Hope 24 2021

I’m so sorry I haven’t blogged in ages! Been having a lot of sleep and energy issues recently and sleeping more than I’m awake, and haven’t had the motivation to do much writing. I’ve started a few posts and not finished them, and I really am going to try to keep up with blogging more…

Last weekend was Hope24, which is my favourite running event of the year. It takes place in Newnham Park near Plymouth and it’s all trail running, across a field and through woods and it’s so scenic. Every lap is five miles and you can set a tent up near the start/finish line to keep food etc, or to have a sleep. The atmosphere is amazing and the organisers are incredible. Such an awesome event!

I was a bit nervous going into the run because I haven’t been running much recently as I’ve been sleeping so much and had no energy. I’d also run London to Brighton a few weeks ago which was horrible- so, so hard both mentally and physically and I wasn’t sure another ultramarathon was a good idea. But I love Hope and didn’t want to miss my favourite race so I went ahead with it. I made sure I had lots of sleep the night before and stocked up on electrolyte tablets with caffeine to try to stay awake during the run!

The first lap wasn’t too eventful but was HARD. I genuinely think my body has forgotten how to run- even when I try to make running movements, it’s like forcing my body through sludge and I’m slower than if I were walking. At the end of the first lap, a guy I know asked why I wasn’t running and my reply was “I am!”; my running speed was so, so slow and I couldn’t go any faster. London to Brighton was the same and it’s so frustrating to consistently get overtaken by walkers. But I was determined to run as much as I could however slowly I was going.

Mentally, the race was really, really tough. I’m having a lot of issues with obsessive and distressing thoughts at the moment and it was really hard to distract from them. I tried everything I could think of- DBT skills like observing and describing my surroundings, turning the mind, radical acceptance (which I still can’t get my head around and which I’m planning a blog post about), half smiling, thought blocking, imagining thoughts on a conveyor belt, thinking of thoughts as firings of the brain… I even tried listening to Blackadder in the hope that laughing would help! But nothing seemed to make any difference, and it got worse as the race went on.

The scenery was amazing though and describing it (out loud) did help to distract a bit even though the thoughts came back as soon as I stopped. The route was so nice- up a hill and through some trees, over a field and up another hill, a long downhill through the woods then up the other side. No bluebells this time of year but there were foxgloves and thistles.

After 20 miles, I stopped for a coffee break as well as the caffeine tablets because I was starting to get really tired by that point. Had a cereal bar and a ten minute rest, then back to the running. I had a ‘photography lap’ where I took some more photos then it started to rain so I had to put my phone away.

By the evening, I was completely exhausted and finding the obsessive thoughts really, really hard to manage. I was also feeling upset and angry which didn’t help, and having a lot of negative urges. It had also started to rain which got heavier as the night went on, and by midnight the trail had turned to rivers of mud and it was really hard to run without falling over, especially when you’re already totally distracted and feeling horrible. At about 1am, I stopped to get more coffee and some food, and waited for the rain to ease off which ended up being two hours later by which time I’d tried to quit then asked for my timing chip back!

At 3am, the rain was more drizzly than deluge so I headed back out again. To be honest, I can’t remember much of the night apart from feeling really upset, crying a lot and lots of obsessive thoughts. When it got light, the rain was on and off which, along with the light, helped a bit but by 7am I couldn’t deal with the thoughts any more and decided to stop. It was the right decision, I think- I was so tired I couldn’t see straight and things were moving that shouldn’t be, and I felt horrible. So I handed my timing chip in and got my medal.

Once I got back to the B+B, I slept all day until 6.30pm, briefly tried to watch the F1 but fell asleep partway through and slept till 6am the next morning. Drove home and had DBT, then fell asleep again for the rest of the day! So I think it really was the right decision to stop. I feel rubbish about it though :/ it’s the first time I haven’t finished a 24 hour race and I feel like I should have been able to complete it. But I’ve realised that the people who keep telling me that I’m not well enough for ultrarunning are right- physically I don’t have the energy and mentally I can’t deal with the extended thinking time. But it’s yet another reason to fully commit to DBT and trying to recover!

Another weirdly positive psychiatrist appointment!

Sorry if this blog post doesn’t make a lot of sense- am currently feeling overwhelmed and totally exhausted but wanted to try to get some thoughts down before it all turns to mush!  I had an assessment today at the eating disorder service where I was inpatient from 2005-2007 and outpatient until 2010 which I was really, really nervous about beforehand but actually went surprisingly well.  Trying to get my brain into some sort of sense atm so if it seems a bit jumbled, I’m really sorry!  Haven’t been feeling great over the last few weeks and have had a lot of negatives thoughts/urges which have been really hard not to act on and my brain is pretty much total fuzz most of the time.

Was so, so nervous before the assessment- apart from visiting a friend a few months ago (which was also really weird and I found hard to deal with), I haven’t been back to the unit for nearly 10 years and it felt really strange going there this morning.  I was also extra-nervous because I’ve had a lot of contact with doctors over the last couple of weeks  because of feeling rubbish and spent a night in A+E last week which the doctor said he would pass on to the psychiatrist so I was a bit worried about what sort of impression I was going to make.

I decided to walk into town (about an hour and a half) in the hope that I’d calm down a bit before getting there but was still really shaky and feeling sick by the time I got there.  It took three loops of the road to actually get to the door and my brain was completely fuzzy by then- when I was filling in the forms in the waiting room, I kept getting spellings wrong including my own name!  Luckily I didn’t have to wait too long and the psychiatrist took me to a room which I’d thankfully not been in before because I think that would have been way too weird.

It was a new psychiatrist who I hadn’t seen before but I’d heard about him from a friend who also sees him, and he was really nice.  He had my notes from last time which was a big relief because I didn’t have to start totally from scratch, and he actually seemed to listen when I was answering the questions.  The initial assessment took nearly two hours then had to go for ECG and blood tests, then back for physical obs and a chat about the outcome of the assessment- LONG day and was absolutely exhausted afterwards but hopefully worth it.

The assessment was really, really thorough and so different to ED assessments I’ve had before.  He didn’t give me any screening questionnaires or quizzes to fill it (which was a definite relief because I HATE them and usually end up annotating them so I don’t come across as completely hopeless) and just asked lots of questions.  It wasn’t all about ED thoughts/behaviours either which was another big relief because most of what I’ve been struggling with recently is more mood-related and negative urges, and he kind of linked everything together which again was really positive compared to the really frustrating ‘boxes’ approach that I’ve experienced a million times before where ED doctors only talk about ED symptoms and other psychiatrists won’t talk about ED-related issues and usually I’d just get told that it’s all autism-related anyway.  But it wasn’t like that at all and he even seemed to ‘get’ what I was trying to say when I couldn’t find the right words to describe it!

ECG and blood tests went OK- my veins are rubbish so as usual, it took several tries, butterfly needles and dizziness before actually getting any blood but for once I didn’t faint which was a big relief!  Then back over the the unit for physical obs.  The results of the ECG were slightly abnormal so I have to go back for a ‘heart echo’ and have 24 hours wearing a heart strap which I’m a bit nervous about but my ECGs are often a bit weird so wasn’t too worried about it.  Physical obs were fine; I get a bit nervous about people being that close to my body and it must have showed because the doctor started talking about random stuff to distract me and it turns out he used to watch Bad Girls which is the TV show I’ve been obsessed with since I was 13 and is currently the only thing that seems to work to distract from negative urges!

After the physical checks, I had to see the psychiatrist who assessed me along with the consultant to discuss the outcomes.  Looking at it at first, it wasn’t anything earth-shatteringly different from what I’ve had before but the wording IS different which completely changes my treatment plan which is kind of a big deal.  He gave me a formal diagnosis of borderline personality disorder and atypical anorexia, and said that he is going to refer me to a dietician and for dialectical behaviour therapy.  The main difference is that he thinks the ED is part of the “bigger picture” of BPD whereas before, ED and autism have always been the ‘main issues’.  I’ve had BPD mentioned several times before (most recently at another relatively positive psychiatrist assessment: Positive psychiatrist appointments actually exist!!) but always as ‘traits’ instead of a formal diagnosis.  Having an diagnosis of it as the primary issue means that I can actually get specialised treatment for it which is a MASSIVE relief because for me, it’s the extreme moods, fixations on people, paranoia and suicidal thoughts/urges which are the hardest to deal with and I really do want help to learn to manage them.

I’m still trying to process it properly and am feeling v overwhelmed at the moment- overall, it took nearly 5 hours and was completely exhausted afterwards, but feeling strangely positive about it and especially about being able to access dietician support and DBT.  Even though my weight’s ‘normal’ thanks to medication side effects, I still find it hard to vary my diet outside of porridge and soup, binge on fruit most nights and can’t eat in front of people or outside of ‘set’ times which I really, really want to work on.  I’ve been teaching myself DBT skills for years now but it’s really hard to put in into practice on your own and I’m really hoping that being able to access it properly will help.

