Care in the community

There’s going to be row …. All is not well with my family. Let me explain. My lovely father came over this afternoon and he is helping me with loads of things. Like making my bed (I cannot do it alone, I can’t reach the corners on crutches) and taking out the rubbish down 2 flights of stairs. I am so grateful for his help; that is not the problem. I rang mum to say he was on his way home and it transpires that she gave him some money for me, which he forgot to give me. With things so tense in the family already, my father is not a happy man. So a row from mum is likely to make things very difficult. Silly small rows like this often blow up big time at the moment. I feel awful as it is all my fault. I am having a real financial crisis. I spent too much whilst away at the unit and now things are very tight. Mum and Dad are paying off my credit cards and I feel so stupid. Thus the extra money Mum wanted to give to me was so important to her. I am so sick of everything right now. Money makes such a difference to everyone but for me buying things is like buying happiness. I know lots of people do the same and it is not out of control or anything but I just don’t have anything to spare for non-essentials. I keep buying books in order to read more about borderline and self harm, in an effort to feel better. There are lots of self help style books out there. Yet I do know the answers, stick in therapy, get coping skills blah blah … So why do I still think buying stuff is the answer? Who knows!!!

Other than that things are very mixed. I am having a lot of mood swings. In minutes I can be laughing, then furious then ok … It is quite confusing and unpredictable. I know this bouncing around of emotions is very hard to be around and so interacting with others is tricky, on a good day I have lots to say, can be very funny and ok, another day, it is all no good and too much, which makes me impossible to be around. So I am not making too many plans to see anyone. Its easier if I just stay inside on my own. I am keeping all my appointments and stuff like that, which is a step forward compared to this time last year where I couldn’t even get out of bed. I am keeping clean and tidy around the flat, all good. I just wish I was happier. What is it that other people do to be happy? When was I last really happy? I am not sure how to answer that. I was never particularly happy in the unit yet I am idolising it now because I am so lonely (out of choice really, my fault, as I can’t face being with people).

I wish I could snap out of this maudlin self-pity. I can’t wait to get back to uni. Hopefully the course notes will arrive soon and I can get a head start before Christmas. I have decided to do one history module – Victorian attitudes to religion and gender, 2 theology modules – world religions and Old Testament theology, and a module from social studies – sexualities. Should keep me out of mischief for a while! I am looking forward to using my brain again and being around other students.

I did go on the protest march about shutting our local hospital. It was huge. Keith Richards even went. I hope it makes a difference. I have been to A&E over 180 times in the last 3 years or so. Such a time waster, I self harm and then expect them to pick up the pieces. I do feel very guilty about it so by marching etc I hope that I am redressing the balance and giving something back. No one will know the decision of the PCT for ages.

So it is not all bad, I am just being a drama queen! (No change there then …)

After much stupidity last week, I have obviously had a visit or 2 to A&E to try and get my head around things. I am glad that my psychologist is back from her leave and I had so much to say to her at my appointment that I appeared a bit hyper – my words came ‘vomiting’ out in a splurge and she had to slow me down! I think this is because I have few people to actually speak to each day. Last weekend, I spent over 36 hours without talking to anyone – no phone calls, no going out …. Nothing.
This week though, I did manage to get my arse out of bed and go to Manchester for the day to see people. It was a good day. I loved all the travel and it was a real challenge – over 10 hours on a train, lots of connections to get etc. Simple stuff for most people but really hard when you are on crutches, it takes military planning! I loved seeing my friends and it was the first time I’d met most of them as they were people I post to on the internet. We all have ‘issues’ and met on a group page about self harm. They had all overcome their anxieties and made it to Manchester, and it was a so nice to meet people I had received so much help and support from. I also saw one of my best friends from uni, B. She now lives in Manc and I miss her a lot. I had a nice couple of hours with her and her little girl. Life changes so much for people and I must admit I feel like I must make some changes too. It does feel like I am letting things slip by sometimes.

I have been a bit spun out by something my psychologist said when I saw her. We were looking at what to cover in our sessions. She said I was chaotic and until the chaos calms down, we cannot go back to the difficult issues that still hurt me. She called them ‘abuse’ and said I was ‘traumatised’. I am scared by this. I have always known I had past problems that come back to me in the form of flashbacks, and that part of why I self harm is down to what happened, but I never thought of them as abuse. I feel quite shocked to hear them described so seriously. It has made me think a bit differently and face up to the fact I have such issues in my past. I have been looking on the net for hours to find resources and help but my psychologist was very clear that I was not ready to talk about them specifically – I needed to develop other coping mechanisms so that after such sessions I remain safe. So we are going to work on skills training for the time being. I am both relieved and frustrated by everything taking so long. I do not want to talk but I do want the flashbacks to go away and I don’t know any other way of dealing with them other than talking. I do trust her though, she is usually right about this sort of thing.

