A Reminder of Why I Gained Weight

Sometimes I still catch myself looking back and wondering why I “let” myself gain 40lbs. Who does that? Who chooses to gain 40lbs? I feel like a failure. I cannot figure out why the hell I ever chose to do that. I regret it. But then I push those thoughts away and focus on the here and now.

Things have been slipping for months though. You see despite weight restoring I have never really “normalised” my eating; I still choose the lowest calorie sandwich in the supermarket, I still check the calories for restaurants and choose accordingly and I do not know the last time I chose something because I WANTED it. I avoid dessert unless I can “make up” for it, and I have a huge heap of food related rules. I do not eat things that my disorder stupidly labelled as “bad”; chocolate, burgers, sweets, white carbs, pasta, high fat foods (except peanut butter haha), crisps, non-diet versions of things you can get diet versions of, potatoes, milk, ice cream, chips…you can probably guess the kind of things. I eat the same breakfast, lunch and tea every day, and the same snacks, and the only variation I have managed to add in is different sandwiches at work so long as they are from the healthy living range, and different protein with my evening meal sometimes..but which is still limited to a few options.

I have been at my target weight of a BMI around 20 for a while now, but the food related rules have been plentiful. Eating out still scares me, Christmas still terrifies me although to a lesser extent…and I still often wish I could eat what the other people I am with are eating. I still avoid social situations involving food, I still long to eat certain things and I still feel like I deprive myself. And I convince myself it is ok because my weight is “fine.”

A year or two ago I started exercising again in the form of the gym. I have stuck to three times maximum mostly, with the occasional increase before reducing it back down. Three times is fine, I convince myself…while ignoring the thoughts I have. The panic at not being able to go because it is bank holiday, the panic that I might not fit in three times if I go home. The desire to go every day and the irritable mood I find myself in on my days off. The increased frequency of going an extra day. The obsessive thoughts about burning fat and building muscle.

It has gradually worsened. And in the last 6 months it has completely deteriorated. I had a few weeks where I was running three times, going to the gym three or four, and I ended up triggering an old injury and I felt suicidal. I know that sounds dramatic, but that is what happened. I have been weighing myself daily again, and when I was arrested and placed in a cell (don’t ask!), I was not bothered about the prospect of a criminal record so much as I was bothered about not being able to go to the gym; when I was released I rang my Mum crying that I could not go to the gym (it was too late) and that I was in so much pain I could barely even walk. (By the way I was not charged and I hadn’t committed a crime..it was mental health related and complicated – I will explain if anyone wants to know, but not on here!) I have been going to the gym extra days per week, doing a lot extra cardio and walking 10-20km every day, even if it means walking in the middle of the night.

I should have seen how bad things were getting but I wanted to ignore it. Or rather, because I am a healthy weight, I felt like I had to just act fine, pretend to be fine, get on with it. It was like I did not deserve to feel like I had a problem, and I know that the one person who really knows how things have been has been irritated with me for trying to pretend there is not a problem when it is blatantly obvious that there is, but the underlying issue has been the weight part. How can I need to cut down my exercise or eat more, or challenge my eating rules, when I am at a healthy weight?

But the thing is, being in that semi-recovered but still pretty damn disordered state leaves you not just miserable, but also very vulnerable to relapse, and while I feel like I only relapsed last weekend, it had been coming for a while. Last weekend I decided to lose weight. I was in bed when I made the decision and I planned to simply cut down a little on what I was eating, but then I got up the next morning and ate less than planned for breakfast, then skipped lunch and snacks, ate less than planned for tea, and skipped supper. I went to work without breakfast and had no lunch, I just ate a fiberone bar. Roll on to yesterday and I had a glass of unsweetened almond milk, some egg whites and veg…burnt 500 calories in the gym and 600 calories walking.

And guys, it worked. In 6 days I lost 6lbs. YAY WELL DONE NATALIE (not). How I feel reminds me of a quote by Marya Hornbacher:

“And when, after fifteen years of bingeing, barfing, starving, needles and tubes and terror and rage, and medical crises and personal failure and loss after loss – when, after all this, you are in your early twenties and staring down a vastly abbreviated life expectancy, and the eating disorder still takes up half your body, half your brain, with its invisible eroding force, when you have spent the majority of your life sick, when you do not yet know what it means to be ‘well,’ or ‘normal,’ when you doubt that those words even have meaning anymore, there are still no answers. You will die young, and you have no way to make sense of that fact.
You have this: You are thin.”

You are thin. And that is all you really have.

You are depressed, anxious, isolated, suicidal and empty. But you are thin. And at times your head convinces you this is what you want, especially at the start…but then one day it hits you. I remember a moment where it hit me in my last major relapse. It was 2011, I think. I was on an acute medical ward for refeeding in a general hospital. I took my first shower in the bathroom there and they had a full length mirror. I had been avoiding mirrors, and the sight of my own body reduced me to tears. I was thin, and that was all I was. I was nothing else. I was empty, and dying, and I cried. Usually I was pleased to lose weight, to be told I looked sick, to be wasting away…but it was like suddenly my eyes opened up to the reality, and I knew that this was not a life I could carry on living.

I remember looking at my body, seeing that I really was just skin and bones, and crying. I remember thinking “what have you done to yourself?” I remember having to crawl to get to bed because I could not walk at home, and as soon as I was in hospital, not being allowed to go anywhere except in a wheelchair. How can you be 19 years old and in this state for the third time?

 

 

So yes, I spent the last week losing weight as quickly as I could, taking diet pills that used to be prescription only on the NHS but were then banned for causing heart failure, and feeling moody as hell. I had a rubbish appointment with my mentor at uni. I have laid in bed making weight loss plans. I have worried about managing my degree and work, and doing pretty much anything. I have cancelled plans, avoided going home for my sisters birthday, and to be honest, been a wreck all while hiding what I was doing from everyone.