I fell asleep as soon as I got in from the assessment because I was so exhausted after it but this evening has been the first time in weeks that I’ve actually felt motivated enough to do something other than watch Bad Girls (again) or just lie on my bed feeling rubbish which has been most of my summer holidays so far.  So I’ve actually written a whole blog post (!), semi-cleaned my kitchen and going to try to stay up till at least 10pm instead of taking sleeping tablets so I can go to bed at 8pm which is what I’ve been doing over the last few weeks because evenings have been horrible and so hard to deal with.  Trying to keep hold of the positive feelings and really hoping it’ll last…!

Positive psychiatrist appointments actually exist!!

This is a bit of a random post because it’s not based around any particular ‘theme’ or event (although to be honest, not many of my recent posts have been!) but thought it was worth a blog post anyway because for me, it’s pretty massively significant. On Monday, I had an assessment appointment with a new psychiatrist which I was really nervous about and not expecting much from it (usually I just get told that because of autism, they can’t help). Amazingly, it was a weirdly positive appointment!! She was very direct and honest which I need, and ridiculously thorough to the point that the appointment took nearly two hours and she’s making another one to finish it off.

The most amazing thing was that she actually didn’t just write everything off as autism- she thinks that personality traits (specifically ’emotionally unstable personality disorder’ AKA borderline personality disorder) are more of an issue at the moment and wants me to read up about it more before the next appointment. AND she’s willing to actually work with me on it!! WOW. Have been reading about it and literally it’s like someone read my brain. So weird and amazing to read about other people experiencing the same sort of thing and to have an actual, real ‘reason’ for feeling the way I do.

This book in particular is amazing:

It’s a really detailed and well-written ‘guide’ to BPD and writes in detail about all the different symptoms, thought processes and behaviours without judging or sounding overly negative or stigmatised about it which a lot of the articles I’ve read have been. It actually made me cry to read it because it made so much bloody sense. Even obsessions, being too ‘intense’ and issues with keeping friendships! I could literally quote half the book in this post but am going to focus on a few pages that I found really, really useful.

This page is incredible. It sort of links to something a friend said to me a while ago that you can’t ‘get rid’ of obsessions or extreme emotions, you just need to learn to manage them and this book explains it in such an amazingly positive way. And it even says that learning to manage the intense feelings will eventually mean that they are less intense which would be an absolute miracle!! Having had 19 years of feeling like I’m never going to be able to deal with it, it really seems like an unreachable goal but definitely one I’m willing to work bloody hard to achieve. Honestly, if I ever manage to be able to deal with intense feelings and obsessions, I think my life would be relatively good and I’d be ‘normal'(ish). New life goal!!

There’s even an actual link to eating disorders in the book! And the really amazing thing about it is that I can totally relate to how it links BPD and ED, much more than I can relate to most ED-specific books or articles. For me, it’s always been about managing extreme emotions and obsessions- low enough weights actually stop them completely which was why I was desperate as a teenager to lose weight. The main reason I binge isn’t for the actual ‘binge’ part; it’s because throwing up helps to shift the intense vertigo-y vacuum inside my stomach. Apart from exercise, that’s the only thing that actually helps with it and gives me a sense of relative calm.

Similar to above, restricting your diet can make you feel calmer and more in control. I can relate absolutely to this page and although i know it’s stereotypical ‘ED’ to be about control, mine has always been more about not eating certain foods or food groups than the weight itself. That came later and only because I realised it stopped intense feelings and obsessions.

The hardest part of the whole autism/BPD mix for me is making, keeping and managing social relationships. I lose A LOT of friends from being too ‘intense’ and I’m constantly scared that people are annoyed or upset with me, find me too annoying, boring or clingy, or don’t want to be friends with me any more. It’s bloody hard not to keep texting friends to check and I used to do that a lot, which would lead to friends asking me not to contact them any more. Now, I’m a lot more aware of it and it really is a relief to read that other people experience the exact same thing and I’m not just a paranoid, intense, horrible person. I can also relate to wanting to just give up on friendships completely but the intense loneliness is too hard to deal with. Makes you feel like you’re trapped in a cycle of paranoia and loneliness that you can’t escape from. But this book says that this is one of the symptoms which you can learn to manage through DBT and awareness which seems too good to be true but am DEFINITELY willing to try…

The last page I’m going to talk about is about self harm. When I read this, I had to re-read it because it described exactly the thoughts and urges I experience on a regular basis. It honestly is an intense self-directed anger and hatred that makes you want to literally scrape your skin off and rip out your flesh which gets channelled into cutting or hitting depending on the situation. When it’s overly intense, it can get to the point where you want to disappear or not exist which can lead to (for me anyway) overdose of medication but I always end up throwing it up ten minutes later because I don’t actually want to ‘die’, just not exist or more specifically, for the intense feelings to not exist. It’s like wanting to kill a very specific part of you (I’ve been calling her ‘borderline bitch’) which I hate and would do anything to get rid of.

The other really positive aspect of the appointment is that I’m changing medication!! Coming of quetiapine which has caused horrible side effects and increasing aripiprazole to make up for it. Really, really hoping it helps!! Anyway, would DEFINITELY recommend this book to anyone who has, knows anyone who has or is interested in BPD/EUPD- it’s an incredible book 🙂

ED relapse warning signs

I’ve been looking through some of my old stuff from when I was an inpatient nearly ten years ago, and found this list I wrote with the psychologist I saw at the time about warning signs for relapse into ‘severe’ ED again.  It’s actually still kind of useful!  Some of it isn’t relevant any more (eg college-related) but a lot of it still is, and it’s helpful to think about. I’m going to be 30 in December and I really, really don’t want my 30s to be the same as my 20s, which have been mostly influenced by ED thoughts/behaviours,  both directly and indirectly.  I want to be free from the constant brain arguments, restrictions and urges to binge/cut, and I want to be able to do things spontaneously without stressing about how it’s going to impact on my daily routine/meal times.

I’m trying to make my own ‘treatment plan’ atm based on the inpatient ‘programme’ I’ve followed several times before, DBT skills, acceptance and commitment therapy ideas and solution-focussed which a friend recently introduced me to and I really like the concept of although it’s kind of hard with ED because I genuinely can’t think of times when it’s not an issue apart from running ultras, and even then it’s only because I’ve ‘earned’ the break from the restrictions by running over 40 miles.  But I really do want to change and learn to mange it properly this time- it’s been 17 years and I’m exhausted with feeling like I’m going in circles but getting nowhere.  Hope this list is helpful to some people 🙂

Yellow

  • Not sleeping much at night
  • Drinking a lot of diet Coke
  • Being irritable/snappy
  • Sleeping during the day
  • Weighing regularly
  • Only eating at certain times
  • Change in exercise habits- less intense exercise, lots of walking/swimming
  • Spending a lot of time on social media
  • Eating in a certain order or with specific plate/cutlery
  • Feeling ‘hyped’, can’t switch off
  • Feeling sick/dizzy
  • Getting obsessed with recipes or cooking programmes
  • Skipping breakfast or lunch
  • Using a lot of salt

 

Amber

  • Eating meat
  • Fixating on certain foods (often not healthy) eg reduced calorie chocolate, lower calorie sweets, low fat biscuits etc
  • Cooking food for other people
  • Staying in, watching TV, not doing anything ‘active’ or productive
  • Focussing on nutrients of food instead of actual foods eg need to eat 10g of protein, doesn’t matter what the protein is but also needs to be under 100cal per 20g of protein
  • Taking on several jobs/courses at once, need to be busy all the time
  • Neat handwriting, being unusually organised
  • Don’t want to cook or be around food in front of people
  • Not interested in reading, writing or drawing
  • Finding it hard to concentrate
  • Feeling shaky all the time
  • Prioritising walking over anything else eg walking three hours to college and back every day to ‘fit it in’
  • Bedroom messy and not cleaning because of stuff all over the floor, feeling overwhelmed
  • Driving too fast or erratically
  • Feeling like time is speeding up or slowing down
  • Getting angry more often
  • Feeling like there’s no point
  • Becoming fixated on numbers about food- timings, grams of nutrients in food, weighing foods, number of chews etc

 

Red

  • Not eating in front of people
  • Passing out regularly
  • Losing weight even after periods have stopped
  • Dissociating more than usual
  • Sleeping a lot of the day
  • Not going out for days at a time, don’t want to see people
  • Not exercising at all
  • Thinking about food all the time, having binge dreams
  • Lying about food or weight
  • Eating less than twice a day
  • Skipping college
  • Getting angry or snappy talking about food
  • Having panic attacks or similar several times a week
  • Tired all the time, not feeling ‘with it’
  • Fixating on a certain weight (usually around 7.5 stone) as a ‘magic’ solution
  • Throwing up not just after a binge
  • Going several days without eating
  • Not feeling ‘real’
  • Only thinking about food or weight

Horcruxes

Just a short post today because my brain is frazzled, I’ve been awake pretty much consistently for the last four days, got up at 2am this morning and keep needing to remind myself where I am, why and what day it is!  Been a bit of a stressful week, feeling rubbish and getting meds withdrawals (on day five without them) so actually writing this feels like processing thoughts through peanut butter but I really want to get one last Harry Potter post in before the Cursed Child release at midnight tonight!!