Thus I am left feeling very unstable – not too bad but changeable. One minute, I am very tired and go to bed, other times I can face the world and get on with things. I hate that I still self harm – I had aimed to not need hospital treatment following my stay at the unit. But when I get really out of control, it is still the one way to restore calm and gain some release. I have currently over 20 stitches. No one really knows how much I harm as I have no one to confide in. My psychologist says that if I tell her, she thinks I do so just to worry her. That is not what they said at the unit. They took the attitude that saying and sharing the burden can remove the need to communicate via cutting. Having people know is enough. I miss the unit so much. I often look at my watch and think what I’d be doing now if I was still there. I think of the staff and the other residents and wish I had not wasted so much of it being angry or pathetic. Until I get back to uni, I am not sure what to do with myself. Time just feels endless and lonely.

I have had a positive week really, but it feels pants. Too much self-pity and introspection I think.

Tomorrow is another march to save our local A&E from closure. Ironically, I have been there over 180 times and need it more than most but I am not sure whether it is really appropriate for me to go. I do, after all, have a choice about going – I cause the harm which needs treatment. But I think that the government cannot get away with running down the NHS resources this way. They say it is better for people to go to big hospitals and get specialist help. Obviously they have never been to a big hospital – my time in ‘national centres of excellence’ has proved that big hospitals do not have time to care. Yes, they may have the most specialist services but the nursing care, waiting times, conditions of the wards and infections rates are appalling. Local hospitals are much better and if they cannot treat you, at least you get transferred to somewhere that can help in a better state than after long ambulance journeys (I get very ambulance sick – a transfer from Chichester to Brighton was enough to make me projectile vomit!) So I am going to try and attend, it’s the least I can do to say thank you and I’m sorry.

So, it has been three weeks since I left the unit. I have settled back in to some sort of normality, prescriptions, household tasks and various episodes of very bad borderline behaviour. Things are different than before, I am trying a lot harder not to self harm and have managed to avoid A&E a bit more, I have started to go out and see people and I have tidied up somewhat (ie. Have found the sofa – and a stack of bills!!)

I feel a bit more in touch with my friends but I am still stuck for words when it comes to describing where I have been. It’s like coming out in some ways – I tell people my progress and in doing so, they find out how bad things were. A lot of people don’t realise about my depression and self harm and so saying about therapy has led to some difficult discussions but I feel a sense of relief, overall. Like people know me more and can appreciate where I am coming from, I think.

I am so uncertain about my future and now I realise that lying doesn’t help. If I just say part of the truth, that I will return to uni and that will have to do for now, often I am surprised by people’s responses, they too have little sense of the long term. My mate C has a new man, I am pleased for her and hope she has found a nice one. She makes me see that you can have everything I think I want, like a job, mortgage and family but if you are unhappy about being single or without a child, then it is as if you have nothing. I wish I had more interesting things to say and usually resort to the news or TV storylines to have a conversation. I do still feel a long way off a good friend to my friends. I have forgotten their birthdays and lost track of their lives whilst I lived in the CRU bubble. I did so because I was focusing on myself but also I could not bear the gap between their lives and the state of mine. I am so very selfish at times but I had to make the most of the CRU. My friends do not seem to mind though.

My parents have waded into my flat and helped me enormously. They patiently sorted, tidied, fetched and carried last Saturday and will do so again tomorrow in the hope of getting me sorted. I am so grateful to them. I really feel closer to them now. I had to tell them of my financial situation but they are helping me to budget etc. At the CRU group, I was told off by the staff for running to my parents and ‘running them into early graves’. I can see their point but right now, I am at the stage where I could give up all together and just having someone care about me and my life, is enough to get me out of bed and doing stuff. I am using my parents too much but they want to do something, anything to help me get on with my life. I will try, again to keep going once the flat is more manageable. It’s a fine line between learned helplessness and true need. I am not sure where I am with that.

