2018

I have set up some volunteering. I am a Social Media intern for an organisation that tackles body image issues; currently I am running their FaceBook page. On the 28th of December I will be a volunteer Media Relations Manager for a self-injury charity which is a larger role and with a lot of work, could turn into something really good. I feel really committed to this one and building on my skills. And then once I have had my training on January 29th I will be volunteering with the NHS communications team based at a Child and Adolescent Mental health team.

However, I have seen two perfect jobs. One is part-time, but I am not sure taking it would work out. It would leave me with less money than I currently have and it might have an effect on my other volunteering and I do not want that to happen. It would also stop me from being able to return to therapy.

And to be honest, I really want to return to therapy. I am just scared of how long that process is going to take and of being continuously rejected. And it would be kind of hard to swap mental health teams.

The therapy would be 3-4 days per week, usually 3. And not all day. So my current roles would work with the volunteering. Taking on a job would not be.

I want to be happy with the idea of volunteering and building up my CV while doing therapy. But it is hard not to want to just sack therapy off and get a job because I’m 25 and the pressure to be further into life than I am feels huge.

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Christmas and Mental Illness: Borderline Personality Disorder

 

It seems obvious that I write about this. I have wrote about Christmas in relation to my experiences of Anorexia, and surrounding the family side of the festive period, so it only makes sense to write about what is my main current diagnosis; yet this post is not coming very naturally.

The thing with having Borderline Personality Disorder (BPD) is that I can only prepare and preempt things to an extent. Really, I have no idea. I have no idea what mood I will be in that day because I can never predict that, although it is likely to be very up and down, and mixed up.

I have no idea what kind of thoughts I will battle with the most; Will it be self-destructive thoughts? Will it be past memories? Will it be anxious thoughts about the day(s) ahead? Will it be paranoid-like thoughts? Will I be able to put certain things into a box for the day and ignore them? Or will they, at times, knock me to the ground?

What physical state will I be in? Will I have been sleeping well, or not? Will I be over sleeping? Will I wake up drained? Will I be agitated? Or so anxious that I cannot sit still and before long my body becomes exhausted? Will my brain be going at a million miles per hour but my body lagging behind? Will I feel bad for sitting around all day? Will I need to take PRN medication that will make everything calmer, and yet feel fuzzy? Will I need to go out for a walk to get some space? Will I manage the food side as good as I expect? If I do have some ‘freak outs’ will I be able to manage them?

Will someone say something that triggers me off? Will I misinterpret something? Will I think someone is making a negative comment when they are not? Will someone say something that reminds me of something I cannot manage to think about? Will I think everything people say is a hidden version of ‘I do not like you’, or, ‘you are not good enough’, or perhaps even, ‘you are too much’?

And how will everyone else be? Will my sister be struggling badly? Will my Mum make comments about my Dad and his family? Will I cope seeing my Dad and his wife for the first time in two years? Will it be awkward? Should I ring my Grandparents on Christmas day? Do they want me to? Will I be able to recover enough from Christmas, to survive my biggest fear of New Year?

It is really hard to know. When I was unwell with Anorexia, I knew what was going to be hard and I knew what to expect. With this side of things, while I can imagine what might become difficult, there is also a high chance that something will swing out of nowhere. Or that I will be fine, or great, or fine and then not fine, a million times over.

Christmas with BPD is a lot like life with BPD, except the environment is different and it adds a whole new level of unpredictability.

I am very rigid in terms of a lot of things surrounding time and routine. I like familiarity. So, going away for Christmas is not ideal. Christmas is not ideal. And in writing this, I have for the first time realised that what others describe as me being rigid and inflexible, is actually me trying to find some way to have control over things around me so that I can reduce the risk of something around me sending my head into a whirlwhind. Looking at it now, it makes perfect sense.

So, how do you cope? You try and keep some things the same as normal; take your medication like you usually would, try not to change your sleep pattern too much, drink and eat properly (and regularly) and incorporate the things that usually help you cope. For me, a big one is getting some air, going for a walk. If Mum has forgotten something for Christmas dinner (which is basically every single year), when the shop opens for two hours, I go. If Mum has not forgotten something, perhaps I will conveniently run out of tobacco, or heck, I will just be honest and say I am going for a quick walk around the block. On Boxing Day I will force everyone on a walk with me.