So, Horcruxes.  I realise this is a bit of a random topic to write about but the more I’ve been thinking about the bitch in my head and how I’m trying to manage her constant arguments and influence, the more I’m realising that it’s closer to the concept of Horcruxes than I’ve ever thought about.  It’s taken a while to conceptualise the horrible thoughts, urges and brain arguments as anything other than just ‘me’ being a horrible person and for the last year or so, I’ve seen it as a ‘bitch in my head’ (see Inside my head… for a proper explanation about that) and she has direct access to my thoughts, feelings and urges which I need to identify and try to manage, and one of the ways I’ve found useful for that is through Occlumency and other strategies from Harry Potter which I wrote about in Mental Health Awareness Week 2016, Part One: HARRY POTTER.

Thinking about that made me realise that the bitch in my head is actually close to a Horcrux- a part of someone else’s soul which is evil and sometimes takes control of my thoughts and emotions in a way that I don’t like but, importantly, it ISN’T PART OF ME.  This is really, really important as a way of conceptualising it which has taken a long time to actually accept and try to believe- when I have paranoid, obsessive thoughts about other people or about myself, it doesn’t necessarily mean I’m a horrible person because I try really hard not to act on the thoughts/urges and I don’t want them in my head, and that means that there must be a ‘me’ outside of those thoughts/feelings/urges that ISN’T weird, obsessive or horrible and that’s the part I want to keep and is actually ‘me’.

Not sure if that makes sense?  I started to realise it after a conversation with a friend I’ve known for years but don’t get to meet up with that often, and who is someone I really look up to and trust.  We met for coffee a couple of months ago and she was talking about spirituality and the idea of a ‘still space’ inside you which is the part you need to connect with and that doesn’t judge or anything like that, and I really liked the concept even if I still don’t fully understand it.  When I knew her ten years ago, she recommended Paulo Coelho’s books which I read and loved, especially Veronika Decides to Die and Eleven Minutes which taught me that it’s OK to be different and not fit in, and that ‘normal’ is relative and actually conformity is the worst thing people can do because it goes against the natural ‘self’ and who you actually are.  There are so many amazing quotes from those books and I’ll list a few which I found really useful at that time (and still do now):

“You have two choices, to control your mind or to let your mind control you.”

“Haven’t you learned anything, not even with the approach of death? Stop thinking all the time that you’re in the way, that you’re bothering the person next to you. If people don’t like it, they can complain. And if they don’t have the courage to complain, that’s their problem.”  (THIS IS SO IMPORTANT AND TRUE!)

“We all live in our own world. But if you look up at the starry sky – you’ll see that all the different worlds up there combine to form constellations, solar systems, galaxies.”

“When I took the pills, I wanted to kill someone I hated. I didn’t know that other Veronikas existed inside me, Veronikas that I could love.”  (Kill the Horcrux, not yourself)

“At every moment of our lives, we all have one foot in a fairy tale and the other in the abyss.”

“That’s why I’m telling you: don’t get used to it, because it’s very easy to become habituated; it’s a very powerful drug. It’s in our daily lives, in our hidden suffering, in the sacrifices we make, blaming love for the destruction of our dreams. Pain is frightening when it shows its real face, but it’s seductive when it comes disguised as sacrifice or self-denial. Or cowardice. However much we may reject it, we human being always find a way of being with pain, of flirting with it and making it part of our lives.”  I’ve put part of this in bold because when I first read it aged 19, I could identify with it so strongly and wrote an intense diary entry about it which I’ve since lost which is maybe a good thing but I would be interested to re-read it.  Definitely worth a blog post at some point…

Having written out those quotes, I really want to re-read Paulo Coelho now and I think it deserves several blog posts of its own!  But the point I’m trying to get clear in my head is that ten years ago, the realisations I got from reading Paulo Coelho probably set the framework for the way I’m thinking about the bitch in my head and Horcruxes now, and it’s amazing how your thought processes can grow and develop over your lifetime.  The recent conversation with my friend (which was actually one of the first proper conversations I’ve had with her in ten years which is pretty incredible considering how much I’ve learned from her and how much she’s influenced how I view my life probably without even realising it) has helped to solidify it and she mentioned some more spirituality-type books which I’m going to read and hopefully be able to learn from…  I really like the idea of connecting with a part of ‘you’ which isn’t the obsessive, paranoid part and I think it’s similar to the way you sort of ‘zone out’ in a good way during long runs and get an amazing feeling of freedom and calm- trying to learn to manage that without having to run 40 miles first!

Sorry this is a bit of a rambling post, brain really not focussing clearly at the moment but I wanted to try to explore a bit the idea of Horcruxes and how Occlumency can be useful in trying to stop the direct access to thoughts and emotions.  It links to Paulo Coelho because it’s a lot like mindfulness- focussing on the present, trying to ‘close your mind’ to paranoid or obsessive thoughts, not fixating or focussing on them.  Harry uses mindfulness consciously in Deathly Hallows when he tries to stay fully ‘present’ as a way to stop Voldemort being able to access his mind and to manage pain or intense emotions that aren’t his own, and this is really useful to learn from and apply in a DBT-type way to managing thoughts or intense emotions from the bitch/Horcrux in your head.  Will try to expand on it when my brain’s a bit more functional but wanted to introduce it as a concept!  Hope at least some of it makes sense 🙂

Week review: DBT in practice- ACCEPTS

Last week was pretty rubbish emotion-wise.  I’ve been struggling a lot with feeling overwhelmed and vertigo-y, and it’s been getting worse over the last few weeks.  I’m also coming to the end of my current job and am about to start a new one, which is making me feel really anxious too so quite a lot going on at the moment.

After the losing a close friend, I had a pretty intense emotion crash which resulted in a lot of bingeing/purging and compulsive exercise which I’ve been trying really hard to manage over the last few months (after moving into a shared house and obviously don’t want my new housemate to know about that sort of thing) and I made a conscious decision to use DBT skills at every possible opportunity, not just when I’m feeling desperate or paranoid.  I’ve also decided to focus on one DBT skill a week in a blog post every weekend so this can be my ‘skill of the week’ for last week…

One of the distress tolerance skills I’ve found really useful this week is ACCEPTS.  DBT is full of acronyms which I kind of like because it makes it easier to remember the skills, and this one’s been particularly useful because it’s mainly about managing intense feelings/thoughts even if you can’t totally identify them which has definitely been true for me this week.  A stands for Activities, or doing something you enjoy.  I’ve been posting way more blog posts than people are probably interested in this week but it really has helped as a distraction technique and to try to express or regulate how I’m feeling.  I’ve also started drawing again which I’ve been really lazy about recently and am in the process of rereading the entire Sweet Valley High series which has actually become my go-to distress tolerance technique because it’s accessible via Kindle, easy to read and I ‘know’ the characters so well thanks for obsessive reading and fanfiction as a teenager, and it kind of feels like going home which is an amazing feeling.  I’ve kind of missed some of the characters (Olivia Davidson in particular- I’m avoiding the earthquake books!!) and it’s nice to read about other characters who feel ‘weird’ or like they’re getting things wrong as well as constantly aspiring to be more like Elizabeth Wakefield.  I learned a lot of social skills from SVH and I’m relearning some now, which I might end up blogging about at some point…

C is for Contribute- helping out other people.  I volunteer at Mind which I love, and recently started helping out again.  I love it for so many reasons; partly because I learn a lot from the groups too and from listening to service users, partly because the people who run the groups are awesome and I get a lot from listening to them too, and partly because I like feeling ‘useful’ or that I’m actually doing something constructive.  I’ve been doing voluntary work for nearly 17 years and it’s part of my life that I can’t imagine not doing, and I’ve got more from that than nearly anything else.  It’s amazing for everything from learning skills, acceptance, self esteem to basically anything positive you can think of!

The second C is Comparisons, or comparing where you are now to where you have been in the past.  This is a really useful one because it makes you realise that you have actually achieved stuff even if it feels like you’re constantly messing up.  A few years ago, I couldn’t keep a job and was ‘fully’ bingeing every day whereas now, I’ve had a job for over four months, I’m not living at home any more and the bingeing has reduced massively to low-level a few times a week.  I’ve also managed to be more assertive with relationships that aren’t healthy and am managing paranoid or obsessive thoughts so much better than a few years ago where they would literally take over my brain to the point where I couldn’t think about anything else.  Yes, I’m still feeling rubbish and get paranoid or obsessive on a regular basis but it’s nowhere near as intense and I’m hoping it’ll keep getting gradually less until it’s actually manageable…

E is the big one- Emotions, or more accurately OTHER emotions.  The point of this is to try to ‘displace’ the intense negative emotions with something positive that can distract from the intensity and make it more manageable.  My go-to way to do this is to watch The Big Bang Theory which is one of the only TV shows that is guaranteed to make me laugh and it really does work!  By some amazing coincidence, this week was the finale of season nine and had me in absolute hysterics which was AMAZING for temporarily getting rid of the vertigo and heart-clogging feeling I’ve had a lot over the last couple of weeks.  Won’t give it away for TBBT fans who haven’t seen it but it really is very, very funny!  Sometimes I wish I could watch TBBT several times a day to get the serotonin hit and to help to manage intense negative emotions, but playing scenes in my head does sometimes help (particularly if I pretend that I’m acting as one of the characters) and that’s something that might help other people with similar experiences?

