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!

Even more thoughts about ED recovery!

[Obvious trigger warning: this post is about eating disorders and has a lot of honesty that might be triggering for people experiencing EDs, even if you are recovered.]

I was talking to a friend a few days ago and she said that I was doing really well with eating regularly and being a healthy weight, which I know is a positive. But she also said that I don’t have an eating disorder any more which for some reason really upset me and I wasn’t really sure why- I know it’s a good thing, I don’t want to be seen as having an eating disorder or be defined by it, I want to be healthy and I REALLY want to have a baby but it still made me feel really weird and upset. Which got me thinking even more about what eating disorder recovery actually is and what it means. I’ve written some posts about this before (Thoughts about ED recovery and (More) thoughts about ED recovery) but I’m realising more and more about it the further into recovery I get.

I know that recovering from an eating disorder is much more than just gaining weight and eating three meals a day- if that’s all it was, I’d have recovered every time I was an inpatient! But I’m still not totally sure what it actually means. I still have a very strong ED ‘voice’ in my head all the time, I get anxious every time I eat or am near food that’s high in calories (which is a challenge since I’m currently working in a pub!) and I eat the same foods every day but I don’t act on the ED thoughts or urges- I don’t skip meals (unless I’m in a situation where it’s physically impossible such as in the middle of a shift at work), I don’t binge or purge any more, I eat even when I feel so anxious my stomach is churning and I feel physically sick, I’m even drinking bloody Fortijuce because I need a certain amount of calories to absorb one of the medications I take. So on a surface level, maybe I am ‘recovered’. But that thought genuinely terrifies me and it’s taken a lot of thinking, honesty and admitting things I’d rather not to work out why. Which is what this blog post is about, and PLEASE don’t judge me!!

I know it’s not possible to recover from an eating disorder and still have one- the two are mutually exclusive. But it IS possible to both want to recover and still (secretly) want to have an eating disorder and I think it’s a lot more common than most people realise. I want recovery- really. I want to be ‘normal’, I want children, I want to be able to eat naturally and in front of people, not feel anxious around food, not think about food every bloody minute, be able to eat out or at friend’s houses, even have a normal Christmas dinner. But the idea of not having an eating disorder honestly is so scary and I think it’s even more scary than the idea of living with one for the rest of my life. I’ve been thinking about it a lot over the last couple of days and I think there are a few main reasons which I’ll go into more detail about- the fact that I’ve had an ED for 20 years which is nearly two thirds of my life so the idea of change is really scary; the idea that the ED keeps me ‘safe’, less selfish, greedy or lazy; feeling ‘in control’, less chaotic and being able to manage emotions better; and the hardest one to admit- losing an ‘identity’ or something that is actually a big part of who you are.

The first and most obvious reason is that I’ve had an ED for most of my life and I can’t actually remember a time when I DIDN’T have a critical voice in my head telling me that I was fat, selfish, greedy or lazy and commenting on what I ate. Even before the idea of an eating disorder was first mentioned by a doctor when I was 13, I knew I was fat and that was why I was selfish, didn’t have any friends and messed things up all the time. The first time I remember consciously thinking that was when I was in Year 3 and tried to hold my stomach in for school photos, in Year 4 we had to weigh ourselves in a maths lesson to plot on a graph and I lied about my weight because I thought it was too high, in Year 5 I was embarrassed about having boobs and needing a crop top so I refused to wear one even though my chest hurt and rubbed against my school shirt, in Year 6 I made my mum buy an age 9-10 top for the leavers’ disco even though it stretched over my chest because I didn’t want to get age 11-12 when I wasn’t 12. I can’t remember ever eating food without feeling guilty about it although I must have when I was really little, and the idea of being able to eat without feeling anxious or guilty is weird and scary and doesn’t even really seem possible. And I’m scared of change which is another factor that makes the idea of recovery even more scary- the thought of change makes me feel shaky and like my stomach has dropped out, even though I know that you need to change to grow and move on. I think autism doesn’t help with this- with ASD, you get ‘stuck’ in patterns and behaviours that feel safe and make the world less chaotic, and it feels impossible to change. But I also know that is IS possible to change and that the world doesn’t end or even feel that different if you break it down and do it step by step. It’s not true that making the first step that is the hardest; they’re all equally hard but really, really worth it.