And then today I got up and I ate breakfast and I walked to Tesco and bought food, and I ate lunch and tea. I took the day off the gym, and after I had walked so far, I forced myself back home…and it was literally force. And I do not know how I have managed it. My stomach hurts. I have cried. I feel like I am about to gain a stone in the coming days and weeks, and I think I need to make the decision that a BMI over 20 is not the end of the world. That if I want to minimise the risk of relapse and stop living my life by so many damn food and exercise rules, I have to accept my body wants to be at a higher weight than eating disorder services told me to be.

Back to wondering why I ever let myself gain weight:

I did not gain weight because I wanted to gain weight. God if I had waited for that day, I would be in a grave by now. And that is the thing. An eating disorder is not a diet. There is no ‘end’. You just keep on going and I am one of those people who either eats nothing, or eats 3 meals and a snack every single day without failure. I am obsessive, and very rigid and that is how I go. There is no middle ground.

I have remembered why I gained weight.

  1. Social stuff! When I am losing weight and restricting I avoid people. I avoid family and friends and anything that might involve food. This is my biggest reason to eat; I am focusing on wanting energy for work and to help at an event on the 7th of June. I have arranged to see friends on both Monday and Tuesday, and my sister for the day after her birthday. This will be challenging, especially with food, but I know that being able to remind myself that eating = being able to spend time with the people I love will help me manage eating properly again. And I am not going to just try and return to where I was a few weeks ago…I want to start eating what I WANT and not trying to maintain a minimally “healthy” weight. I do not want to spend my life micro-managing my eating and weight.
  2. Because when I starve myself and become severely underweight I am an awful person. At my worst, as a teenager, I attacked my family, smashed windows while cooking, threw plates of food that my Mum was trying to force me to eat at her, and hid food in socks, pockets…anywhere. But beyond that…I was silent, empty, dead. I know if I relapsed I would sit with my mentor every week in silence, or talk and feel as rubbish and as guilty as I did yesterday. I do not want that life back. I do not want the life back where nothing is important except avoiding food and losing weight.
  3. I really, really, want to go back into treatment, and USE it. GET BETTER. If I go back there at the end of this year, two stone underweight, I will not be able to use it to get better. (It is not for eating disorders) I will struggle; I will struggle to talk because I will be a zombie. I will struggle with eating there. I will struggle to manage to physically cope with getting there and being there all day. Managing just to sit there in silence would be an achievement. I need to be better than that; I need to be able to make the most of it.

There a whole heap of other reasons; enjoying food, being warm, not wanting my osteoporosis to get worse, concentration, Christmas, energy…but those three are my main reasons.

It feels strange admitting what the last six months have been like, and what it has accumulated to in the last week. It feels scary to admit that I am not as “recovered” as I would like to think, or as I would like other people to think. It is hard to say that I have a lot of things I need to change, and possibly some weight to gain, when I am not really underweight and nobody can see that there is a problem.

But there is a problem. I do not care if you are under eating, or over exercising, or not; I am telling you that if you are psychologically obsessing over food, or have rules surrounding food and exercise that cause anxiety, make you depressed, and that dictate your life to you, you deserve more.

You deserve so much more. And I deserve so much more, and if I want to get anything from this week of hell, it is to get truly better for the first time ever, and make other people aware that being at a healthy weight does not mean you are “recovered”, or that you cannot gain more weight. And that being “fine” does not have to be the end. You are worthy of more than “fine” and I am here to tell you that just like me, you can fight for more. You can fight for more than just “fine” and for more than managing, and for more than having to follow your life with rules. I am here to tell you that being weight restored does not mean you cannot still be struggling, and does not mean you have to pretend to the rest of the world you are ok when inside you are still fighting a battle.

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While There is Life, There is Hope.

Pre-warning: This is a long post (like 99.97% of my posts). Sorry, not sorry.

I have quite a lot of rough patches every week, often at night time. It is not uncommon for me to spend the early hours of the morning walking around the city. More often than not I wake up in the morning wondering why the hell I was in such a state (and tired!)

I have also been doing a lot of reflecting while walking.

I think I have mentioned in brief that things took a turn for the worse in late December. I went to my hometown for Christmas. I stayed at my sisters new house and it was nice to begin with, although a little weird to see my sister independent and in her own place. I was supposed to stay until after New Year, but then something happened on the 28th of December and on the 29th I got the early coach back to Leicester.

I was not in a good place. I had stopped taking one of my medications a few months before; at first it was forgetfulness more than anything else, then it was a case of “well I didn’t take it most of last week so clearly I don’t need it.” My mood was dropping rapidly, and the obsessions that the medication was prescribed to treat became a lot worse. I cannot say it was stopping the medication that caused that, because it could just be coincidental, but what it did mean was that when I got back to Leicester I had a huge amount of medication sat in my bedroom.

I took them.

It’s hard to admit this. I am not sure why. Fear of being judged maybe. Fear of being open having an impact on how people see me, and on my future prospects. Fear of people who know me reading this, when only my family and a couple of close friends know about it.

I fell asleep in 2016, and when I woke up it was 2017. I was confused. Apparently on the day I gained consciousness I made a nurse call my Mum, before falling to sleep for 24 hours. When I woke up I made a different nurse call my Mum, panicking about the fact she would be worried about not hearing from me over New Year. The nurse told me that my Mum was saying I had contacted her the day before, but I did not remember at all. I do not remember anything.