P stand for Push away, or distracting your mind from whatever it is that you’re obsessing about or from negative emotions.  This is where I’ve been using my emotion card (see Opposite Action in action for more about that), and my rule is that I have to try at least two things from there before I can do anything potentially not-helpful.  Sometimes it works and it distracts for long enough for the urges to binge or cut to reduce to a more manageable level, sometimes it doesn’t.  But definitely worth a try!

T is for Thoughts- trying to manage the thoughts or make yourself think about something else.  This is the one I still haven’t managed to do properly so don’t really have much to add about it except that the theory is that by ‘making’ yourself think about something else, it sort of displaces the negative thoughts already there but my problem is that when I’m having obsessive or paranoid thoughts, I genuinely can’t get rid of them or think about anything else so I’m trying to find an alternative strategy…  For me, a couple of things that have helped are to ‘talk back’ to the thoughts like another person- I have a ‘bitch in my head’ who shouts at me a lot and a lot of the thoughts come from her, and I find it really useful to try to respond to her in a more compassionate or rational way, not to criticise her but to accept what she says and listen to her without actually believing her.  It sometimes helps, and the paranoid thoughts in particular are starting to reduce in intensity…

Last one is S: Sensations.  The idea of this is to use sensory stimulation to distract from the emotions, and it’s something I find especially useful because I tend to experience emotions ‘physically’ through vertigo, feeling like I’ve been punched in the stomach or chest, stinging feelings, dissociation, dizziness, feeling vacuum-y etc.  I have a few techniques I use a lot but smell is a big one- I carry smelling salts in my pocket and use them whenever I start to feel zoned out or dizzy and it really does help to ‘bring you back’ quickly and help you feel more ‘real’.  I also burn scented candles a lot to try to calm down, and play music to alter moods (I have a ‘mood stabilisers’ playlist as well as ‘happy/positive’ and ‘feeling rubbish’).  Taking a cold shower also helps if I’m feeling angry or overly hyped, or a hot bath if I’m feeling low or zoned out (careful with having a bath is you’re feeling dissociated, can make you feel worse and be dangerous- only if you’re just a bit ‘zoned’ or ‘unreal’ and not actually out of your body!).  I also use ‘soft’ things a lot and that’s really useful if I’m feeling low, vertigo-y or shaky; somethings wrapping up in a soft blanket and hugging a soft toy really helps to neutralise the vacuum or vertigo feeling.  There are obviously a lot of not-as-helpful sensation strategies which I won’t go into here, and it’s definitely best to use more constructive ones first if you can and see if that helps.  I tend to avoid taste-type ones because of ED issues but a lot of people find drinking hot chocolate good for feeling low or anxious, or eating something strong-tasting if you’re feeling zoned out.

Hopefully that makes sense and some of it is useful!  Will try to do a post like this about a different DBT skill every week…

TOO MUCH EMOTION

This is a bit of an unfocussed post so I’ll apologise in advance for that.  I’ve been feeling intense vertigo and stinging in my chest over the last few weeks which are hard to explain properly, and this post is kind of about that and the loss of a close friendship and ways I’ve been trying to deal with it.  A lot of it will be about DBT skills because I’m finding more and more that it’s the only approach I’ve found that really does seem to have any sort of positive effect and at the moment, my life feels like a constant attempt at emotion and occasionally crisis management which is EXHAUSTING and horrible but I’m trying to trust the DBT philosophy that emotions eventually peak and subside and I’m trying to be mindful of that and the way it’s affecting my body and thoughts as well instead of acting instinctively or impulsively to reduce the intensity.  It’s been a bit up and down but I’m still writing blog posts and haven’t totally quit everything so that’s a definite positive!

This scene from ‘Harry Potter and the Order of the Phoenix’ is, for me, one of the most emotional scenes of the whole HP series and one that’s definitely underrated.  It’s from the end of the book after Sirius has died and Harry’s struggling to cope with the loss and with his guilt about Sirius’ death.  In this scene, Dumbledore is annoyingly calm and detached which makes Harry feel even more angry, hurt and alone and when I first read it aged 16, I could completely relate to Harry’s violent urges to hit Dumbledore and smash his things because that intensity of emotion is HORRIBLE especially when it involves feelings of hurt, guilt and loss which are three of the hardest negative emotions to manage even on their own.  Harry’s reaction of ‘I DON’T CARE’ is a completely natural and typical response to being unable to deal with intense and conflicting negative emotions in a situation that you don’t understand and can’t control, but Dumbledore’s reply of “You care so much you feel as though you will bleed to death with the pain of it” describes exactly how that intensity feels physically.  There’s so much emotional complexity in this scene that goes far deeper than the loss of Sirius- Harry’s feelings of intense hurt and confusion from Dumbledore’s apparent indifference towards him over the year, his guilt in being a part of the situation that killed Sirius, his fear of being completely alone.  It all culminates and builds up inside him in a way that he can’t express or manage, and his experience of intense emotion is something that a lot of people who experience intense, overwhelming or conflicting emotions that they can’t understand or express can relate to.

A while ago, a close friend asked me not to keep contacting her which really, really hurt, and I’ve been finding it increasingly hard to manage my feelings about it.  At first, I felt really upset and cried a lot which was (I think) a typical reaction to the loss of a close friendship, but it started to hurt more intensely as time went by and the urges to contact her again became stronger.  It felt like intense vertigo and like there was a ‘vacuum’ inside me as though someone had sucked out all my organs and gradually that emptiness became filled with a heavy, cement-like feeling which is still there.  I started to feel more zoned out and ‘slowed-down’, and have found it hard to concentrate on anything much over the last few months which hasn’t helped with starting a new job (which, thankfully, I’m nearly at the end of the contract for now).  Then, over the last few weeks, I started to get a stinging feeling in my chest which feels like someone’s opened a wound there and is tipping salt into it, and I keep randomly crying with no real trigger or becoming so exhausted and overwhelmed with the feelings that I fall asleep which is both a massive relief and annoying because I feel zoned out for the rest of the day.

It also hasn’t helped that there’s been a lot of (unrelated) stuff going on recently which has involved a lot of things that remind me strongly of my friend, and that’s made the urges to contact her so strong that they’re sometimes so overwhelming that I’m physically hitting the side of my head to try to get rid of them and last week, I acted on the urge and sent her a message which she didn’t respond to and although it helped to reduce the urge at the time, I felt like the worst person in the world and so guilty about it the next day.  The feelings are so horrible at the moment that I can totally relate to Harry’s ‘I’VE HAD ENOUGH…I WANT OUT, I WANT IT TO END’ but I know there’s no constructive way to do that apart from the obvious which isn’t an option because of children I’ve worked with and am very close to, and the possible impact that could have on them.  I’ve also had a lot of thoughts recently about distancing from the kids and from the two people I’m currently ‘friends’ with, but I think that could hurt them even more and I don’t want to hurt anyone at all.  So I’m not really left with many options but I REALLY needed to do something because I genuinely can’t deal with it much longer and I’m scared I’ll do something impulsive and stupid to manage the feelings- I’ve kept it at low level bingeing/purging and superficial cutting at the moment (using DBT skills to manage the intensity which I’ll come to later) but I’m a bit worried the bingeing will swing to full-scale bulimia if I’m not careful or I’ll stop eating completely in the hope of getting rid of the emotion completely (see Obsessions for more info about that).

It’s been particularly bad over the last couple of weeks and I’ve been thinking a lot about unfriending my friend on Facebook so that I don’t have her updates on my feed but also so that I can’t act on the urges to keep messaging her (I don’t know her current email or home address and she lives abroad so texting’s out).  It was a really difficult decision for several reasons- I didn’t want to completely lose touch with her because even though she’s hurt me a lot over the last year or so, I still really miss her and the connection we had; I really, really don’t want to hurt or upset her, or make her feel the way I have done over the last few months and I’m not sure I could cope with the guilt if she did; we were friends for nearly 20 years which is a really, really long time and she knows more about me than anyone else ever including mental health professionals I saw for seven years; it’s my fault the friendship broke down because I was too intense/clingy and I really don’t want her to be upset because I’m shit at managing relationships and get paranoid.  But last night, I spoke to an old friend I haven’t seen in nearly ten years but who I was close friends with at school and she pointed out that if my friend had realised the impact asking me not to contact her would have, she wouldn’t have said it the way she did and that shows that the close connection we had’s already broken, and that made so much sense so last night, I unfriended my ex-best friend.

It was genuinely one of the hardest things I’ve ever done and I feel like such a bitch about it.  I couldn’t stop shaking and spent most of last night fighting urges to email her via her old email address, send her another friend request or try to message her but someone I really trust told me not to email because it would make her more upset so I didn’t contact her but I feel like the worst person in the world and a really, really selfish, bitchy and horrible person for unfriending without an explanation.  I’m feeling less shaky today but still really, really guilty and a bit zoned out.  I HATE my brain and how selfish I am.  I know that now it’s up to her if she wants to contact me and that she knows my email address and phone number so if she wants to, she can but I’m really, really hoping she won’t be feeling upset or hurt that I’ve unfriended her.  It’s not that I don’t like her- I do, but I can’t cope with this sort of feeling any more and I need to do something for self-protection and so that I don’t lose any relationships I currently have.  But I hate myself so much at the moment- I know it’s totally my fault and if I wasn’t so selfish, clingy and paranoid, it wouldn’t have got to that stage in the first place but this happens with nearly every relationship I have and I don’t know how to stop it.  I hate the way my brain (and body) react to situations like this and how intense it is, and I especially hate the intense urges which swing from ‘I need to contact this person NOW’ to needing to binge/vomit or cut to try to force out the guilt and horribleness inside my body.  I HATE MY BRAIN and I hate the way my body reacts physically.