One of the biggest fears I have about ‘recovering’ from ED is the idea that without it, I’m fat, selfish, greedy and lazy and it’s the eating disorder that stops this from taking over. And it’s hard because it genuinely does- if I’m not eating much food, I can’t be greedy; if I’m exercising every day, I can’t be lazy; if my weight is low, I can’t be fat. But having an eating disorder DOES NOT make you any less selfish and actually makes it worse- you focus totally on yourself and what you are/aren’t eating, when you’re a low weight people worry about you which is incredibly selfish, and it’s hard to focus on other people when you’re constantly worrying about food or feeling guilty. But it’s also hard to fully believe that when you’ve got a ‘voice’ in your head telling you the opposite, the only way to stop being selfish is to lose weight and take up less space (physically and emotionally), the reason you’re lazy and greedy is because you’re fat and losing weight will make everything better… SO BLOODY HARD to work out what is real!!

The next reason, which links to the last one, is that the ED helps you to feel more in control and manage emotions better. This is hard to argue against because in a lot of ways, it does- restricting food and/or losing weight really does ‘blunt’ or even get rid of extreme emotions (at least until your body adapts and it doesn’t work any more), and for years this stopped me from wanting to even try to recover from ED. But after about 15 years of food restriction, it didn’t seem to work any more and I was experiencing extreme emotions, mood changes and obsessions at the same intensity even when I lost a lot of weight or severely restricted food intake again. But there’s still the voice in my head telling me that next time it will work, I just didn’t lose enough weight, I can get back in control of my emotions and especially obsessions without needing multiple drugs and that all I need to do is lose more weight. It’s so hard to fight against all the time and it’s exhausting. And I want it to be true so, so badly!! But rationally I know it’s not- I have BPD and the only way to actually (and consistently) manage and control extreme emotions and obsessions is to find the right balance of medication and be able to access psychological support and especially dialectical behaviour therapy which you can’t do if you’re not eating consistently.

The last reason is both the hardest to admit and the most complicated to explain- that not having an eating disorder is like losing a big part of your identity. I’ve had an ED for 20 years which is nearly two thirds of my life, and it’s unfortunately a big part of who I am which I’m really, really scared to lose. I’m not saying that I like having an eating disorder or that I want it- I don’t, and I genuinely hate the shitty part of my brain that tells me constantly how fat, lazy, greedy and selfish I am for even thinking about recovery but I am scared to ‘not’ have it if that makes sense. Which I’m sure it doesn’t so will try to explain! When I was first diagnosed with an eating disorder, I was really, really ashamed of it and didn’t want anyone to know. When I was in hospital, I only told one friend where I was and told my parents not to tell anyone although I’m guessing quite a few people knew by then and especially as I was in hospital over the next two years. I don’t like people associating me with having an eating disorder and outwardly, I really DON’T want it to be part of my identity.

But inwardly, it really, really is and I’m scared of losing that. I don’t think the voice will ever go away but I don’t listen to it as much any more and I definitely don’t act on it so I suppose outwardly, it does seem like I’m ‘recovered’. But does that mean I have to eat like everyone else? Do I need to eat fat? Do I have to eat different foods every day, eat ‘impulsively’, not stick to a meal plan and timings, have snacks and actually WANT to eat? Because all of those things terrify me, more than losing so much weight I need to go into hospital again or making my already rubbish bone density, teeth or heart rate worse. I don’t want to be ‘ill’ or be seen as having an eating disorder but at the same time, I’m scared of not having one because it means confronting all of the fears that have been a part of me for so long and changing so much of what makes me ‘safe’. But I want to be able to have a baby, be a ‘normal’ adult, experience sexual attraction and actually have an identity that is ‘me’ and not eating disordered or ‘ill’. And I know you can’t really have both, and that’s what I’m scared and confused about. And maybe this is all part of ‘recovery’, which I’m still not really sure what it actually is!

I know this blog post might read a bit negative and I honestly don’t want it to. I’m just a bit conflicted about the whole concept of recovery at the moment- lockdown threw everything into a bit of confusion and although I ‘saw’ a really, really helpful psychologist over lockdown who helped me get back into a regular meal plan and different foods each meal, I’m still feeling a bit overwhelmed by all of it especially as I’m taking a new medication which requires a minimum amount of calories to be absorbed! But I think the fact that I’m still trying SO BLOODY HARD and I really, really want to work it out and ‘get better’ means that I probably do want recovery, once I figure out what it actually is… Just so confusing and hard to get your head around!

Thoughts on social distancing and isolation

I’m so sorry I haven’t written in so long; I took the blog offline for a while because I got a bit paranoid about people reading it and became completely convinced people I knew were reading it even though I hadn’t shared it with them.  I’ve since changed the domain name and *hopefully* if anyone was, then they won’t be able to find it now but I don’t know how they would have found it anyway and tbh, it was probably just me being over-paranoid anyway!