If you live with BPD you know how unpredictable it is. Some things are reasonably predictable, other things hit you out of nowhere. I was sat somewhere a few weeks ago in the middle of the night, and I broke into tears thinking about the fact my parents separated eight years ago. I have never cried over that before.

My other big tip is to walk away from any family related chaos or conversations that you just cannot handle. My Mum is bound to make some comments about my Dad and I will be implementing the bite my lip, count to ten method.

I will remember it is OK not to be OK at Christmas because your struggles do not suddenly vanish; in fact many get magnified. I will remind myself nothing is all good or all bad. I will remind myself I can come back to Leicester and rant my head off at the mental health team I am under. I will focus on the things I love; giving presents, sitting around the table forcing everyone to wear their hats out of their crackers, being able to finally let myself eat multiple chocolates out of the tin, and inflicting my Christmas quiz on the entire family.

I will be silly and hyper, and keep the mood up, because that is what I do. And I will find the child within me because I never want to lose that (and to be honest, there is not much chance I ever will). And I will be glad we are all together, because every year there are a million points where the year could have ended differently and so I will hug my little sister tightly because time and time again we prove that we can get through anything.

Christmas and Mental Illness: Family

My family situation has changed a lot over the past six years. When my parents were together we spent either Christmas Day or Boxing Day at home, and then the other day at my Dad’s parents. The last years of life being this were quite difficult for me because of my anorexia, and I relied quite a lot on my Mum. All year round I tried to manage on my own, but once faced with Christmas dinner and extended family, I needed her. She would stop people trying to force food onto my plate and help me to cope.

When my parents separated we continued to do this, except obviously without my Mum, and then my Dad remarried (to the loveliest person in the world) and so she would go with us; one day at home with Mum and her partner, one day at my Grandparents with Dad and his wife. It was different, and hard in some parts, but it was also nice.

However shortly after Christmas 2015 we stopped having contact with my Dad, and consequently his family. Last year was the first Christmas not going to my Grandparents, it was the first year of going home from university and my sister having her own place, so I stayed at hers, and the first year I was really struggling and under the crisis team where I live now.

When I went home I was experiencing really difficult thoughts, but I was managing them by delaying the idea of acting upon them. I thought “I will see how I feel once I go back to university in January.” I thought we were all managing quite well. On Christmas Eve my sister and I both cried, and Mum cried because we cried, and we worked through it together. We did not really talk about the absence of my Dad because it was too difficult, but we were there for each other.

Then a few days after Christmas my sister and I had an argument like we have never had before. I think everything just got too much for us both, and due to us both having mental health problems we just could not manage it. The argument turned violent on both our parts, which has never happened before and has never happened since. The police were called and we were both taken to A&E; myself because I had broken my big toe and my foot was also badly cut, and my sister because she had hurt her own head after she chucked me out of her house.

Rather than staying at home for another week and getting the coach I had booked back, I booked a coach for the next morning. I came back to university early, with nobody else around. I had all of the medication I had not been taking for the previous three months and on the 30th, I took them all.

I do not remember anything. I woke up on the 1st or the 2nd with a catheter in. I was distraught. I was really distressed about the fact I had no clue what had happened, how I had got there, how I had behaved, and that I had had medical treatment that I was oblivious to. I got up and tried to walk, and my legs kept collapsing and I kept falling to the floor. I wanted to get out of the hospital and yet there was no way I was going very far.

I cannot really remember how I felt. I had been planning it before going home, but then after what happened at home I just… I knew I was going to do it. I came back to university and knew I was going to be alone for the New Year and I felt so, so alone. I have never felt so alone. I think what pushed me from wanting to do it, to doing it, was probably feeling like I had nobody to turn to. Even if I had wanted to seek help, even if I had felt brave enough to, I would not have felt like there was anyone. Not family, not friends and not professionals.

I am really anxious about New Year this year and I feel like I will probably cry a lot.

But, things are different. I am doing better. I pick myself up so quickly from blips. I have really good support. I still have not seen my Dad, but on Christmas Eve I am going to. New Year… I will celebrate it, as hard as it is to feel like doing so at all.