Since I unfriended her, the vertigo has intensified and it feels like someone’s trying to pull my stomach out through my chest, and the intense stinging is like my heart’s being twisted and ripped out.  It’s horrible and it’s affecting the way I’m feeling in general- it took four attempts at getting dressed this morning to find something I felt OK in to go out the house and my mood’s even lower and more ‘shaky’ than it’s been over the last few weeks.  I’ve slowed right down to present moment and thankfully I don’t have work today, and I’m focussing on getting through each hour at a time.  I still feel like such as bitch though and I really, really want to apologise but DBT interpersonal skills say that you shouldn’t apologise unnecessarily even if it feels like you should.  So that brings me to the first DBT skill I’m going to look at- FAST.

FAST stands for fair, apology, stick to values and truth.  The aim of the skill is to manage interpersonal relationships without compromising your own self esteem or emotional wellbeing, and I think it’s a really useful (as well as really difficult) skill to use.  Being ‘fair’ applies to the other person but also to yourself, and involves being assertive and also listening to the other person.  I’ve tried this already and although I haven’t been as direct as I’d like to have been with her, I’ve been open with her in the past and she knows me well enough to know that I wouldn’t unfriend her in a passive-aggressive way.  It’s self-protection and although I haven’t said that directly, it would probably make things worse if I did.  I genuinely have tried to be as fair as I can.

According to DBT, over-apologising when it’s not completely justified can have a detrimental affect on self esteem and self respect, and make negative emotions worse.  It also points out that by apologising unnecessarily, you negate the effect when you actually do apologise which is something I hadn’t really thought about but is probably true.  I’ve been thinking about the situation a lot and although I still think I should apologise for unfriending her, I can see that by doing that, I’m emphasising my ‘fault’ in the whole situation and that’s not going to be helpful for trying to reduce guilt and get over it.  So I’m trying to be mindful of the guilt and urges to apologise without acting on them which is HARD but I think that if I can manage it, it could be a really positive thing.

Sticking to values means keeping to things that are important to you.  I find the concept of values hard but I know that being fair, direct, accepting, honest and assertive are qualities that I really respect and value in other people so I’d hope that they are values I can try to embody too.  In this situation, I don’t feel like I’ve really stuck to those values but I can’t see any way I could do without actually contacting her and explaining.  I have been accepting of her decision to stop the contact though and I think I’ve been as fair and direct as I can be, so maybe I’m halfway there.  It’s a hard skill though and I think I need to practise it a lot more before I’m able to actually use it properly.

Truthfulness is something that’s really important to me anyway and I think I’ve been as truthful as I can be.  Before we lost contact, I had mentioned to her that I was getting paranoid about people not actually being friends with me or wanting to keep in touch and I’ve always been open and honest with her, so I think she knows enough about how I think and react to know why I’ve acted like this.  If not, I’m h0ping she also knows me well enough to know that I’ll always be honest and truthful in emails so she can email me if she wants.

 I’ve also been using a LOT of the emotion regulation skills to try to deal with the intensity of emotion, both physical and emotional, I’ve been experiencing.  I won’t go into opposite action because I’ve already talked about it a lot in Opposite Action in action- more DBT!, but I’m going to look at other strategies such as seeing emotion as a wave and being mindful of emotions.  Both of these involve trying to distance from the emotion and seeing it as something that happens to you rather than being a part of you which I find really hard to get my head around in relation to emotions but I’ve managed in relation to thoughts via the bitch in my head (Inside my head…), and I’ve been trying to link this to emotions by seeing my emotional state as something that the bitch in my head can hijack and gain access to via a skeleton key she’s got which gives her direct access to my feelings and emotions which she can then use to her advantage.

So for me, a big part of emotion regulation is trying to prevent her from having access to my emotions by accepting what she says without believing it, talking back to her and trying to be more compassionate towards her so she’s not as angry and sometimes that helps but sometimes she gets in before I’ve realised it.  That’s when the DBT emotion regulation skills come in and they’re a lot easier to apply when the emotions are a result of the bitch in my head rather than being an intrinsic part of ‘me’ and how I’m thinking or feeling.  Seeing emotion as a wave is based on the idea that emotions peak and eventually subside so if you try to distract or tolerate the emotion, it will eventually ease off to a more tolerable level.  I have a distress tolerance card which I’ve been relying on a lot recently to try to manage emotions, and it’s something I would recommend to anyone who experiences intense emotions- the idea is that you do at least two things from the card before any unhelpful behaviour and sometimes it does distract for long enough for the emotion to start to subside and (for me) the positive feelings associated with not acting on the emotion are often enough to help it subside completely to a point where I can manage it more easily.  It’s definitely worth making a card if you don’t already have one.  Mine’s colour-coded to make it easier to use when I’ve feeling intense emotion and that can help for some people.

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I’ve also been trying to be mindful of emotions which is really hard but it’s a skill I’m finding increasingly useful the more I practise it.  The basic idea is to observe and be aware of your emotions (even if you can’t identify what they are) and not judge them, and just ‘let’ them rise and fall.  It links to the wave idea and I’ve been trying to imagine emotional intensity rising and falling like waves, and sometimes this is easier than waiting for the wave to peak because it often feels like it won’t!  It’s really hard not to judge emotions though especially guilt or anxiety, and DBT thought and emotion defusion teaches you imagine the thought or judgement like leaves on a stream- recognise and acknowledge them but let them pass without fixating on them and this takes a LOT of practice but I’m starting to find it useful, especially with obsessive thoughts.

Outside of DBT skills, the other thing I find really useful for managing difficult emotions and trying not to act on them is use fictional characters as a sort of ‘channel’ or outlet for that emotion.  I’ve been doing this in various ways ever since I can remember but the most useful ones at the moment are the Sims and through Carrie Mathison from Homeland (I did a post on this a while ago called Learning emotion regulation via Carrie Mathison).  The Sims is a bit of a weird one because it can either be really, really useful or makes things a million times harder so I’m always a bit wary when I use it, but sometimes it can be really useful.  In a situation when I’m missing someone but know that contacting them would be too much, it’s actually really beneficial to ‘talk’ to that person on the Sims because it really does feel like you’re actually communicating with them and it can help you feel less lonely.  At the moment, that’s not a good idea in this particular situation because even seeing her as a Sim makes me feel really upset but what I have found useful on the Sims is creating an ‘ideal’ version of me and levelling up skills and career roles so it feels like I’m actually achieving something and that stimulates the same dopamine release as if you were actually doing something positive.  I know it’s not ‘real’ but as a short-term emotion management technique, it’s pretty useful and doesn’t involve annoying other people.

The other thing I’ve found really useful is rewatching parts of Homeland season five and trying to learn about relationship skills and emotion management from Carrie’s relationship with Saul.  Throughout the first few seasons, Saul is Carrie’s mentor and close friend and she really respects and looks up to him in a way she doesn’t with any other character, and there are several examples where they save each other’s lives or connect with each other on a deeper, more personal level and in season four, Carrie is described as “his child, practically”, and that really is the kind of relationship they have (although much more from Carrie’s perspective; there are also examples where Saul has ‘used’ Carrie to suit his or the agency’s needs).  But in between seasons four and five, Carrie and Saul have had a breakdown of their relationship and are no longer talking.  Carrie finds this difficult to deal with, particularly as Saul’s values seem to be diametrically opposed to her own, and throughout the season she attempts to reconnect with him.  When she is led to believe that Saul is trying to kill her, she describes their relationship as “someone I trusted more than I’ve ever trusted anyone” and there are a lot of examples of this throughout the series and of their mutual trust and respect for each other which, in some places, borders on an almost familial love.

In the other post, I wrote that “We don’t find out in Homeland what could have happened to make them split so intensely but I think from a self-protection perspective, Carrie couldn’t allow herself to become so emotionally vulnerable again which is why, when Saul tried to make up with her, she wouldn’t let him, telling him, ‘I’m not that person any more.’  When I first saw this, it genuinely made me cry but I really do accept why Carrie made that decision- she needs to protect herself and she’s come so far since season one/  Sometimes it’s really hard but you need to move on and accept that sometimes even very close, long term relationships end.  People change and you can’t do anything about that . It’s horrible, genuinely feels like you’re being punched repeatedly in the stomach and your chest is being ripped open but staying attached to the person that someone used to be isn’t helpful for either person.  Carrie made what is for her the right decision, and Saul needed to accept that.  It’s not going to be easy for either of them and there is an intense part of me that really, really wanted them to make it up but I know that wouldn’t have been possible and that one of them would have had to change and compromise themselves which wouldn’t be the basis for a healthy relationship.  Saul helped Carrie to grow and develop as a person and she provided him with emotional support and trust when he needed it, but they both changed and it was time for them to move on.”