SO…back to blogging.  I’ve really missed it; it’s one of the only ways I can try to actually make sense of my brain in a way that other people can understand and maybe relate to, and I miss that connection.  Which is especially true now we’re in the middle of social distancing and self isolation!  It’s a weird and disconcerting time for everyone and I’m swinging between being kind of relieved that for once it’s not just me feeling lonely, anxious and guilty all the time but then feeling really guilty for thinking that and just generally overwhelmed by the whole situation- again, like most of the world!

It’s weird that in one sense, not much has really changed- I was signed off work for two weeks before lockdown started anyway and it’s not like I had a particularly active social life (or even one at all).  But I had school and it was the hope of going back to school that had kept me going while I was signed off, and the idea of schools closing before I could go back felt really horrible and disorientating.  I know that a massive proportion of the country are feeling similar with schools closed and exams cancelled, teachers are feeling disorientated and kids are stuck without the structure of school, and for many Year 11s and Year 13s, they didn’t even get a chance to ‘leave’ school properly.  So in the context of that, how I’m feeling really doesn’t even compare to how a lot of people will be feeling at the moment but for me, it was the loss of hope and possibility of structure, purpose and social contact that really got to me the most.  And it’s still so, so hard to deal with.  I’ve set up a website of fun activities, quizzes and puzzles for kids off school to try to keep them entertained and I’m updating it every day but it still doesn’t feel ‘real’ or like there’s any actual point to it.  Trying to focus on it as a distraction and purpose but it’s hard when I don’t know if any kids are actually using it!  It’s Purple Jedi Activities if anyone’s interested ūüôā

It’s hard to work out what’s going on at the moment because before coronavirus took over the news and lockdown started, I was already having issues with medication, mood swings, anxiety and paranoia and the current situation really hasn’t helped.  It’s been going on for months- I started to feel rubbish again just before Christmas and it got progressively worse up till February when I kind of hit a massive low and just felt horrible, guilty and lonely all the time but so much that it hurt.  I had a couple of overdose attempts (which I’m rubbish at anyway- both times I panicked afterwards, tried to throw up, felt ill later and went to A+E) and have been having a lot of issues with mental health services recently because I “make people anxious” and it’s a “barrier to treatment” but I honestly don’t mean to and it’s making me feel so shit and trapped.  Long story; I ended up increasing medication to the point when I felt genuinely stoned and spun out all the time which wasn’t safe, was signed off work and have been trying to get the right balance of medication since then.  Currently on a mix of vortioxetine, quetiapine, pregabalin, lorazepam and zopiclone and trying to find the right amounts of each one so that I’m not too hyped, panicky or suicidal but can also function relatively OK day-to-day.  Really tough!!

But anyway, that’s just background :/ I think even without the Covid-19 situation, I’d be a bit all over the place atm but now it’s like the world has honestly gone nuts.  And for once it’s not just me!  It’s crazy to realise it’s a global issue and that the majority of the world is feeling scared, overwhelmed and anxious atm which is weirdly reassuring as well as a bit scary in itself.  For me, the hardest parts are the lack of structure which leads to feeling chaotic, ‘vertigo-y’ and like there’s no point, and the isolation which leads to intense loneliness and feeling cut off from everything.

One of the things I really struggle with is the idea that people will totally forget I exist if they don’t see me, and it’s so so hard not to keep contacting people I care about all the time to check.  And it’s SO BLOODY LONELY isolating on your own and not knowing when you can see a real person again.  I’m not a physical contact-type person but right now, I could really, really use a hug and I need it so much it actually hurts- my whole body is physically aching and tingling with anxiety and loneliness. And that must be a million times harder for people who are used to physical affection!

I realised recently that one of the main criteria for diagnosis of BPD is ‘fear of abandonment’ and being isolated on your own feeds into it- it really does feel like you’ve been abandoned by everyone and everything and I’m having to keep reminding myself that it’s a global situation and not just ‘me’- support groups stopped because they had to with social isolation not because they didn’t want me in the group, I’m not on the school rota v often because they’re limiting staff in school not because they don’t want me in, people aren’t messaging back because they’re overwhelmed and scared like everyone atm or busy with other things not because they hate me, social distancing was not introduced because I’m too intense and people need a break from me! I know it sounds over-dramatic, self-centred and ridiculous (which it is) and I know that rationally but it feeds into the main idea that people just don’t want you around which still really hurts and makes you feel rubbish.