My psychologist has been away and I look forward to her return and some therapeutic input. I have been back to the outpatient group twice but each time I came away and ended up in A&E. It hurts so much to be back there and not part of it. I am not going again for a while. CPN from hell has been really nice. I am shocked! But she helped me sort out my kitchen – rolling up her sleeves to do the washing up and stuff. I am used to her being just a judgemental pain in the arse – I totally see her differently now. A very nice surprise. But, one of my more borderline days happened to be when I saw my consultant and told him to ‘leave me alone’ adding ‘you patronizing bastard’, and stormed out. Not big or clever. I have yet to apologise. I was very cross with myself but I just lost it.
So I have plenty of help from lots of nice people in the mental health world, good friends and parents. But I still feel very empty, like it is all for show and not how I really want life to be. I sit alone a lot, usually in bed watching TV or reading. I am miserable and self pitying but I don’t know what else to do. I have offered my voluntary services to the church and the vicar says he’ll find me something to do, and I hope to slowly get more active. It’s just hard. Baby steps take a lot of motivation and that is something I am struggling with, but not giving up on, for now.

I have been officially discharged from the CRU and have returned to my flat. I have been home a week now and cannot face unpacking so the flat is like Basra on a bad day – stuff everywhere – I have even lost the sofa! I am overwhelmed with the task because the flat was a tip even before I came home and there is just too much crap in all the storage spaces so I have to sort them out before I can even begin unpacking. But the truth is perhaps what lies behind my inability to unpack – at the unit we were continually asked to look at our behaviour and work out what is really motivating us. And in this case, I just cannot face the finality of leaving the unit. I cannot accept that I have left and I do not want to be at home. The unit and all that I have achieved whilst being there feels so present and I actually ache because I am missing them. Ironic really since I had so much trouble staying there. Every Sunday was a trial to make myself go back and now, Sunday afternoons are unbearable in the fact that I am stuck here for another 7 days with no respite.
My leaving was both touching and sad but the staff and current residents were very kind and thoughtful in how they helped me to review the admission and realise all that I have achieved but also saying goodbye without falling apart. I spent so much time in tears in the last week. But I also found myself furious – I was not ready to leave, I have nothing in the community. I wanted them to make me better and I was so disappointed that it was the end but the strong feelings and problems I arrived with, have not abated at all. It was a very tiring and emotional week. Unsurprising that this week I have bounced from appointment to appointment, trying not to think about it all.

Today it all hit me – a whole week without the CRU. I cried for ages and I felt so awful, I had to self harm for the first time since I’ve been back. I am now gathering up the courage to go back to A&E. I feel that I have let everyone down and if my parents knew, they’d be crushed. All that money (£66,000) and I still have to self harm in order to cope. I want to be back there. It felt so caring and safe – even though at the time, it felt nothing like that. I now sit here at home and have no one. Out of hours care is an ‘unmet need’ according to the discharge form and there is nothing anyone can do to change this. Yes, there are helplines and such but basically, you are on your own. The head of the unit, Jane, admitted that I would have a very tough time in the next three months, adjusting to life back here again. I do have the opportunity to return for one group a week on Tuesdays, called the CRU group. You go for 3 months, each Tuesday, and have 45mins back in the unit to talk. But that is divided between up to 3 returning residents. So I travel for 3 hours and get 15 mins. Marvellous. I couldn’t face going last Tuesday but I have to go this Tuesday because I have travel forms and money to claim plus my home team needs some of the paperwork like care plans and copies of letters etc. I do want to see everyone again. I miss my fellow residents and I want to see how they are getting on but I am scared to see the staff again, because I have screwed up so badly. And there is a real chance that in leaving the unit to come back here, whilst the inpatients go to art group, it might just make things feel even worse. I do not want to see S in charge as senior resident. I don’t want to hear what I have missed and I don’t want to see the staff, feel their care but not be able to get any time with them. It hurts so much; I just go from task to task until I sleep each day. I feel very empty. I cannot face seeing my friends again and I am sick of telling people how I am doing fine, I am much better and all that crap.

I have a photo from the unit that I will try to upload to my blog. I look at it and remember that day, and realise that I had every chance to change but I wouldn’t or couldn’t let them in enough.

I pin my hopes on getting some voluntary job so that I have a purpose again – it is only in helping others that I feel any better about myself. I do have psychology sessions as well so I have to keep at it, tidy my flat and try again and again.

I now face the joy of waiting ages in A&E on a Sunday. My own fault, I know but I wish I could stitch myself.
Sorry to moan and whinge but that is how I am at the moment.

There has to be more to life than this ...