I’ve been watching that scene over and over and although it’s made me cry and feel as though my heart’s being ripped several times over, I can see how Carrie needs to completely distance from Saul in order to rebuild emotionally and to protect herself from that intensity of feeling.  I’m guessing she must feel as guilty as I do at the moment, especially when Saul says, “Goddammit Carrie, I need you” and she replies, “And I said, I’m not that person any more”, and it must have been so hard for her to make that decision knowing that it was partly because of her that the friendship broke down and that she’s hurting Saul by cutting him off emotionally, but I think it really was the right decision.  She needs to protect herself and not allow herself to become emotionally vulnerable, and she can’t risk the same friendship break up happening again.  The emotional bond broke when they first became distanced from each other and that would be impossible to rebuild.

I found that really, really useful to think about because Carrie was as close to Saul as I was to my best friend, and they were close for a similar length of time.  Like me and my friend, they were very different people and the friendship was intense but also dependent on mutual communication.  Saul changed and moved on in a very similar way to my friend but Carrie stayed in the same emotionally intense state she’s always been in even if she’s learning to manage it more effectively now, and I think Saul just got to a point where he couldn’t tolerate it any more.  As Carrie grows, both as an officer and as person, she starts to act outside of Saul’s influence or instruction a lot more and doesn’t need his approval as much as she did in the past and Saul’s focussed on his career progression and the agency, so once they’ve split it’s really difficult for them to bond in the same way again.  I think it’s similar with my friend- we’ve both gone in very different directions over the last few years (or, more accurately, she’s moved on and I’ve stayed in the same place) and we don’t have the same sort of mutual connection any more that we had growing up.  It’s really hard to deal with and it really, really hurts but there’s nothing I can do to change that and that’s where the DBT skills come in.

It’s still hurting too much to draw any sort of line under it and I’m feeling like a mess of intense vertigo and stinging pain at the moment, but I’m hoping that I can get to the point that Carrie reached where, although there was a massive part of her that wanted to reconnect with Saul, she realised that it wasn’t possible, ‘real’ or healthy and made the decision to consciously distance herself and move on from it.  I have no idea how this will turn out and if my friend will even realise I’ve unfriended her, but I can’t do anything more and I need to distance from the whole situation.  So I’m going to try not to fixate on it or obsess over possibilities, and I want to eventually move on and accept whatever happens from here…

Obsessions

This picture came up on my Facebook feed this morning and made me smile because it’s pretty much an accurate description of my brain!  I’ve had obsessions ever since I can remember- when I was really little, it was the colour yellow (EVERYTHING had to be yellow and when I started school, I wouldn’t use a pencil unless it was yellow and my mum had to explain to the teacher that I had a fixation on yellow and that it wasn’t an issue but it would be easier for everyone if I was allowed to write with a yellow pencil) then it changed to Button Moon and Maple Town before Play Days and the Sooty Show which I can still remember episodes of vividly now at the age of nearly 30 and occasionally show kids I babysit, and at age 7 the yellow obsession changed to purple which was more socially acceptable at school and also happened to be the colour of the Unicorn Club in Sweet Valley which became a pretty major obsession from the age of 8 and is still there in the background now as is my lifelong merpeople obsession.  Over the last 20 years, my ‘major’ obsessions have ranged from Bad Girls and Disney to languages and fairy tales, David Bowie and Pink Floyd to Narnia and Harry Potter, Formula One and astronomy to Pokemon and the Sims and most of them have carried on in the background mainly as coping mechanisms, occasionally reactivating while my ‘current’ obsession is very much Homeland and Carrie Mathison in particular.

These sorts of obsessive interests are something that’s really changed who I am, how I live my life and the way I look at things in a mostly positive way, and now I think of them as ‘good’ obsessions.  I haven’t always seen them in that way- until I was in my early 20s, I hated my obsessions because they were ‘weird’ and people often commented on the intensity of them.  As a teenager, I tried to write my GCSE English coursework about Bad Girls (which wasn’t allowed), virtually lived on the Bad Girls message board which I’ve recently reactivated, watched Bad Girls DVDs incessantly, took the book with me everywhere, tried to get other people to watch it too…  My mum thought it was ‘wrong’ that I was that obsessed with a TV show and banned me from mentioning it at home, and that made it even harder.  At school, I was obsessed with languages which led to a slight idolisation of my languages teacher and I was told that that, and the fact that all my friends were several years younger than me, was “worrying”.  If I’d been born two years later, I’m pretty sure my Asperger’s diagnosis would have come a lot early than age 19 and maybe I wouldn’t have felt like such a weird obsessive freak but in the late 90s/early 00s, not many people had heard of autism and I had no idea that obsessive interests are one of the key characteristics of autistic people, along with difficulties making friends your own age, needing to stick to routines, ‘latching on’ to specific people, seeming ‘weird’ or not fitting in, getting exhausted or overwhelmed being around people, and basically everything I thought was ‘wrong’ and hated about myself growing up.  Which is one of the reasons I’m so passionate about promoting awareness of autism now!

Now, at the age of nearly 30, I actually really like and appreciate my obsessions and wouldn’t want to lose the ability to hyper-focus on specific topic, have an encyclopaedic knowledge of everything about it, and having the amazing, hyper-excitement of watching/reading about/writing about whatever it happens to be.  Thanks to the internet, I’ve been able to start a Homeland blog which people actually read even though each blog post is obsessively detailed and close to 10 000 words per post.  I’ve since expanded into twitter, instagram, Facebook and email accounts for my Carrie blog and a lot of people seem to think that I’m actually involved with the show or with the character which I’m very definitely not and keep reinforcing that but it’s so nice that people think that level of interest or obsession is a positive thing and so many people have given me lovely feedback and seem to consider me some kind of Homeland expert which is AMAZING.  If the internet had existed the way it does now when I was a teenager, my Bad Girls obsession might have been more acceptable and this sort of connection is one of the main reasons I use the internet so much.

The downside to having an obsessive-type brain is that there are also ‘bad obsessions’ which I hate more than any other aspect of any mental health issues I’ve experienced and which I’m still trying to find strategies to deal with.  These didn’t start to develop until I was in my early teens and I can remember vividly the first time I experienced it at the end of Year 8.  They range from OCD-type thoughts to paranoia and sometimes both, and nearly always involve other people.  My first experience of it was when I was 13 and went to a kids’ club during the summer.  I made ‘friends’ with one of the young leaders who was 19 at the time, and started to really look up to her.  This meant that I started be become hyperaware of everything I did/said and started to get a lot of anxiety about upsetting her or doing something wrong.  I was only in the kids’ club for two weeks but the fixation about wanting her to like me lasted about nearly six months.  I had no idea what it was and really, really hated it as well as being a bit scared of the way my brain was fixating on another person.  It wasn’t a ‘crush’- there were no romantic or sexual feelings, but I ‘needed’ her approval and that really freaked me out because I hadn’t experienced anything like that before.

That sort of fixation happened several times when I was a teenager with different people I looked up to (teachers, adults I admired, college tutors, nurses etc) and I had no idea how to manage the feelings.  It was INTENSE- like constant vertigo/anxiety and occasional palpitations if I got too affected by it, and it made me feel so guilty and physically sick.  There wasn’t any sort of physical attraction and I kind of wished there was just so it would ‘fit’ into some sort of category (a ‘crush’ would be so much more acceptable than a weird, intense ‘need you to like me’ sort of thing) but it sort of took over my life when I was a teenager to the point that that person’s approval was the most important thing in the world to me and I would do ANYTHING not to upset them.  Apparently this sort of thing is actually pretty common in people, particularly females, with ASD but since I’d never heard of autism or anything even vaguely related to that when I was a teenager, I was convinced there was something seriously wrong with my brain and that I was a weird freak who would end up as some kind of stalker when I was older.

Because I didn’t understand the obsessive thoughts and feelings, I had no idea how to manage them and they started to manifest more physically- vertigo and nausea, and almost constant shakiness.  I’m still not totally sure how it got to the stage that it did but at the beginning of Year 9, I decided (completely irrationally) that the reason I was getting these thoughts/feelings and the reason I didn’t have many friends was because I’d put on too much weight and developed too early.  I think it might partly have been because the intense obsessive feelings started around the same time I got my first period and I’d put on a lot of weight over that year (which I know now is a biological change due to developing breasts and hips), but I decided to be ‘healthy’ and lose weight in an attempt to get rid of the feelings.  So, at the beginning of Year 9, I stopped eating anything that wasn’t 100% healthy and became slightly obsessive about what I did/didn’t eat.  I can’t remember much from that time except that my mum thought I wasn’t eating enough and when I passed out at school, she made me go the GP who referred me to an eating disorders service but I never went to the appointments and I think people must have forgotten about it.