One of the other criteria for BPD is ‘chronic feelings of emptiness’ which I’ve always referred to as ‘vertigo’ and it’s so, so intense at the moment without any real purpose or connection.  For me, that’s the part that leads to pretty much constant suicidal thoughts because there really is no point and I’m so scared people I’m close to will forget about me, and it’s so hard to manage.  But I can’t act on any of it atm anyway because I don’t want to put any extra pressure on the NHS by having to go to A+E so feeling really trapped and rubbish.  Which I’m trying to channel into more positive distraction but is leading to a lot of negative behaviours which I hate but tbh if it means I’m not overdosing or ending up in A+E then it’s not the end of the world.

The other overwhelming feeling atm is guilt.  Which tbh isn’t just atm- I feel guilty A LOT of the time anyway but it’s constant now and literally taking over most other feelings.  Part of it is justified- I know I can be too intense and needy and although I really try to manage it and not keep contacting people, I am still ‘too much’ when I talk to people because I honestly am feeling so horrible so much of the time and it’s hard not to let that show.  But I keep apologising and trying to let people have the choice if they let me contact them or not, but I still feel shit for being like this in the first place.  I really am trying to change it- I’m doing a lot of online courses in Food and Nutrition, Health and Social Care and some self-help courses for BPD which challenge viewpoints and behaviours but it seems to be taking a really long time to see any change at all which is frustrating and I just wanted to be a nicer, less draining person.  But at least one positive to social distancing is that people don’t have to put up with me in person any more!

One of the other issues I’m finding hard (and links to guilt) is feeling like everything is my fault.  This is something I’m challenging a lot atm- I know rationally that I am not all-powerful and I definitely didn’t start coronavirus or create the crisis that the world is in at the moment, but I still feel really, really guilty that people are dying all over the world and it feels like I should be doing more to stop it.  I’ve signed up for NHS volunteers and for social care volunteering but haven’t heard back yet, and I’m aware I’m a drain on NHS resources even without Covid-19 pressure which makes me feel really guilty.  I’ve been in touch with CMHT, ED services and the crisis team a lot over the last few weeks because I genuinely don’t feel safe in the house on my own, partly because of intense suicidal thoughts pretty much every night, partly because of medications making me feel stoned or spun out and partly because I’m still getting occasional extreme mood swings which can make me really impulsive.  But they can’t do much atm- they’re not admitting any new inpatients because of the pandemic and all they can really suggest is to keep a mood diary, have a crisis plan and take lorazepam which I’m doing but it still doesn’t feel safe a lot of the time.  But I’m still trying!!

The last issue I’m going to talk about here is the idea of feeling chaotic, out of control and scared which for me, is a big trigger for eating disordered behaviour which I’m trying SO HARD not to fall back into atm.  It’s taken 20 years and some v direct honesty from a couple of friends to get into a ‘healthy’ eating routine and I really, really don’t want to lose that.  So I’ve literally made a timetable to structure the day around a ‘school day’ with set mealtimes which I have to stick to.  And it feels so much safer because it’s not my ‘choice’ and apart from a couple of really horrible, chaotic days, I’ve pretty much managed to stick to it.  Will share it here in case anyone else finds it useful ūüôā

 

But even though the world is chaos and scary, there have weirdly been some positive effects!  Which I’m trying to focus on and see as proof that things can change…

  1. Thanks to necessity for medical appointments, helplines and crisis calls, I can actually make and receive phone calls now without getting panicky!  Which is a HUGE thing for me.
  2. I have several friends who are amazing and some of whom put up with sometimes ridiculous texts or calls.  Several being a BIG change because before I’ve only managed to keep one or two friends at a time and now I have a few!  And I’m really trying to believe they won’t forget I exist just because I haven’t contacted them in a few days…
  3. Social media is not all paranoia and anxiety and with only close friends, can be an absolute lifeline.
  4. I can go to the supermarket only twice a week, buy more food at once without being convinced everyone will think I’m a greedy, lazy bitch and actually keep the food in the house without bingeing on all of it!!  Which, as someone who used to only be able to buy a day’s food at once, is a BIG change.  Mostly helped by my equally intense fear of germs meaning that I’m genuinely scared to go to the supermarket but I’m still taking it as a positive!
  5. I now wash my hands in a normalish way.  Which again is a big thing- I used to have to use 2-4 pumps of handwash and sometimes 2-4 more depending on if they ‘count’, and careful not to accidentally hit 13 overall so sometimes even more but now, thanks to restrictions on how much handwash you can buy, it’s 2 pumps ONLY and they both necessarily count.  And it’s amazing how much less anxiety I have now about washing my hands!
  6. I bought a weighted blanket to help with anxiety and needing a physical ‘hug’, and I’ve never slept so deeply in my life.  OK, it’s still not for very long and not always at night but it’s seriously amazing!
  7. Focussing on Jedi living is actually a lifesaver atm.  I won’t go into it too much now because I’m planning a whole post on it later on but there’s something really grounding about connecting with a Force greater than yourself and trying to really focus on quieting your mind and letting go of attachments and fear.  I know it might sound a bit weird but it honestly does really help.
  8. I have never spoken to my little cousins on FaceTime so much in my life (or ever, in fact)!  They’re all off school and bored atm and it’s so nice to connect with them, watch them play lego/do crafts/just hang out.  Living in England while they’re in Scotland means that sometimes I miss out on my little cousins growing up and it’s so nice to connect with them properly now.  Feels like I’m actually in Scotland with them!