The thing about family when you have mental health problems, and especially when they do too, is that when you are able to support each other (which we do most of the time), it works really well. It can save you, it can keep you going and you can feel like you really are in it together. My sister once told me that I am like oxygen to her and that she probably would not be alive if it was not for me. We call ourselves the three musketeers; me, my sister and my mum.

But the problem is, when something goes wrong, when you are to the point where you are no longer able to support each other for whatever reasons, it can become really difficult. Families generally speaking argue at Christmas (lets be honest). But it gets really magnified. Christmas is such a wonderful time, but when your family has these kind of issues going on, it is also really hard. You try and be positive about it. I always think “OK, so my family situation is different and a bit messy but I am going to enjoy it with the people I do have and despite the mess”, and you try so, so hard to do that.

I am extremely lucky with the family I do have. We have a small Christmas. We do not make it into a big deal. We focus on spending time with each other and finding our own little bits of happiness within it, and I love that. BUT, that does not stop the things that hurt from hurting. You try and ignore those bits, because you want to make the most of what you do have… but sometimes trying to ignore that and push it away is harmful.

And even though I know this, I still know I am going to want to ignore those bits. I am going to be 100% happy, wonderful Natalie and I am not going to let myself get upset. I know I will struggle coming back to where I live. For the first time ever I am not in denial about how difficult I find coming back. But I feel like when I come back this year I have the right support. I will be able to vent a bit, get upset… or whatever else I am feeling.

It is really important to try and have someone around who can help you. I could not let many people help me when I was ill with my eating disorder, but I had my Mum and I let her help at Christmas when lots of family were around who thought that the best thing they could do was try force dessert down my throat even when I said “No thank you.”

It is difficult to express to someone any negative feelings you have, especially at Christmas because you do not want to bring the mood down… but it is important to have someone. It could be one family member, or a friend. Just someone. You might never have let them in before, but it could help to tell them even just a little bit; tell them that you might struggle. You never have to tell them everything, you do not have to tell anyone everything, but saying just something might help you. And there are lots of other ways to get support. A lot of mental health services will be shut, but you can make sure you get a bit of support before and after, and there are lots of helplines that will be open.

I have never called a helpline, so I know how much people can feel like that is not what they want to do. But at this time of the year when things can be very hard and other support is more limited, I think it becomes an even more important option for some. I mean, what is the harm in giving it a go?

I think the biggest thing I have learnt is that if you do cry on Christmas Day, as horrible as it feels, as much as you just want to be happy because you feel like you should be, it’s OK. You can actually be sad and cry, and also be happy and enjoy things.

Families are complicated at the best of times. Mental illness is equally complicated and difficult. The two combined at the time of year when it feels like you should be nothing but festive and cheery… it is OK to struggle. There is nothing wrong with it, and I can promise you that you are definitely, a thousand percent, not alone.

The End Goal is Recovery, Right?

I have stopped using the word ‘recovery’. This means that the sentence ‘I am in recovery’ is no longer going to be coming out of my mouth, which at first seems quite negative. But it is not the same as saying ‘I am not in recovery’ (which I would not say any way, because that would still be using said word).

I first began questioning ‘recovery’ when I found out about ‘Recovery in the Bin‘ on Twitter, although this was some time ago. I agreed mostly with everything they talk about, although maybe not to the same extent that they do.

I’ve done some reading on the recovery narrative, and how it has been taken over by neoliberalism, and places pressure on the patient. It is like you have to be in recovery. You have to be getting better, and it seems a bit… demanding. There are plenty of physical illnesses where patients are not expected to fully recover, and yet the emphasis placed on recovery within mental health seems to demand that you do, that to be fully recovered is the end goal.

We all need end goals… or think we do. That we do X, Y and Z, and then we have achieved the goal and that is done. However, I am beginning to think that there does not need to be an end goal, or at least for me personally; I can only ever speak for myself.

I am not being negative, I am not saying that I will not ever be what many describe as ‘recovered’. I just think maybe I will not, and maybe that is ok. It does not mean I am going to spend my whole life struggling or being a victim, it just means that I have come to an understanding that I might always live with mental illness, and that living with mental illness… well, it is not the end of the world. I can still be happy, still get on with my life and still be me.