I know it was serious. I know things could have worked out differently. But I feel extremely aware of the fact that for me personally, it was not the worst experience I have had. I was unconscious, and if at any time I was aware of pain or what was going on around me, I sure as hell do not remember it now. The worst part of what happened was feeling embarrassed. I had a catheter in, and when I tried to walk for the first couple of days I couldn’t. The medication gave me the side effect of a tremor when I was taking the normal dose, so the overdose left me violently shaking and my legs just buckled underneath me. But it honestly was not that bad.

Not that bad in comparison to other less “serious” things that I have done. There have been things I have done to myself that have been far more terrifying, far more painful, and to be honest, quite horrific. Largely because I was conscious. I have also been arrested while in a crisis, and when you are in that kind of state and locked in a prison cell for 16 hours, I can tell you that you leave even worse than you were to start with.

I have been thinking about these things a lot while walking, and the consequences of the suicide attempt; I was assessed under the mental health act, and told I had a choice between voluntary admission, or being sectioned. I agreed to go in voluntarily, which I am beyond relieved about. I got myself out quick, and I mean quick. Even the psychiatrist admitted he would not normally let someone out as fast as I got out. I was determined. I was thinking that if I stayed in there I was choosing to fight, and if I was going to choose to fight, I would be far better off fighting at home.

The hospital environment was bad for my eating; I was not eating at all and my weight was dropping, and I felt like my anorexia was re-gaining control shockingly fast. I knew if I stayed in there I was going to find myself with more problems, rather than less. I was dizzy and light-headed, and more to the point, it was making me feel better. I knew that was not good, and I knew it needed to stop. I was also due to start an internship, and that felt extremely important to me, and I made it very clear to the psychiatrist. I knew that I needed to prove to myself that I was capable of doing it, and that not doing it would have a really negative impact on me. I was terrified, of course. I wanted to run a mile, make up excuses not to do it, and avoid facing my anxiety; but I also wanted it, badly. I wanted it more than I was afraid of it, and doing it was one of the best decisions I made. In fact, in January it was just about the only good decision I made.

I was scared. I begged and begged my way out of hospital. I jumped through the hoops. I did what was expected of me to prove I was safe. I gave them no reason to use the mental health act against me again. It could probably have gone two ways; it could have gone badly. I remember getting home and while I was insanely relieved to get my freedom back because I cannot cope being stuck indoors for a whole day, never mind longer…I walked into my house very overwhelmed. I panicked. I thought I had made a mistake. I remembered what things had been like leading up to the admission, and as to be expected, I was doubting my ability to cope.

It also could have gone well. And it did. Sometimes there is such thing as ‘positive risk taking’ and this was that.

I still get myself in bad places. Having Borderline Personality Disorder means I often get myself into the worst kind of states, and then several hours later I am thinking “Girl, what was that about?!” It is extreme, a little dramatic and very frightening; I know I can do things that feel right in the moment, that in less than 24hrs time will seem ridiculous.

At my worst points, and on my walks, I have established some facts that help me to keep safe:

  1. I want my life to mean something. I do not want to be remembered as the girl who ended her own life. I want to do things that help people, and make my mark. I do not care how big or small that mark is, but I want to make it. Even in the darkest of times, the idea that in my lifetime I might make a difference to a single persons life, feels like a good enough reason to fight.
  2. People. And I do not mean fighting for people, or because people love me and losing me would hurt them…but that there are people who have done so much to help me, and I just cannot chuck that away. My Mum and sister have stood by me through thick and thin, even when I least deserved it. And professionals including my previous psychiatrist and various people at my secondary school, college and university who have still believed in me when I lost all hope, who have fought for me and simply never given up on me.
  3. Things can change for the better, and quickly. Just as things can get suddenly worse, they can get suddenly better. There are endless nights I have survived, and woke up relieved. One of the hardest things to do is be in a state of despair and believe that it is not permanent, but one thing I remind myself is that change is actually the only thing in life that is guaranteed.
  4. One of my common thoughts when struggling is that I have been fighting for so long, and that giving up is only logical. My mentor at university challenged this by saying that surely having been fighting for so long is a reason not to give up now, not to throw all of that hard work away. I’m not going to lie, when she first said that I was thinking that she did not get it, and it was a load of rubbish. BUT, on reflection, it is true. I did not come this far, to only come this far.
  5. Future treatment. During a recent bad night it hit me; I have an opportunity to go back to the therapeutic community and dedicate some time to working on myself. If I truly put everything into it, and do not self-sabotage it, it could really make a difference. I mean it might not, but it might. What is more the point is that it is with a service that I have gained a lot of faith in, with people I have begun to trust, which I did not previously. I mean regardless of whether the treatment method is ideal, I know the staff and other patients from experience are in equal amounts supportive and challenging; they are tough and sometimes hard on you, but in a helpful way. How can I give up before I have exhausted all options?

The biggest thing is, how can I throw my life away when there is hope for change, people who will stand by me, people who will not give up on me even when I do, and when I have the power within me in some small form, to do good?

If I give up there will be no more trying.  And while often trying feels much more like struggling, I will take the struggle because struggling can lead somewhere. I hate struggling, but at least struggling means there is hope.

While there is life, there is hope. 

I hope that if you cannot see a reason to make it through another day, you can hold onto the possibility that one day you will find a reason. I hope you know that although I am just a random stranger sat behind a computer screen who does not even know your name, I believe in you.

I hope you know that your kindness has to extend to yourself, and that your place in this world is important.

And I know this is cheesy, but I hope that you know that I am a human. I am real. And I am always only a message away. I care.