Anyway, this post is a lot longer than I’d intended so will leave it here ūüôā REALLY hope everyone is managing OK and sending lots of hugs to anyone else self isolating on their own.  It really is hard and can feel like it’s never going to end but IT WILL and reach out to as many people as you can ‚̧

10 in 10 Day Five- halfway through!!

Five marathons down and halfway through!! ¬†Today was a bit of a weird one- after yesterday, I didn’t sleep brilliantly last night and wasn’t in a great mood when I woke up but I noticed on Facebook that it was a purple medal day and purple’s my favourite colour so made an effort to wear all purple (not too difficult given that 90% of my stuff is purple anyway plus I have purple hair and nails!) which definitely helped put me in a more positive frame of mind. ¬†Wish everything was that simple!

I hadn’t had much to eat last night because of feeling rubbish and I was genuinely hungry this morning so I added cornflakes to my porridge (weird I know but it doesn’t seem as much as having extra porridge) and had some hot soya milk as well as coffee. ¬†I actually felt reasonably with it at the start of the run which was nice considering how horrible the last two days have been and once the run started, I seemed to have a surprising amount of energy.

The first couple of laps went pretty quickly; I was listening to Pink Floyd’s Dark Side of the Moon and The Division Bell, and the extra food for breakfast really did seem to have helped. ¬†By lap three, my mood had started to drop again and was having a lot of pretty unhelpful thoughts about eating extra and not needing it, not trying hard enough etc but I kept running and tried to build up enough time so that I could ease off in the second half. ¬†I stuck to the cereal bar strategy again which *touch wood* seems to be working OK, and ran most of the race pretty much on autopilot.

The weirdest thing was that I didn’t really feel sore or overly exhausted which is strange considering it’s day five and days three and four were really tough. ¬†Physically, I felt the best I have done all week although mentally my brain was all over the place and that was harder to manage. ¬†By lap six, I’d switched to Harry Potter audiobooks which is my go-to brain numbing strategy and that really seemed to help. ¬†I walked most of the last two laps but I’d got enough time to be able to, and I was surprised at how the run seemed relatively OK compared to the last couple of days. ¬†Big relief and really hoping it lasts!!

It was really, really hot and I realised after the run how dehydrated I must have been- mega headache and felt so thirsty even though I’d been drinking squash all day so I walked to Morrisons and got some diet Irn Bru which was the most amazing thing ever!! Had a salad and cooked chicken for tea which didn’t seem like too much for once (I hate admitting it but I am actually starting to get hungry) and some melon which was equally amazing. ¬†Am absolutely exhausted now though and a bit over-emotional so planning an early night and hopefully sleep… ¬†Five down, five to go!

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 ūüôā

Yet another apology post!

Hi guys, just another apology post for not writing much recently! Not been feeling great and been a bit dissociated a lot of the time which hasn’t helped ūüė¶ back to work next week though which I’m REALLY hoping will help…

Got a few blog posts which I’m halfway through writing though so will hopefully post properly again soon. I attempted a run across Scotland which was really tough and had to withdraw partway through so trying to write about that, and been doing a lot of thinking about ED, recovery and what it actually is (kind of following from the post I wrote last year¬†Thoughts about ED recovery¬†but probably more confused by now!) so also trying to make enough sense of it to write about that too. ¬†Fingers crossed I‚Äôll have a proper post written soon and thanks so much to anyone still reading this blog!

Of Mice and Men- thoughts and reflections

Sorry for not keeping up with massively regular blog posts ūüė¶ been feeling v negative and rubbish over the last couple of weeks and haven’t had anything particularly positive to write about, and since this is meant to be a constructive (and honest) recovery blog there didn’t seem much point in writing about feeling horrible and down. ¬†It’s nothing major, just end of term rubbishness and a build up of feeling lonely and negative which I’m definitely working on but taking more time than I’d hoped.