I didn’t really lose weight at that point even though I’d cut down a lot on my food intake which I can see now was because I was still growing but I thought it was because I wasn’t trying hard enough.  By Year 10, the obsessions had intensified to a point where I genuinely couldn’t deal with it much longer- it was starting to really interfere with my schoolwork and a lot of people at school, including teachers, were commenting on it and I felt like a really, really horrible person.  So I started skipping lunch at school partly because of nausea and vertigo, partly because my friends were all a lot younger than me and had a different time to go into lunch, and partly because I wanted to actually lose weight.  I realised pretty quickly that being hungry ‘overtook’ the vertigo and started to miss breakfast too.  By Year 11, I was going days without eating then being ‘made’ to eat by my mum which would lead to bingeing and vomiting, and I had the amazing realisation that vomiting was the most effective solution I’d found for ‘getting rid’ of the vertigo and nausea because it was physical and ‘forced’ the feelings out of my stomach.  They came back pretty quickly afterwards but during the binge/purge itself, there was a brief escape which I started to get dependent on.  After GCSEs, my mum made me go back to the GP because I’d started to feel dizzy a lot but I didn’t tell her about the vomiting and just said I’d been tired so she did a blood test and told me I was anaemic.  That was OK for my mum so I started to take iron tablets and since I hadn’t really lost weight at all, she didn’t comment on my eating habits.

That cycle carried on for the whole of Year 12 but by the summer, I realised that it wasn’t enough- it was helping to ‘manage’ the obsessive thoughts/feelings and stop them from getting too overwhelming but I really needed to actually get rid of them.  They’d spread to friendships by that point and I’d lost several close friends by being too intense/clingy or getting paranoid that they weren’t talking to me and over-texting, and I was finding it so hard to deal with.  I also had A levels coming up and I hadn’t done as well in my GCSEs and AS levels as I knew I could have done because about 80% of my brain was taken up with obsessive or paranoid thoughts, and I knew I needed to do something about it.  The bingeing was OK but it was only a temporary relief and I’d stopped getting hungry when I missed breakfast and lunch.  So, in Year 13, I decided that I was going to try to ‘take control’ of my body and try to get rid of the vertigo/nausea completely.  I devised a ‘healthy’ plan which involved exercising several hours a day, not eating anything that might trigger a binge (because I was aware that you retain about 70% of the calories from a binge and I knew that might be a reason the vertigo came back), and eating less than 800 calories a day spread out during the day to try to speed up my metabolism.

At first, I still didn’t lose weight and the vertigo/nausea continued but after a couple of months, I noticed that I’d started to get hungry again which again overrode the vertigo.  I got really excited about that and reduced my calories to 500 a day, and finally started to lose weight.  Amazingly once I’d lost just over a stone, the vertigo and obsessive thoughts disappeared completely and I just felt numb and slightly zoned out which was like euphoria compared to the intense vertigo/nausea I’d experienced for the previous few years.  So I kept up the weight loss, reducing calories to 300 a day when I stopped getting hungry again, and by the time I did my A levels my brain was clear again and I could actually focus on revision and getting the work done.  I ended up getting a lot better A level results than I thought I would- big improvement on GCSE and AS levels, and I felt calmer and more ‘acceptable’ than I had done since primary school.  Unfortunately, the weight loss had become an issue physical health-wise and I had to go into treatment as an inpatient in an eating disorder service which kind of took over for the next few years which I won’t go into here because that’s not the point of this blog post.

The really frustrating part of all of it is that I kind of have to choose between ‘bad’ obsessions and ED thoughts and for me, the ED side is actually easier to deal with because I don’t feel like such as weird, horrible freak and it’s more ‘understandable’.  It’s also complicated by the ‘bitch in my head’ (see Inside my head… and Thinking about the Impostor Phenomenon and the Inner Critic) who approves of the ED restriction and exercise (although she hates the bingeing) and criticises me constantly for being such as weak, obsessive freak and giving in to obsessive thoughts and urges while also telling me that people hate or aren’t talking to me which makes my brain feel like it’s jammed and totally contradictory.  She shuts up when I lose enough weight which is another reason that being a low BMI feels safer.  But I know that being severely underweight isn’t a good idea for so many other reasons (osteoporosis, heart problems, impact on kids, people judging you, feeling like you’re genuinely going to die every time you get even a minor cold) and my metabolism seems to have adjusted to a low calorie intake now anyway and I gain weight if I eat more than about 600 calories in a day.

I’d love it if my brain could just have ‘good’ obsessions and never have the horrible, paranoid, vertigo-y obsessive thoughts that have led to losing nearly every close relationship I’ve ever had, but I have no idea how to have one without the other.  Another reason I don’t like being underweight is that I feel dissociated and numb most of the time which means no ‘bad’ obsessions but also no positive ones which wasn’t a problem when I was a teenager and thought the obsessions were weird anyway but now I really rely on them as a way to channel extreme emotions or distract from paranoid thoughts.  It feels like my life’s a constant distraction technique though and I always seem to be trying to manage obsessive thoughts or compulsive urges and intense vertigo or a stinging/choking sensation in my chest, and I don’t know if this is just part of having ASD or if there’s something else I can do to get rid of it.  Am currently trying to access mental health services in a new area in the hope that someone can tell me what it is and how to get rid of it, so am REALLY hoping something will help although having been accessing various services on and off for the last 16 years, I’m not overly optimistic…!

So far, the positive strategies that I’d found that do seem to have some sort of useful effect are writing (blogging and creative), DBT skills particularly the emotion regulation and distress tolerance, Harry Potter skills (see Mental Health Awareness Week 2016, Part One: HARRY POTTER and Occlumency), some aspects of ACT like being compassionate to or ‘accepting’ the bitch in my head and trying to acknowledge what she says without actually believing it, and seeing the bitch in my head as a separate ‘being’ who isn’t reflective of absolute truth or what is actually going on in my brain.  They don’t always work and some days, nothing seems to work but the thoughts and feelings are definitely less intense than they were when I was a teenager (which is definitely partly due to medication but I don’t think that’s the only reason) and I’m really hoping that I’ll come across a strategy/therapy/model that actually works completely some day…  Any input welcome!!

Why I really need to start running properly again!

Over the last few months, I’ve really got out of the habit of running every day which is something I definitely need to change.  It’s partly because of feeling rubbish and unmotivated and general ‘can’t-be-botheredness’, partly because I’m feeling exhausted and drained all the time, and partly because (to be honest) I’m just really lazy at the moment and it takes enough psyching up to actually go out of my bedroom and go to work let alone go for a run!  But I think that really isn’t helping my mood either and I’m pretty sure it’s a cycle that’s going to keep repeating unless I actually do something about it…

This weekend was the first Ultra Festival organised by an awesome ultra runner called Andy Nuttall, and it was basically a chance for lots of ultra runners to meet, discuss ultrarunning and listen to talks by experienced ultra runners.  I really, really wanted to go and booked tickets but when it came to Friday night and actually driving to Bristol, I got really anxious about it and talked myself out of going because I was scared of camping on my own, the cold and spending a weekend with people I don’t know.  I felt really bad about that yesterday and had a pretty shitty day (see yesterday’s post Opposite Action in action- more DBT!), and decided last night that I would set my alarm for really early this morning and drive down for the day.

When my alarm went off at 6am, I was exhausted and really didn’t want to get up which really isn’t like me (I’m usually awake at 4/5am and NEVER sleep in).  I was so, so close to going back to sleep but I forced myself to get up and have a coffee, reminding myself that I could always go back to bed afterwards.  I spent the next 30 minutes arguing with the slightly paranoid part of my brain which was telling me that it was too far to drive for one day and I’d probably have an accident on the motorway, I’m not a ‘real’ ultra runner anyway and people would wonder why I was there or laugh at me, I’d be totally wiped out for college tomorrow and probably get into trouble for being rubbish at my job…  Then I saw some posts on Facebook about the event and felt really jealous of people there and annoyed with myself, so I took that as an opportunity to make myself get in the car and start driving.  Unfortunately that meant I completely forgot to take water or diet Coke but I rationalised that I could always stop and get some on the way.

The drive down was weirdly OK- no major panics, not much traffic and found the Ultra Festival OK.  When I arrived, I was so, so nervous and really close to driving back home again but then I saw Mimi Anderson who is an amazing, amazing ultra runner who I’ve been following online for the last few years and who is my running inspiration and semi-idol, and I suddenly went all fangirl-y and nervous for a totally different reason.  So I got out the car and kind of hung about watching people because I had no idea where to go.  Then, AMAZINGLY, Mimi came up to me and introduced herself, and she recognised me from Facebook!!  It felt SO WEIRD to be actually talking to someone I really look up to but she was so lovely and showed me where to go, then introduced me to a few people which was so nice of her.  Everyone was lovely and really, really friendly which made it a lot easier although I was still very shaky and terrified.  But I could speak!  Usually when I’m that nervous, my throat seizes up and I can’t say anything but people were so nice and accepting that amazingly that didn’t happen.

The talks were incredible!  There was a really interesting one about the biomechanics of running and running form which I found really useful because I’ve never actually thought about my running form before- I just run.  Then Sarah Morwood did an amazing and really inspirational talk about injury and recovering from that, and how to deal with it.  She gave a lot of really good advice about taking things slowly, focussing on small achievements, finding other outlets like drawing or blogging, and lots of other really useful advice.  I was talking to her afterwards and she is so, so nice and friendly.  She was one of the easiest people to talk to I’ve ever met and was so nice to meet her- thanks Sarah, made the ‘lunch’ part of the day so much less scary!