The Life Plan

My life plan right now is better known as the treatment plan. I’ve had a bit of a dilemma recently. I have a place at an assessment centre for a grad scheme. It was unexpected and it threw a spanner in the works. My plan was to fight to get back into the therapeutic community aka take time out, and then when I got onto the assessment centre I was thinking ‘Maybe I could just never go back to treatment and get “better” by just “getting on” with my life’. And it could work out. Treatment isn’t always the way to get better. Sometimes living life is. Maybe moving to London and doing a full-time grad scheme would help me get “better”.

However a draft email has been sat in my outlook account for the last week. A draft email stating that right now, due to health reasons, I can’t accept a grad scheme offer, therefore I need to pull out now. The reluctance to send it is the ‘But what if I actually got offered a place on the scheme? How can I turn that down?’ which is why I need to hit send. Because if I did get offered it, it would make my life even harder.

I had an “interim appointment” with the PD service today. A brief explanation if you don’t already know from my other posts is that in November I was, in short, chucked out of the therapeutic community (TC). I was “too unstable” and “too high risk”. I ended up on an acute psychiatric ward, and if you are deemed as being acutely unwell, you are not deemed ready for therapy. Since then I have just had an interim appointment in March.

Today a plan was made. My options were private, self-funded counselling which I was assessed for, and found for a VERY reasonable price; it’s with a charity, and they do student rates of £12 an hour! If you’ve ever looked into private counselling you’ll know you can pay £40-50 an hour minimum. So that was option 1, and would involve being discharged from the PD team with re-referral for the TC once ready and suitable (I’m not allowed back while people I was in treatment with last year are still there). Option 2 was to do a smaller, once weekly group for 6 months, starting in Jan with an interim appointment in May and fortnightly scheduled telephone support, then re-referral to the TC in July 2018. Option 3, which was the option I put forward, was to skip the once weekly group, have the interim appointment/phonecalls, and be re-referred to the TC as soon as I can be.

We are going with option 3! The downside is I won’t be having any formal support until that time comes, which should be November/December – but I will have an appointment in August, and fortnightly phone calls with my lead professional. They are going to work out the date they *think* should be the point at which I can go back into the TC process and let me know. I’m expecting it to be no later than December.

The TC process is a long one. You have to do a prep group first, on a Tuesday morning. If I started that in January, I’d expect to be finished in March/April. It took 4 months last time but I think this time I could be quicker. Then the actual TC is for one year. The TC is 3 days per week, with the occasional extra half day where you are expected to help run the prep group in blocks. Halfway (or 3/4 way) through the TC you join another group called Thrive, which would increase it further…Thrive is basically like the prep group, but it’s a post-therapy group…it’s preparing you for leaving the TC…and when you leave the TC after the one year, you continue going to thrive for either three or six months, I can’t remember. All in all you’re looking at 18-24months.

I am dreading it. The TC was the most exhausting, at times soul destroying, intense, sometimes toxic, environment I have ever been in. I found going there three days per week more exhausting than I would find a full-time job. All I wanted to do when I left each day was sleep. Weekends were spent recovering from the week.

The idea of going back terrifies me. It is by no means the easy option. It would actually be easier for me to try get on this grad scheme. I wouldn’t have to feel bad for not being in full-time employment. I wouldn’t feel like a failure because all of my friends are working and living their lives and going somewhere…and I am sat in a hospital. I wouldn’t have to turn down an amazing grad scheme. I wouldn’t have to worry about money. I wouldn’t have to go through intense therapy that is going to bring up some tough stuff; I am not a person who openly talks about stuff with people, so group therapy is really difficult for me. I am sat here right now thinking ‘oh f**ck what am I doing?!’.

But it’s the plan. And it is a good one. I can finish my current job because I will still be here in September, and honestly I was worried at the idea of having to leave the job early to move away for a grad scheme (grad schemes start in Sept) because I would honestly be absolutely gutted about it. People kept saying to me that I can’t not take a 1-2yr grad scheme because I want to finish the last month of a temporary contract and I was like UMMMM YES I CAN IF I CARE. So this works out soooo well for that. A grad scheme would also mean moving from Leicester at the start of Sept when my MA finishes on the 31st aka I would need to get my dissertation finished a month early which would be fun!

And how I am seeing this is…yes I am 25 this year and I thought I would be well into a career by now…but what is 1-2 years of my life if this treatment actually helps? Do I want a full time job where I am struggling and spending evenings and weekends in hospital or prison cells? Or do I want to focus on treatment, get myself sorted, and then focus on my career? In the long-term this could be the best decision I have made. I will be fully dedicating myself to treatment this time…rather than doing treatment plus university. This time I am going to give it everything. If I am taking a year or two out, I am going to make it worth it. While I do want to find part-time work, the part-time work will have to be second on my list of priorities.

So now I just need to work out how to get myself ready for returning so that I don’t get chucked out for a second time!

PLAN.

We also had some interesting conversations regarding diagnosis which I might write about another day, and it was raised that my exercise might be becoming excessive and/or obsessive and how to manage that.

A Shocking Fact About Mental Health

We all have it.

I know it doesn’t sound like a mindblowing fact, but apparently this is an issue. I recently saw, through a friend, a housing advertisement that said “we do not accept people with mental health”.

Now ignoring the fact that it sounds a hell of a lot like discrimination to me…I think they got their words confused because we all have mental health. Looks like this landlord doesn’t want a tenant!

Mental health does not mean mental illness. We all have mental health, just like we all have physical health, and it’s on a scale. We all have varying degrees of physical health, and this can worsen and improve at different times in our lives; it’s the same with mental health! You can have some issues with poor mental health without being mentally ill, without being in treatment and without y’know, seeing yourself as having an illness. Nobody is exempt from mental illness, or periods of poor mental health. Stress is a mental health issue, but being stressed isn’t an illness. We are so black and white when it comes to being mentally health and it’s a problem.

