that if I stopped my 'thing' and that I'd lose everyone along side myself. So when I relapsed the first time I guess I almost want the new me back, but a levels were harder than GCSE, so I went the extra mile to try harder to become the "better me". Then when I went too far and was sent to stay with my cousin, I discovered that I could change again, maybe discover a newer new me if I became fit and healthy, maybe then I'd be likeable and clever and maybe care about myself. And for those two weeks I did, my mum said she didn't recognise the girl she sent away 2 weeks prior. In family therapy both parents remarked on their "new Han" (actual words). But when my psychiatrist stopped me and put me under home monitoring, the new me was stumped out before I had a chance to properly reinvent myself for the 3rd time. That was when I became properly suicidal and didn't care for the outcome, I didn't see any means of another reinvention. Which leads me on to this year- what went wrong? Why had this happened again. I know the initial trigger was seeing my weight in April, and it being my highest ever. But every other time I've gotten bad, there's always been a deeper reason. I don't feel new, I just feel like a nuisance, another issue my family and friends have to cope with for the 4th time in 4 years. Unnecessary. Perhaps it was because I wanted to be like 14 year old me, successful in my studies and likeable. I lost most of my friends last year, not necesarily close friends just those who spoke to me once but stopped, and even my best friend who I honestly loved. Why did they go? What did I do? Maybe that was part of the cause of this mess? Reading my diary from the start of this year I talk a lot about losing people I love so I guess so. But at least I'm planning my hopefully last and best ever and healthiest ever reinvention at uni. I don't want to do this again. I didn't mean to let myself get to this point but I'm scared of losing everything if it happens again. I'll do everything to stop this happening again.
I don't think I'm in a very good place right now. Another thought I've been having is along the lines of that my body is a canvas, I've always used it as a means of showing how I feel- ever since I was little I was expressive with my body language and tone of voice, to discovering self harm at age 13-14 as a means of seeing the bad things I felt on my skin for myself, up to trying to make myself "new" when my disorder took hold. But I've never been good with words. I can write, so if I have something important to say I'll write it, but in person I'm not good at talking, especially if it's on the spot advice. At this period of time, my mind is frustrated because I've been trying to use my words to say that I don't feel good, I don't want anyone to help as such, I just want to talk about it sometimes. But my body-canvas doesn't show that I feel poorly, I don't think I look how I feel; I feel as if my words are redundant. I'm trying not to mark my skin with lines for every bad thought I have in the moment, though it's getting harder to resist because my canvas isn't presenting the bad things im feeling and doing. Going back to where I started, getting my period today almost topped that feeling off. Inside I hurt, my body hurts, it's getting hard to climb up stairs without feeling a little dizzy at the top, standing up often makes me go blind for 5 seconds and my legs are bruising. But my body is showing physical signs that I'm fine. It has a cycle, I have the curves I've been cursed with had since I was 10 years old, I can smile.
I know this isn't recovery, not even a half-recovery, but despite this can it be called a relapse if I still care about the end outcome? I disregard this body as something to care for, for me it's a means of expression, that much is true, but I still want to start university next month and start my 4-5th and final recovery. I want to reinvent my body, make it grow strong and physical well, to show the start of my new life. An expression of 'the new me'. Maybe when that happens I'll begin to reclaim the body I'm in. I don't know where I'm going with this, I'm just writing how I feel. This is cathartic, many of the things I'm writing about are things I've never said or even written, or coherently thought about.
This post includes so many words I wish I could say out loud and finally I've been able to write it down. Nothing will come of it and I highly doubt anyone will read this all, it's unimportant, but for me my head is a bit quieter. Often, I sit in silence trying to put words in my mind together like a jigsaw puzzle. Unecessary. Periods. Dizzy. Scared. Excited. Unecessary. New. Shrinking. Unecessary. Canvas. Unwell. So yeah, this is a compilation, not a coherent one, of the things I've been thinking recently and that have been hurting me. Again there's nothing that can be done about it all, but it feels good to finish one jigsaw
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