Then James Adams did an equally interesting talk about his running career and various amazing races he’s done via ten things he’s learned from ultrarunning.  They were all really useful and humourous, and I especially loved the ‘Be More Zebra’ one which (apart from a slightly traumatic photo of a lion attacking a zebra) was really useful not just for running.  He said that zebras are the least stressed animal in the world as they’ve been measured to have the lowest level of cortisol even though they’re constantly in danger of being attacked because they only focus on the present moment and don’t worry about things they can’t control.  That links a lot to DBT mindfulness skills (thought defusion, observing thoughts without fixating on them etc) and is definitely something I really need to work on.  So thanks for the new mantra James, I will definitely try to ‘Be More Zebra’…!

After James’ talk, Mimi gave an incredibly inspirational talk about her INCREDIBLE adventures, world record attempts (and successes) and frankly mind-blowing races she’s done in every condition from Arctic ice roads to the Peruvian jungle.  I came across Mimi’s blog a few years ago and was completely blown away by the incredible events she’s taken part in- the woman is superwoman!!  And she didn’t even start running until she was 36 which is pretty incredible and so inspirational to people like me who really weren’t runners or into sports at all at school.  I’ve used her as inspiration on so many runs before- when my brain starts telling me I’m rubbish, I haven’t looked after my body well enough to do long runs, I’m selfish etc, I think about the amazing things Mimi’s achieved and try to channel at least some of that.  It was so interesting to hear her talk about starting running and how her mindset was ‘if other people can do it, why can’t I?’ which is definitely how I try to think of ultras, and I find it incredible that she managed to run the Marathon des Sables having only run a half marathon before!  AWESOME woman.

The whole day was amazing and really reminded me why I love running, and why I really need to start running properly again- it’s the freedom of it, the amazing feeling of oneness and connection with yourself and with the world around you, the ultrarunning community, the amazingness of pushing your body to its limits AND REALISING YOU CAN.  There were people there who had run multi day events of hundreds of miles, had pushed through any limits, and who were so amazingly inspirational.  And, to paraphrase Mimi, if they can do it why can’t I?  Feeling rubbish really isn’t an excuse and I know that in reality, running would probably make me feel more real and help to get rid of the pretty much constant vertigo and vacuumness that comes with feeling low and not doing enough to get rid of it.  So, I REALLY need to start training for the 100 mile race I’ve signed up for in July… 🙂

Thanks so much Andy for organising it and thanks to everyone who gave talks, and to the people who chatted in between talks- you are all amazing people!!  DEFINITELY coming again next year for the whole thing… 😀

Opposite Action in action- more DBT!

Had a bit of a rubbish day today :/ not for any particular reason, just been feeling rubbish and vertigo-y again and I’ve had a weird feeling in my chest that I can’t seem to shift at the moment- it’s like a stinging mass in my chest and towards the back of my throat, and it feels almost like it’s choking me or making me want to cry all the time but I can’t actually cry.  No idea what it is!  Some days it’s stronger than others and today it’s been particularly bad.

I think it’s partly because I wrote a blog post about relationships over the last few days and even though I deliberately avoided talking about the recent loss of a very close friendship, I’ve been thinking about it more again and the horrible, punched-in-the-stomach feelings from that have re-emerged which really hasn’t helped.  I’ve had a really busy and emotionally draining week anyway- I went to stay with my best friend for a few days which was amazing but my energy and motivation levels are a bit non-existent at the moment and it completely wiped me out, then I had a job interview which didn’t go great and I felt completely zoned and exhausted afterwards.  I was meant to go a running festival this weekend but I couldn’t get the energy to actually go and the thought of driving there and camping without knowing anyone made me feel really, really anxious and I somehow managed to convince myself that I would die of hypothermia if I went which is obviously completely irrational but that’s what I thought at the time.  I feel really guilty and stupid for not going, and I think that’s partly why I’m feeling so rubbish today.  HATE being such a wimp sometimes!

Anyway, I decided to consciously use DBT skills today to try to cope with feeling vertigo-y and like my insides were being pulled out, which didn’t completely help but I’ve made it to almost bedtime without any major crises or obsessive messaging either my ex-best friend or current best friend which is definitely a positive!  I’m realising that, at the moment, avoiding unhelpful behaviours is an achievement in itself even if I’m still feeling rubbish or having obsessive thoughts by the end of the day and DBT says that changing behaviours should ultimately affect how you think and feel so I’m trying to keep reminding myself of that at the moment…

FullSizeRender 2.jpgThe first DBT skill I tried was distraction techniques.  I’ve got a ‘coping card’ which has ideas for things to do to manage intense emotions and although I didn’t know exactly what the horrible vertigo-y feeling was, I went with ‘low or zoned out’ and tried some of the ideas…  Cuddling my cat did actually help a bit especially as I haven’t seen her in nearly a week and I think we both had a sudden overload of oxytocin which was really, really nice but unfortunately my cat is really timid and doesn’t like too much attention so she ran off and wouldn’t let me near her after about ten minutes.  Then I had a bit of an energy crash and fell asleep on the sofa which again was good because it switched off from horrible, starting to get paranoid thoughts but when I woke up, I felt really vertigo-y and guilty again and ended up bingeing which made me feel temporarily better (throwing up does actually help with the physical vertigo-y feeling in my stomach) but then I felt even worse afterwards.  So I went on the cross trainer but it was a bit of a compulsive ‘need’ to rather than actually being useful and I felt slightly dissociated and horrible again after that.

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I’d realised by then that the distraction techniques weren’t really enough so I went back home (I’d been at my parents’ house which is one of my binge triggers) and got my DBT book out again.  I’ve found opposite action really useful before so I tried to work through what I was thinking and urges to see if I could make any sense of it.  It was hard because I was still feeling zoned out and out of sync with my body, but I was getting stronger urges to contact my ex-best friend again which I can’t do because she’s specifically asked me not to, and a lot of the feeling rubbish was connected to that.  I realised I hadn’t watched the first few seasons of Bad Girls since we’d ‘broken up’ (friendship-wise) because we used to watch it together and it was a really big part of my teenage years, and there’s a Bad Girls convention this year which I really want to go to but I don’t know if I’ll be able to manage the emotional intensity of it, so I decided to watch season three of Bad Girls which was/is my favourite season to see if it would help.

It was WEIRD.  Mega, mega intense emotions, still vertigo and feeling guilty but the intense feelings I used to get watching Bad Girls (excitement, borderline euphoria, connection) also kicked it and I was literally shaking, heart racing and actually crying while I was watching it.  I started colouring as well to try to calm down a bit but the BG-related emotions were helping to displace the vertigo and watching it really did seem to have been a good thing to do.  I only let myself watch four episodes (I could easily watch the whole season) then forced myself to go for a run to continue with the ‘opposite action’ techniques.  I really, really didn’t feel like running and was forcing my feet to move but I managed six miles and started to feel a bit more ‘real’ which was definitely a good thing.

After the run, I felt OK for about half an hour and talked to my housemate about completely mundane things which was nice and definitely helped to feel more ‘real’.  But the vertigo started to kick in again and I really, really wanted to look at my ex-friend’s FB page and maybe message her, and the thoughts were getting really persistent.  I did half-consider acting on it but I know rationally that that’s probably the worst thing I could do, and I started to feel really shaky and anxious about it.  I did go on her FB page which I know I shouldn’t have done and I felt really guilty.  DBT skills had kind of gone out the window by then and I put Bad Girls back on in an attempt to completely distract.

Acting opposite really didn’t feel possible any more and my brain had turned to obsessive fuzz, and I went back to a coping strategy I’ve used since I was a teenager- playing Sims.  It’s weird but it really does work and I made my Sim hang out with the Sim of my old best friend which I know isn’t the best way to deal with it and move on but it did really help to manage the obsessive urges to contact her because it really does feel like you’re spending time with the other person.  After a while, the urges had calmed down a bit and I felt a lot like when I was a weird, obsessive 14 year old again.  Using the Sims like that is definitely a last resort but it really does work when I’m in an intense, obsessive state and I think it’s more important to manage that it a not-destructive way even if it isn’t massively constructive.  After I came off the Sims, I was still feeling very vertigo-y and like I’d been punched in the stomach, and still had some urges to contact my friend but I wrote a letter to my old university tutor (who I got on really well with) instead and that actually really helped because I miss seeing her and it helped to channel some of the ‘need to contact’ urges.

So, amazingly, I’ve actually managed to make it to bedtime without contacting my friend!  I did message another friend maybe a bit too much as a way of distracting but I don’t think she minded and although I know it’s still something I need to work on, it’s a LOT better than it has been and considering how horrible I’ve felt for most of the day, one binge really isn’t too bad and I’ve eaten at least one ‘real’ meal which is again better than I’ve done before after bingeing.  And I went for a run (even if I didn’t enjoy it), and I haven’t fallen asleep since the relatively short nap this morning so I’m counting it as a positive day even if I’ve been feeling rubbish.  I think it really was triggered by writing about relationships yesterday and need to be more aware of that for next time, especially if I’m already emotionally knackered.  Learning curve!