It’s recognising that we all have mental health that can lead us to being more understanding. People with mental health problems aren’t the ‘other’. They are me and you, your next door neighbour and your colleague from work. Rich, poor, black, white, lower class, upper class, heterosexual, homosexual, top of a business or right at the bottom…it does not matter. While there are higher risk groups for mental health problems and specifically for mental illnesses, they are just that, HIGHER risk; not the sole people at risk. Sure, if you’re born with stable parents, experience no trauma, have a good education, a great career and lots of supportive friends, yay because you are less likely to become severely mentally ill, but I hate to have to break this to you…mental illness does not discriminate, so it’s not all rainbows and butterflies.

Really I hope that if you don’t have a mental illness, you know that you still have mental health, and how you feel and cope is just as important. And if you do have a mental illness, I hope you know that even the people around you who don’t still have their dark times. I know it can feel like it’s just you, but it really isn’t, and the sooner we can all talk about our difficult times, the more acceptable it will become.

As for that landlord…using the wrong word was an accident, but it raises a significant issue with the way we think and talk.

(We’ll save the thoughts on not wanting a tenant with a mental health problem for another day!)

The Morning After the Night Before

I don’t drink. That’s right, not at all. A lot of people seem to struggle with the concept of not drinking at all and I’m pretty sure that says more about them, than me. I’ve had medical professionals be shocked because “people like me” usually drink and shouldn’t. When I say I don’t they have responded with “ok, but you shouldn’t drink at all if you can help it” like I don’t drink means I drink sometimes. Then there are the other times…taxi journeys where the driver brings up being a student in a city, and the night life. When I say I don’t go out they will usually go down the lines of “so you’re a pub girl”. No, not particularly. Next it’s “so do you just drink at home?”, followed by “a student that doesn’t drink, that’s odd!”.

It isn’t actually odd. I imagine many more students don’t drink that we would expect. My reasons for not drinking are complicated. I always say it is because of issues people in my life have had with alcohol and that it has put me off, but that would be a stretch of the truth. I want to say it is because when I first developed mental health problems at 14, I used to sneak alcohol out of my Mum’s vodka supply and take it to school in a water bottle and one time I went to a small party, got drunk, had a meltdown and locked myself in a bathroom, but again, the fact that drinking probably wouldn’t be good for me has very little to do with not actually drinking…just a lot to do with why it is probably a good thing. The honest reason is that it is a part of my eating disorder I have never overcome and really don’t feel a need to.

I didn’t go through the whole turning 18 and going out thing. I was at home starving myself to death, isolating myself from everyone and everything, and in my mind alcohol = a waste of calories. Why would I drink alcohol when I was only allowing myself 200 calories per day? Two vodkas and that would be all I could consume for the day. No thanks. And now I am “better” I challenge all of my disordered behaviours and thoughts, but with this one I just have no desire to. Take avoiding eating desserts. I have bundles of motivation to challenge that because you know, desserts are amazing and I genuinely want to be able to eat them. Hello cheesecake my long lost friend! But I’ve never enjoyed alcohol and it doesn’t interest me. I feel like I would be forcing myself to drink for the sake of drinking.

I do, however, know the feeling of the morning after the night before because having borderline personality disorder is great like that.

My mornings after the night before are filled with shame, embarrassment, and regret, and it is horrendous. Even months later the memories fill me with these emotions and when it is immediately after it quite literally makes me feel sick. I had one of these episodes this weekend. I won’t be going into the details because honestly, I am ashamed, and I really excelled myself this time. It went to a whole new level and the only thing I can think of to make myself feel better is ‘I won’t ever have to see the people involved again”. It has been a truly rock bottom moment and when it hit me what was going on and where I had led myself, I almost thought I was dreaming.

It is hard not to absolutely hate yourself for how you behave and feel at your worst. I feel like I want to rewind time and grab my own shoulders and give myself a good shake. WHAT ARE YOU DOING YOU FOOL?! Don’t be an idiot. Pull yourself together. Stop being so angry and take help.

However, there is a fine line between taking responsibility for your behaviour when you are mentally struggling, and blaming yourself to the point of hating yourself. While I absolutely believe I need to feel some degree of shame and regret in order to change, hating myself and over worrying about the way I was and the state others saw me in (aka what they were thinking of me) is not helpful; it makes me worse not better.

So after you have had a blip, a lapse, an episode or whatever else you want to call it, it is healthy to have some regrets and it’s a good thing to consider how you could have prevented yourself from getting to the stage of being out of control. BUT, if you blame yourself too much and are too hard on yourself, the guilt is going to eat you alive and you’re going to end up having another blip to cope with the guilt. Say your issue is drinking, and you get drunk and do something stupid and feel far too much guilt and self-blame…the risk is that you’re going to end up drinking again to manage that guilt. It’s counter-productive.

The line is fine and difficult to find, but it is a part of ‘recovery’ that you are going to have to keep working on because it is absolutely key to getting better. It’s all really about radical acceptance after these blips; you cannot change what has happened, and while you don’t have to be ok with what happened, you cannot punish yourself for it.

Learn. That is what you can do. Life is a series of lessons.

Borderline Personality Disorder and Emotional Dysregulation: Part One

There is a frequent debate about the term ‘Borderline Personality Disorder’ (BPD).

The term ‘borderline’ was coined in 1937 when it was believed that patients with the disorder were on the borderline between psychosis and neurosis. This is no longer seen as necessarily the case, and definitely not the case for everyone with the diagnosis, and today people prefer to call BPD ‘Emotionally Unstable Personality Disorder (EUPD).