I know this is going to seem like a bit of a random blog post but we’ve been reading Of Mice and Men with Year 9 at school over the last couple of months and I’ve found it really hard to read and talk about with the kids, and it’s got to the point where I feel rubbish for the rest of the day every time I’m in Year 9 English so I wanted to try to think more about it and process it so that next time we do it in class (this time next year), it hopefully won’t be as much of an issue. ¬†Plus I think it’s been adding to the general feeling rubbish recently which I really don’t like so want to try to work out why and how I can manage that better given that it really is just a fictional book! ¬†Quick disclaimer: I am going to talk about the whole book so spoiler alert if you haven’t read it and MASSIVE trigger alert for anyone affected by learning difficulties, autism or emotion regulation issues.

I read it for the first time last year when we studied it in class with the kids. ¬†It’s an easyish story to follow- set in 1930s America, there are two main characters called George and Lennie who work on a ranch to try to save enough money to get their own farm. ¬†George is a sharp, smart man whose ultimate goal is to own his own farm and live off the land and his friend/travelling companion Lennie who has a type of learning disability (it’s never really explained) and who is absolutely, 100% loyal and devoted to George. ¬†George protects Lennie; Lennie would do anything for George. ¬†But Lennie also finds it hard to recognise, manage and control his own emotions which is ultimately what gets him into trouble even though he doesn’t recognise it at the time. ¬†At the end of the book, Lennie gets into so much trouble that he is going to be lynched by the men on the ranch so George shoots him in the back of the head (without him realising) as an act of kindness and to save him from a much more painful death.

When we read it last year, there were lots of bits of the book that got to me- Lennie accidentally killing small animals by petting them too hard (made me feel really guilty), Candy’s dog getting shot because he was old, Lennie being left out because he didn’t have the same ‘urges’ as the other men (they go into town to play cards, drink and pick up women leaving Lennie behind), Lennie hurting Curley without meaning to because Curley provoked him and building up to the end of the book which is genuinely traumatic to read and makes me feel like someone’s physically punched me in the stomach and is twisting my insides into vertigo. ¬†Even though I know what’s coming, it’s still a visceral feeling and makes me shake and my eyes sting, and it’s hard not to cry even though I know I can’t in front of a class of 14 year olds.

In the last couple of scenes, Lennie is approached by Curley’s wife who is a seductive, lonely woman and who invites Lennie to stroke her hair. ¬†Lennie likes soft things and strokes it. ¬†I can’t remember all the details because I avoid reading this part of the book as much as possible (one teacher I work with is amazing and always warns me when we’re reading this part of the book so I can do work somewhere else for that lesson) but basically she shouts at him to stop, Lennie panics and holds tighter, he tries to stop her shouting but she’s trying to get away and he accidentally breaks her neck. ¬†Then he runs and hides in the brush (near the river) because that’s where George told him to hide and wait if he got into trouble. ¬†George hears about what has happened and goes to find Lennie. ¬†He knows that if the men on the ranch find him first, they will rip him to pieces so he makes the decision to shoot Lennie himself in a humane way so that Lennie won’t suffer or even know anything about it.

Last year, the bit that got to me the most was Lennie accidentally killing Curley’s wife- he genuinely didn’t mean to and he was actually trying to AVOID trouble at the time. ¬†He told her repeatedly to leave him alone and that he wasn’t meant to be talking to her but she kept on talking to him, and finally he lost control completely which really, really wasn’t his fault. ¬†It’s hard when you know that a situation isn’t safe and you need to escape but you can’t- it’s a horrible feeling and the more trapped you feel, the worse it gets and something builds up inside you until eventually you ‘snap’ and can’t control it any more, and it really is like an ‘animal’ urge takes over. ¬†I used to get like that a lot when I had more regular meltdowns and it really is horrible- you don’t really remember much about the actual experience but it’s horrible and exhausting. ¬†All I know is that I’m suddenly screaming, sweating massively, crying, pulling my hair out, banging my head against the door/cupboard/floor, biting or scratching myself or ANYTHING to try to get rid of the crazy intense emotion that seems to have taken over completely.

The only way to get rid of it is for the other person to leave you alone completely but that hardly ever happens and it’s genuinely horrible because you can’t speak or express anything coherently, and you know you’re acting totally irrationally but nothing seems to make sense. ¬†Thankfully I don’t experience it much any more but it still happens occasionally and I really, really hate it. ¬†That’s how I’m guessing Lennie felt at the time when he accidentally killed Curley’s wife, and the really horrible thing is that I can imagine how easily it could happen- I’m a 5 foot 4 relatively small woman who’s not that strong but Lennie in the book is described as massive and very strong, so I can see completely how easy it would have been for that to happen if he felt trapped and panicky. ¬†And I also know how horrible and guilty I feel after having a meltdown and that must have been multiplied a million times for Lennie, especially as he’s worried he’s going to lose his only friend who means more to him than absolutely anything else. ¬†So it’s a really, really horrible part of the book to read.