The pressure of the recovery narrative is, I think, harmful to me. The pressure some professionals place on recovery is harmful. People can be discharged or excluded from services for not getting better and I do not agree with this. Why can we not support people in managing, even if they stay where they are? And I know the answer to this. If someone is not going to fully recover, they might (MIGHT) always need some degree of support from health services = not exactly cheap or ideal for the NHS. Mental health services are thinking about your discharge as soon as you are in them, their goal is to get you better and get you out.

But what even is ‘better’? I get a bit sick of, and sceptical of, the wonderful recovery stories. I had anorexia, and to some extent you could say I do. I am not fully recovered. It does not control me any more, I am not underweight, I manage my eating to varying extents. I do not need treatment any more. But neither would I make a fantastic magazine story. I am less ‘Woman Had Anorexia, Nearly Dies and Now She Loves Her Body and Eats Whatever She Wants and is Magically Amazing and Living Life to the Full’ and more ‘Woman Had Anorexia, Now Manages it’.

Not such a great headline. Not going to attract much attention aka not what anyone wants to publish, or talk about. It just is not that exciting.

And yet I am happy, fine and content with it.

When you are ‘ill’ people will throw stories at you of people who had Anorexia and now they are better and that becomes your goal (or should, apparently). I just never found any of that very helpful. Hearing from, talking to people who had fully recovered… I just felt like I would have found it more helpful to hear from someone who still struggles, but manages. Someone who is still living with it, but is getting on with their life, and is healthy and happy despite it.

‘Recovery’. ‘Survivor’. ‘Warrior’. These words just do not help me, personally. You hear people describe people who fully recover as being strong. Does that mean those that do not are weak? If you have not made a full recovery, does that make you a failure?

The recovery narrative, while it can be inspiring and motivating, also can be damaging. It can also be taken on by mental health services in a way that is detrimental to patients, puts extreme pressure on them due to the expectations involved, and is heavily linked to the discharge of said patients. Get them in, recovered, and out.

Borderline Personality Disorder was not an NHS priority many years ago. Help did not really have to be provided, because people believed it was a disorder nobody could recover from, and if you cannot get better, why treat it? And then the paper was published… ‘Personality Disorder: No Longer a Diagnosis of Exclusion’ because people realised actually, you can get better. And that was fabulous that it was now a bigger priority and not a death sentence and yet at the exact same time… why does an illness need to be something that can be gotten rid of, why does someone need to be able to fully recover, in order to deserve help? We sure as hell do not treat physical illness like that.

And you know, things can get bettER. Some people do describe themselves as fully recovered, and one day that might happen for me. It just is not my priority any more. Aiming for ‘recovery’ helped me a lot because it felt like if I was not getting better, I was getting worse and I dreamt of being one day, finally ‘recovered’. It gave me hope, or that is what I thought.

But because life has not worked out the way that said dream was supposed to go, and I have not fully recovered… the narrative of recovery, that goal, became unhelpful. We can live with mental illness without that being a negative thing. We do not have to ‘beat it’ to be strong, successful or happy. If we do feel like we reach a place where we are fully better, fabulous. I am not knocking that or saying it is not possible.

But if we end up living our lives with some degree of mental illness, that probably fluctuates over time… becoming sometimes worse, sometimes better… I just think that is OK and the more I think about it, the stronger my distaste of that word, ‘recovery’, becomes.

I am Natalie. I have mental health problems and I am not fully recovered. I might never be fully recovered. It does not mean in ten years time I cannot be in a relationship or having kids, or finally having my dream career. I do not need to be fully recovered and symptom free in order to have, or to deserve those things. I do not need need to sit in front of an employer and be able to say ‘I had mental health problems’ and I do not need to be totally fine to manage a relationship or not scare off potential partners. I do not need to be mental illness free to be a good parent and I do not need to reach some end goal of a full recovery to look back on my life and be proud of it.

Update 16/11/17

When I created this new blog, I decided to eliminate giving personal information about what is going on in my life; I felt it was “better” for myself, and my future. Turns out I miss it, a bit, and actually if I turn my blog into something that is entirely factual and not personal, it sort of feels like I lose something. I guess deciding to totally eliminate it is a pretty black and white approach, and there can be a middle ground where I can say so much, without saying more than I really feel comfortable with.

(So here goes…)

Things are very up and down. Being in hospital was really just one very small step in dealing with what happened, and while I gained and progressed a lot in that time, really a lot of the hard work happens when you come out of hospital. It is easy to sit in hospital and think when you are out, life is going to fall together. Towards the very end of my time on a section I think I experienced a bit of a honeymoon stage.