I was actually asked which I prefer my diagnosis to be called, and I chose BPD. I know so many people hate this and choose EUPD, but being called ’emotionally unstable’, while probably accurate, just does not sit comfortably with me. To me, I think EUPD is a much more stigmatising label. ‘Emotionally unstable’ makes you sound, well, like an overly emotional mess and like someone to be avoided. It also sounds much more like one symptom of the disorder, albeit a major one, rather than a collective term for a set of symptoms. Ignoring that issue, I would prefer the term ‘Emotional Dysregulation Disorder’ which is occasionally used, but I actually think that BPD is more of an attachment disorder than anything else. There is a disorder called ‘Reactive Attachment Disorder’ but this is usually only diagnosed in children. I wonder what they think happens to these children when they hit 18? I think they probably, if their problems continue past that age, get diagnosed with BPD (which is usually only diagnosed in over 18’s).

That bothers me. Under 18 and I have an attachment disorder. Over 18 and I have a personality disorder, which is far more stigmatising.

Emotional instability, usually referred to as ’emotional dysregulation’ is a huge part of BPD. But this instability goes much further than emotions; it can be instability in a person’s sense of self/identity, and I think this can stem from being brought up in a very unstable environment. I think people would find out things about my childhood and call it pretty bad, and it was, sometimes. And sometimes it was not. Sometimes we were like any other family; happy and sad in “normal” ways. But things changed quickly and suddenly, usually without warning. I reckon growing up in that kind of environment, where you do not know what things are going to be like hour to hour, it makes you feel like nothing is safe, and that you do not know where you are going. One minute I had two solid, grounded parents and then in a blink of an eye one was back to abusing alcohol and the other was violent and would disappear off the face of the planet for a few days. There would be periods of stability in my Mum’s mental health, and then in the blink of an eye she would be carted off back to the psychiatric ward.

And to be honest, it felt normal. It was our normal. And when you live your life always ready for things to get worse, not knowing when it is going to happen, you become incredibly hypervigilant, and you develop ways of coping with it. Sometimes these coping mechanisms are unhealthy and dangerous, but regardless of that, they serve some kind of purpose. With regards to my anorexia and self-harm, I have often felt like those two things were always going to be there for me, that they were not going to abandon me, and so I clung onto them, sometimes with all my might, and other times just loosely, in case I needed them – never able to fully let go.

Education was my one positive coping mechanism, as I have wrote about before. School and college were always going to be there on a Monday morning at 9am. The supportive tutors, lecturers and support workers were always going to be there too. It was a safe haven, and especially during my time at school, it was the one place I did not have to pretend. This is quite different to some people’s experiences, where school is a place where they put on a mask, but for me school was where I could let myself feel my emotions and express them, and home was where I concealed everything. This was at times problematic as things would spill out uncontrollably. I would fall apart. But it was also needed at times. As I have become older I have gained a lot of control over this and while that seems like a good thing, it does mean that university tends to be a place I wear a mask to some extent – but I have a support worker within the university who I do not do this too. I guess it is more controlled now.

So, what is emotional dysregulation?

Emotional dysregulation (ED) is a term used in the mental health community to refer to an emotional response that is poorly modulated, and does not fall within the conventionally accepted range of emotive response. ED may be referred to as labile mood (marked fluctuation of mood) or mood swings.

This is something I have become increasingly aware of in myself over time. When I was in a child and adolescent psychiatric unit aged 15, I was diagnosed with cyclothymia, which is basically (and this is very simplified), a form of rapid cycling Bipolar disorder. This has never been mentioned again, and this is because while cyclothymia means that your moods change more frequently than found in typical Bipolar cases, my moods change much quicker than in cyclothymia, and approximately 50% of the time, in reaction to something happening around me.

It can be quite scary. Last Friday I ended up in A&E as I mentioned in my last post. I felt like I was at one of my worst points in a long time, and that was fair to say. Now, five days later, I am at one of my best points. It is a very unpredictable thing, that makes living difficult. I know that while I am feeling pretty good at this moment in time, in a few hours I could be laid in bed trying to sleep and having really negative, dangerous, thoughts and urges. While thoughts cannot hurt me, they can lead to me acting on them, which can hurt me. Learning to have these thoughts and feelings, these urges, and not act on them is one of the hardest parts of ‘recovery’.

When I am in the mindset of wanting to act on those thoughts, practically none of me can see any reason not to. I mean it varies; sometimes I can. Sometimes I can be very rational and recognise that feelings will pass, but other times the feelings are so intense and I lose grip of what I would call my “true self”, and there really is no talking me around when I am in that place.

I really want to end treatment and “get on with my life” as I keep saying. My support worker at university told me that while that would be very lovely for me to do, I need to think realistically about my ability to handle the responsibility of a full-time job right now. On my good days, I would be fantastic for a full-time job, but on my bad days, or during my rough patches, it would be a disaster. Right now, being a full-time student and working part-time is perfect for me. Work is absolutely perfect. I will admit I feel like I stumble my way through university. How I managed to get a degree, sometimes I really do not know. But it is manageable, and I am really lucky to have really accommodating lecturers. But in the working world, especially a full-time graduate scheme, this would be less likely to be the case which is why I am spending the next two days deciding whether it would be best to pull out of the graduate scheme assessment centre and focus on continuing with my treatment plan.

Does this mean someone with BPD can never have a full-time job? Of course not. I am sure thousands do. There are many extremely high-functioning people with BPD. BPD is often categorised into low functioning and high functioning (and I am pretty sure people can be a combination of the two). I think I am a combination of the two. Just the other day an A&E doctor told me he had never met someone with my diagnosis who was doing as well as I am, nor doing a masters. I reckon he would be surprised how many other people with BPD are doing high level qualifications, but that most of the people with BPD who find their ways into emergency departments are the ones who perhaps are not.