Weirdly when we read it this time, it was actually the next scene that got to me the most. When Lennie’s waiting in the brush, he starts to hallucinate and the visions he sees and hears are horrible, negative and critical. ¬†It’s like his version of the ‘bitch in my head’ and some of the things they say are almost word for word what the bitch in my head says (and is saying on a pretty much hourly basis atm), and that was really surreal and hard to read. ¬†The line that gets to me the most and that I can’t get out of my head atm is when the giant rabbit that Lennie hallucinates keeps telling him that George is going to leave him. ¬†This is the quote from the book:

“Well, he’s sick of you,” said the rabbit. “He’s gonna beat hell outa you an’ then go away an’ leave you.”

“He won’t,” Lennie cried frantically. “He won’t do nothing like that. I know George. Me an’ him travels together.”

But the rabbit repeated softly over and over, “He gonna leave you, ya crazy bastard. He gonna leave ya all alone. He gonna leave ya, crazy bastard.”

Just typing it makes me cry and I’ve got mega vertigo even thinking about it. ¬†Because it’s so bloody true, and I know it’s not just people with learning disabilities who can relate to that. ¬†I know I’m not the easiest person in the world to be friends with- I’m too intense, clingy, overly sensitive and even though I try not to act on it, people always get fed up with me and I hardly ever manage to keep close friends because of being too ‘much’. ¬†I lost my closest friend a couple of years ago (wrote a few blog posts about it last year- see¬†Friendships and mindfulness¬†and TOO MUCH EMOTION¬†especially) and since then I’ve realised that it’s pretty much impossible to form and keep close friendships because I’m always going to lose them, which is horrible and hard to accept but it’s definitely safer to recognise and try to accept it than keep losing friendships that I’ve accidentally got too attached to. ¬†But even though I can recognise that, it doesn’t stop it hurting and definitely doesn’t stop the paranoia about it which is particularly intense atm because of losing another close relationship a few months ago, and reading Lennie’s hallucinations which basically mirror my own ‘voices’ and paranoia was a bit too intense and surreal, especially as I’m already feeling more vertigo-y and rubbish than I was this time last year.

The other part of the ending of the novel that really got to my both last year and this year is George shooting Lennie. ¬†Last year, it got to me because of the more obvious reason- however ‘kind’ the action is, Lennie is being killed because he is ‘too much’ and can’t manage his own emotions, and I could identify with that way too much. ¬†When I read it for the first time last year, it made me feel rubbish and horrible because of feeling like I wasn’t good enough, people were fed up with me and it would be better for everyone if I didn’t exist and I still had those feelings this year but it was lot more intensified and with the added complexity that reading it a year on, I actually felt almost envious of Lennie and then felt massively guilty and horrible for feeling that. ¬†It’s really hard to explain and I feel really weird and guilty for trying to put it into words, but I do feel very, very jealous that Lennie has a friend as close as George is and who is willing to put his (Lennie’s) needs above his own feelings. ¬†I hadn’t really thought about George’s perspective on it before but we had to discuss it in class and he must have felt massively conflicted and guilty for effectively having to kill his best friend and probably the only genuine human connection he has. ¬†In class, the kids had to come up with what they thought would happen next (George gets his own ranch, George meets a girl and settles with a family, George continues to work at the ranch etc) but my main thought was that George would now be totally alone and probably wouldn’t be able to deal with the guilt and loneliness, and I honestly think he’d probably use the gun on himself. ¬†Which makes the ending of the book doubly sad and horrible to process.

The hardest thoughts I have about the end of the book though are definitely the horrible jealousy about Lennie and George’s relationship, and particularly Lennie’s death. ¬†Because at the moment, I’m totally aware that I’m constantly ‘too much’ for people and the only way that seems to work to manage that (the over-emotion, mood swings and obsessiveness) is through food and weight which annoyingly also seems to end up affecting other people and there genuinely doesn’t seem to be a ‘safe’ solution. ¬†I’m not saying I’d ‘do’ anything about it because that would also be ‘too much’ and affect other people (especially given that I work with kids) but Lennie is lucky in that he has a friend who is able to see the bigger picture and act in a way that is probably the safest and most humane way for him in the long term, and saves him future suffering. ¬†Obviously I know that that isn’t a practical solution but I really hate how it feeds into negative thought spirals that are so hard to manage.