We knew I was coming towards the end of my admission, and so myself and the staff became a little reflective on the progress I had made from the start of my admission to the end. I was praised for “taking control”, reducing my risky behaviours and learning to use my voice. I was praised for no longer sitting in silence and for communicating with professionals better. And that was nice. It was. But I look back now and feel a bit like a dog being praised for sitting. I feel in some ways like I was putting on an act to some extent, to please people. To look like I was “taking responsibility” for myself, like falling apart had been a choice, a “wrong” thing, and something I had inflicted on myself. It felt a lot like professionals were happy with me for not appearing overly “ill” or self-destructive. Happy with me like if I was still being destructive, they would not be happy. That if I was still being destructive, they would see me as being “wrong”. Almost…misbhehaving, being “difficult”. A choice.

The honeymoon stage consisted of certain thoughts. I thought I was not going to need much, if any, outpatient support. I thought I was going to be able to work. I thought I was going to suddenly feel functional, be able to socialise more, and just…not go back to where I was. And I can do that, for very short periods of time. Note: short periods of time. It feels like I have a bad period, pick myself up, but then I can only sustain that for a brief while, before it gets exhausting and I cannot force myself to be ok any more.

There have been a lot of different things going on. I was admitted for a short admission, which I made incredibly short by asking to leave the very next day. Before that I was nearly¬† admitted once, and since then I have nearly been admitted again. My friend passed away. I do not know what words to give it that feel “best”. She committed suicide. She died from mental illness. She killed herself. Life killed her. Her past killed her. I mean people say they do not like the use of the word “committed” and I used to get that. I used to agree, and to an extent I still do. And at the exact same time, now I have experienced that loss, I honestly do not care what words are used. She is dead. You can dress it up however you like, but it is not going to change the situation. You can skirt around saying how she died, but it is not going to make it any more ok.

It is not going to bring her back. Nothing is going to bring her back.

Other things: my medication has been all over. Without going through it all, I am basically still on quetiapine (I have been for years), the lorazepam I started taking (after being threatened with being restrained and injected) in hospital is now being changed to diazepam so that it is longer lasting, and duloxetine, which I start about six weeks ago, has been stopped and I am going to see a different consultant to my usual one to discuss what may be more suitable. I also had my prescriptions stopped from being monthly pretty soon after my discharge, to weekly, for reasons you can probably guess. I was made to get an ECG due to, lets say, medication misuse, and there was this discussion of changing ALL of my medication because of an abnormality in my PR interval (basically something wrong with my heart). The plus side is, my self-harm is really quite stable for the first time in many years. The worst side of that is hard to discuss. I ended up in some very similar situations/identical situations, to when I was sectioned. The plus side of that is, the mental health team I am under were, and still are, incredible.

More things: I had some job interviews. The one I was offered and accepted, it was the best job interview of my life (not that I have had many). It was a number of hours with different stages (individual interview, maths/written test, group test) and I honestly enjoyed the whole thing. Sadly I had to later turn it down. In the back of my head I was thinking “Natalie, your doctor signed you as not fit to work for six months and would probably extend that considerably”, but I wanted to work so bad. There is a lot of pressure in society to work and be “functional”. Dealing with that, and the shame, is a whole other post – I am volunteering though, gradually picking up more roles.

I regained contact with my father. I had my first phone conversation with my Grandma this week. My eating is INCREDIBLY messy, although not insufficient (I have gained weight), but it has a lot to do with my anxiety rather than my past history of anorexia…so yes, a lot going on.

I have good days, I really do. Just an awful lot of bad days. Not showering. Not wanting to move. Living off cereal. Knocking myself out with medication. Avoiding things. Staring into space. Losing time. I mean god praise the nurse that comes to see me; I would not want to come and see me 80% of the time. Sometimes I think “jeeeez Natalie, stop being so bloody depressing.” I just turn into a zombie and I cannot see any light.

But then I do see the light sometimes. I guess this was never going to be easy. The year leading up to being sectioned was horrific, the events surrounding being sectioned were horrific, being in hospital was horrific (although necessary on reflection), and being discharged back into “the community” (that phrase makes me cringe), was never going to be easy, even if I thought it was.