 

  • Low Functioning Borderline – The “Low Functioning” borderline is what most people think of when they are first introduced to the condition. Low functioning BPDs are a living train wreck. They have intense difficulties taking care of their basic needs, are constantly experiencing mood swings. They also have an extremely hard time managing any sort of relationship with another human being. Low Functioning BPDs are often hospitalized more than other BPD types, for the very reason that they can’t live productively without constant coaching and supervision. These patients are challenging for all but the most experienced psychiatrists. Unless otherwise treated, low functioning borderlines lead self destructive lives and attempt to manipulate those around them with desperate acts, including self harm (cutting, etc.).

(The comment regarding manipulation is not necessarily accurate. Often what appears like manipulation in BPD is just a person’s lack of ability to get their needs met, or express themselves, in a normal way – someone without BPD might need some extra support, and turn to a close friend and ask for it, whereas someone with BPD may struggle to recognise what they need and therefore find other ways to manage their feelings i.e. self-harm. Contrary to believing self-harm is a manipulative and attention seeking behaviour, self-harm is usually a very private, secretive thing – and any way, needing attention is not a bad thing. We all need attention.)

  • High Functioning Borderline – The High Functioning Borderline Personality shares many core aspects of the low functioning borderline personality, except for the fact that they can manage their lives, appear to be productive, and generally keep their relationships civil (even diplomatic in nature). High Functioning borderlines can appear to be normal, driven people one moment; then moody, inconsolable, and manipulative the next. Somehow, there is a mechanism within the minds of High Functioning Borderlines that allows them to lead somewhat “competent” lives, despite the fact that they are in a constant battle with BPD. High functioning BPDs are no better than low functioning: it’s basically the same face wearing a different mask.

 

 

These two “categories” are a bit too black and white for my liking. I am high functioning in terms of work and academically with my current workload. If I had a full-time job this would probably reduce. I am very low functioning in terms of mood swings, social functioning and self-destructive tendencies.

The thing about emotional dysregulation is, you can learn ways to manage it – and there are a huge number of ways that may or may not work for you personally, which I will discuss in a following blog (because I am on 1800 words and quite frankly that is ridiculous!)

In Which I Rant About Everything.

Apologies in advance for the abnormally open and long post.

I am a bubble of stress and anxiety. Mostly anxiety. I have in this learnt that anxiety is one of my biggest triggers for negative coping mechanisms and now I am looking at the past, I can’t see why I didn’t realise this sooner. I think I was in denial of it, because two people had brought up the idea that my negative behaviours are often a reaction to anxiety, and I totally dismissed it and to be honest, quite frankly felt annoyed at the suggestion.

It all just got too much on Friday and I ended up in A&E at 4am which was incredibly stressful, not helped by the A&E department moving to a new building with new procedures. I was a mess, but maybe I needed to be a mess. Maybe it helped as horrible as it was. A&E is usually the place where my meltdowns occur, like I’ve been holding myself together and then I just fall apart. Any way, I got physically sorted and had this lovely doctor who knew me already. He spent absolutely ages with me before I managed to talk but it was helpful, although kindness and people saying nice things about me always makes me upset and he seemed extremely worried. He said normally I seem a bit better after what had happened to end up there, but that this time I seemed a lot worse. I saw the mental health team after treatment for a few minutes, but that was unhelpful or rather, pointless. I was tired and calm, and not bothered about talking. I felt like I did the talking with the doctor and to be honest, considering he wasn’t a mental health professional, he was a lot better at helping me than the mental health team ever have been. I guess I got lucky there. When I first saw him I was thinking ‘oh god not him’ because I knew him, but he was amazing with me. He also said some interesting things about my diagnosis and treatment, and that he has never met someone with my diagnosis who is managing as well as I am, and studying for an MA which made me feel both good but a bit annoyed that being outwardly functional sometimes makes people over estimate how ‘well’ you are doing.

The doctor was discussing admission to the psych ward or crisis team input but as soon as I saw mental health it was clear that was out of the window, which was mostly a relief.  The following days were full of feeling anti-treatment and spending pretty much all night every night walking in the dark which on the first couple of nights was very dangerous, but on the last night, was very peaceful and reflective and last night I was sat up till 4am arguing with myself over a decision. I made the healthiest decision, the safest one,  and I feel calmer now. I’ve overcome most of the guilt and regret of ending up in A&E because I am a work in progress and that is ok. I pick myself up quicker and better than ever, and that is an improvement. I have time to improve further. This is not a race.

So yeah, I have *picked* myself back up again, which is good, but not exactly fun or pleasant. I’d rather not. I’d rather crumble. Correction, in the short-term I’d rather crumble because it is easier. In the long-term I will be glad I am not crumbling. I know where crumbling ends and I will not like it.

I think a big part of my stress is to do with treatment. Like, I was kicked out of the TC in November and things have felt so unstable since. It is like I am supposed to make myself stable while everything around me is the exact opposite. It doesn’t feel like the easiest of things to do.  I’m meant to be starting counselling privately but I’m re-considering doing a group at the PD service (same service as the TC) instead. I don’t know which will be best for me. I think I would prefer to do the counselling, but that perhaps the group would actually be best for me. But I have no idea what day the group is on, or if it is still an option, so I need to find out which means ringing them tomorrow. I don’t want to wait till next Friday because I’m starting my new job on Wednesday and if I am going to have to ask to swap my days around I want to do so in a way that is the least annoying for work so my plan is to find out what day the group is tomorrow, so when I go to work on Wednesday I can ask to change my days to fit the group, just in case I do the group. It feels like the best option rather than messing work around in a months time or whenever.

Now I want to do the group I regret stretching the truth with my responses to the initial questionnaire thing for it. And regret ruling it straight out without thinking. I am scared now that I won’t be able to do it aka more anxiety.

I am also stressed about life post-September aka post-university. I will be unemployed and that makes finding a grad scheme very attractive and I only have a few options that way because of timing. But then there is the idea of going back to the TC, which I had to be honest, ruled out, but I think that is largely a fear of what if it doesn’t work? Which makes me feel like not even trying for fear of ‘failing’, a fear of coping financially and really not wanting to return to a house share because it is SO bad for my mental health and my eating and my anxiety. And then a fear of not being allowed back even if I am “stable”. I don’t know how real that fear is. I’m just scared of rejection and uncertainty.

Also, I don’t know what timescales will be and that is probably quite unpredictable for anyone to say. I mean say I got referred back at the end of November, assessed or whatever by Jan..approved for prep, joined prep in say Feb or March? Like, what do I do between October and March. Financially speaking, and in every other way, it’s a worry.

I mean the best I can hope for is to get myself to this new job without using negative coping mechanisms/sabotaging it completely, ring tomorrow to find out about the day of the group, ask to do the group in my next appointment on the 12th, them agree to let me join, join ASAP, work on “stabilising” further, then when I finish uni look for more part time work in anything though I’d prefer something career related that might be difficult if I want part-time which realistically I do, apply for help financially and find a cheap as possible one bed place (house sharing would be financially better but it feels like such a bad move), finish the group and be re-assessed for the TC, then wait to join the prep group.

I don’t know how realistic the plan is. I’m worried that I won’t be allowed in this group now, but that can be replaced with the counselling and I will just have to work on not letting the issue I am worried with re: counselling, become an issue. I’m also worried that if I do still want to join the TC which at the moment I mostly do, that they will decide I am too well or something. You know, 2016: you are too unstable. 2017/18: you are too stable. That would be a turn of events and not ideal for me. Like stable does not equate well, or happy, or where I want to be at the end of all of this.

Then yeah, going back to work is making me a bit/a lot anxious. And other little things like this walk I am supposed to be doing to fundraise for a charity, some volunteering etc. And then university is a huge stress right now because I’m behind and not sure if I can make up the work, never mind get a decent grade. And then there’s other stuff, like sorting out my routine and sleep, which is a massive issue right now, and exercise and injury and eating.

I just really want some stability around me. I guess the primary things I think I need is a stable once weekly appointment of some kind, either the counselling or the group. To settle back into working. And to be managing a better routine – sleep, exercise, uni work and work being the priorities. Then adding in little things like the volunteering and actually seeing friends at least occasionally without getting so anxious that I cope using negative behaviours.

My psych appointment got cancelled, and while I am bothered, I am less bothered than I was because although I still want medication, that feels suddenly less important to me. Like sure the meds I want to go back on help my mood/anxiety/obsessions and it would definitely help stable me out a bit and ease those things, but there are other methods too. Of course ideally I would have meds plus the other methods but I guess there is no rush and hopefully I will get another psych appointment soon. Pinning my hopes on being allowed back on meds isn’t helpful and is potentially dangerous as I could be disappointed, so I am taking a few steps back from that idea.

I have an interview for a grad scheme and I’ve seen two other things I’d be interested in applying for, but it doesn’t fit in well with my current job which I need to be working in September for. I mean I know a longer-term job should be a priority over the temporary job but I really REALLY want to work there in September because it’s a key part of the campaign and I mean, yeah, I want to badly. And also, starting a grad scheme/job somewhere else in September really does not fit what I want treatment wise and so I am weighing up my options. While I really want to get a proper full time, permanent career job, I’m not sure I am “there” yet. I want to be there and I am trying to work out if I can just y’know, do it and find my way through it as I go…force myself to manage it. Or whether I just need to try and be ok with taking another year or so before getting into that kind of scheme or job and being 27 years old and just starting my career. I do feel a lot of pressure about being 24 and in this position, pressure to be doing what other people my age are doing and to be on the whole career route thing and I hate it. And I know, people say 27 is still young but I wanted to be in a career by 22 and it just really gets to me.

So if I am going to take the treatment route and take time out, I am going to really prioritise therapy and give it everything I have got so that once I am done, I truly am done. Which is very good motivation, it makes me feel very determined. I feel like if I go to the appointment on the 12th and have a clearer plan in my mind, I will probably improve a lot in terms of my mood and negative coping mechanisms and so that feels really important right now. I want to give up and run a few hundred miles from treatment for fear of failure and rejection, but I know what I need more than anything is to feel…I don’t know, contained and safe, and stable.

The sooner the 12th is here the better right now. Going a couple of months between appointments and having no set clear plan is just really unhelpful for me. It’s unsettling and it makes me feel unstable. I struggle to hang onto the plan at the previous appointment for such a long period of time.

I sent them a letter asking to be discharged on the 12th and while I am proud of myself for clearly asserting what I wanted at the time, I think it could have been a wrong decision. I literally woke up that morning with the idea and wrote the letter and sent it all in the space of two hours. It wasn’t exactly the best thing to do so quickly. I’m going to find out about the options with the group and not make a decision right now. I’ll go to my appointment on the 12th and discuss all options openly and without putting a heavy preference on any option, and decide there and then based on the positives and negatives, the options, and just in an appointment where I will be thinking rationally and won’t be making decisions based on feelings or misinterpretations of what other people are thinking.

Plan. My focus between now and then is manning up and going to work on Wednesday, working on my routine and university work. Keeping up the exercise while managing injury, and doing this sponsored walk. I also think I need to stop being so negative about trying mindfulness because a lot of my impulsive behaviour is connected to thinking far too ahead and panicking and the whole being in the moment thing sounds like a very good thing despite my dislike of the idea of mindfulness. Plan. Plan. Plan.