 

Your Personality is Disordered

The diagnosis of Borderline Personality Disorder (or as some prefer, Emotionally Unstable Personality Disorder’) appears to be a much debated issue at current. The diagnosis of personality disorder has been a topical issue for a long time, but with the upcoming ICD-11, this has increased

The idea that changing the title of the disorder would change the treatment of those labelled with this illness is questionable to myself; how can the ‘new’ diagnosis not then become stigmatised itself? It seems likely that the public, and more to the point professionals, would see any move to another diagnosis as “oh that is now basically people that had BPD” and the same narratives would develop.

As someone diagnosed with BPD I do not struggle that much with the title. The use of the word ‘personality’ is what I believe is the biggest issue that people have; that to deem a persons personality as disordered is not a true reflection of the issue, and being frank, insultive. I think that is a fair comment, and many believe your personality is something that does not change. The problem here lies in that. If your personality cannot change, does that mean someone with BPD cannot get better?

But here are my issues with that: Personality can change, surely, at least to some extent. And why is there this fixation on being able to get “better”, to be able to “recover?” Personality disorders used to be seen as pretty untreatable, and therefore why should the NHS plug money into treating something that cannot be cured? Well, actually, they should. Some people have problems that do not get better, but that does not mean that they should not be supported in managing their condition.

The fact is though, contrary to that point, that people with BPD can and do get better. There is plenty of research to back this up, particularly in the area of DBT. It just so happens that the NHS often does not provide this therapy.

Back to the use of the word ‘personality’. I have to go against what I said to some extent; it does affect me. When I have been in A&E for self-harm, or even somewhere entirely unrelated and I am asked what my diagnosis is, or why I am on the medication I am on, I used to pretend I did not have a diagnosis. These days I say it, but the words come out of my mouth painfully, and I feel sick to my stomach. In my head I am concerned about what the person in front of me is thinking when they hear those words. They probably do not know very much, and it is quite likely that they know the stigmatising beliefs that exist surrounding the disorder.

Is my personality disordered? If you asked me to describe my personality I would use words such as ‘caring’, ‘sarcastic’, ‘humorous’ and ‘weird’. I would not for one second think of my mental health. I would not say ‘unstable’, ‘destructive’ or ‘mentally ill’. It would not cross my mind. My issues are less to do with my personality and much more to do with my mood and emotions. In some senses that makes the label ‘Emotionally Unstable’ seem more fitting, but that also makes you sound like you are overly hormonal and a mess (being honest). I once read about the use of the term ‘Emotional Dysregulation Disorder’. I genuinely believe that is more fitting. Living with BPD looks and feels a lot like someone who experiences Bipolar, except your mood changes unbelievably fast, medication is much less useful and you are more likely to have a history of trauma.

I do believe that ‘Borderline Personality Disorder’ and ‘Emotionally Unstable Personality Disorder’ carry a heavy amount of stigma. I do believe that there are better names, and I do believe that issues with personality are not at the core of this illness. But is the name the issue? No, not really. I can get over the name. I just cannot get over the responses it invites. The issue here is the way in which people living with these types of issues are almost blamed for the way they are. Not by all, but by many.

There are many problems within this; far too many to discuss here and now, but they lay in the belief that people with BPD, particularly those who self-harm, are attention seekers. That they just need to sort themselves out, like acting the way they do is a choice. I think to some extent, because it can be difficult to treat, it scares professionals, and it becomes easier to blame the patient, again because of this fixation on getting better.

What we need is a better understanding of the illness, irrespective of the name it is given. I personally feel as though the fixation on the name takes away from the real problem. Label me however you want. If BPD is how professionals can understand and group together my symptoms, so be it. But please try to begin to understand that this set of symptoms comes in many different forms and combinations, that each person is an individual, and that often people with BPD have found themselves where they are after years of trauma and/or abuse. Trauma and abuse that they suffered as children; children who never got the help that they needed. Yes, we need a lot of help. Yes, it takes a lot of time. But that is because of how ingrained our problems have become, for no fault of our own.

We know you struggle to understand, and heck most of the time we struggle to understand ourselves. But slowly, in time, you can help us find our way. No matter how we are presenting, we do not want this at all. However hard to manage we can be for you, it is no way near as hard as it is for us.