I can rationalise the thoughts and I know it’s not a practical or helpful way to think but it’s been HORRIBLE recently trying to manage this amount and this intensity of negative thoughts about it while we’ve been reading the novel and especially having to watch the film (the ending twice). ¬†There was one lesson where I was feeling particularly rubbish already and genuinely couldn’t hold in crying which was really horrible and embarrassing, but luckily only one student noticed and he didn’t make a big deal out of it. ¬†It’s still really getting to me though and I can’t get the ‘rabbit voice’ out of my head. ¬†It’s pretty much how I feel about relationships in general- I know they’re fluid and not permanent but it’s so hard to actually accept that, and sometimes it seems easier not to get close to people at all because you know they’re going to get fed up with you, but at the same time it’s horrible and lonely when you don’t have any ‘real’ people contact outside of working with kids. ¬†But also better than losing close friendships which is the worst feeling in the world so a bit of a no-win situation! ¬†Which is maybe the point of the book?

Trying to end on a positive: even though I know that friendships often don’t last, it’s something I’m trying really, really hard to work on and awareness definitely a big step towards that. DBT skills are also really, really helpful in managing interpersonal relationships and wrote about that last year in a blog post called Celebrating 400 years of Shakespeare with DBT skills– please read for more info! And will include a list of things I learned from that here because it’s definitely something I need to revisit:

1 Take every friendship at face value.  Don’t overthink it, make assumptions, have unrealistic or idealistic expectations, or make any judgements at all.  Try to take the friendship as it comes and use mindfulness or grounding techniques to manage anxiety.

2 Friendships are fluid and changing. ¬†There is no such thing as a ‚Äėbest friend‚Äô or ‚Äėforever friendship‚Äô, however amazing that would be. ¬†Enjoy the relationship when you can but don‚Äôt have any expectations that it will last forever. ¬†Practise ‚Äėbeginner‚Äôs mind‚Äô (seeing every experience¬†as the first time you‚Äôve experienced it, without any preconceptions or judgements) and don‚Äôt overthink it.

3 People change and that’s part of life.  If a friendship ends, it might not have anything to do with you whatsoever- the other person might have changed or moved on and THAT’S OK.  Growth is part of life and people move on at different rates.  That doesn’t make it any painful, but taking away the guilt or self-criticism will help you move on from it a lot more easily.

4 Be open with people.  Honesty and openness in relationships is the most important part of a healthy relationship and will reduce anxiety more than almost anything else.  Anxiety and particularly paranoia come from uncertainty and thrive in self-doubt or assumptions.  If you’ve got a gut reaction to something- check it out.  Don’t let it spiral into full-on paranoia or depression because then everything’s skewed through a fog of thoughts and judgements and you’re likely to damage the relationship without realising it.  Sounds cliched but if the other person’s worth being friends with, they’ll be honest with you.

5 TRUST.  This is one of the hardest ones for me and there’s different ways it’s relevant to friendships but the some of the key points are to trust that the friendship will still exist even if you’re not constantly contacting the other person, trust that the other person will be honest with you, and trust that the other person really does want to stay friends with you.  I find all of these really hard, especially the last one, but they’re so important and I think they get easier the more you do them…  It really relates back to the mindfulness idea and I’m trying really, really hard to use that in my current friendships.

Either way, I’m really, really glad we’ve finished reading it for this year and I don’t need to think about it for another ten months! ¬†Definitely not my favourite book but need to keep reminding myself that it was written in the 1930s and things have changed and improved A LOT since then thankfully…

Trying to make sense of my brain…again!

This is a sort of follow up post to yesterday’s¬†Back to more regular blogging!¬†and I’m going to focus more on food/weight-related issues because that’s basically what I’m trying to work on properly at the moment. ¬†Or at least that’s the aim; the whole idea is absolutely terrifying me and I’m not totally sure how or what exactly I’m trying to change or achieve, so I’m sort of trying to make sense of that too! ¬†I’ve been re-reading older blog posts about similar things (especially¬†21/05/07: probably the most significant day of my life. ¬†Reflections a decade on‚Ķ¬†which I wrote ten years to the day after I was last inpatient and I’m still feeling very similar to how I did then) which is definitely helpful to try to formulate some idea of how I’m feeling but my brain is pretty much constant fuzz and confusion all the time at the moment so it’s hard to make any sort of real sense of it. ¬†But blogging is a good way to start!

Another previous post which was useful to re-read is¬†ED relapse warning signs. ¬†I wrote it about a year and a half ago based on a list of yellow/amber/red warning signs of possible ED relapse that I’d written with a psychologist I used to see as an inpatient way back in 2006, and it scared me a bit because I’m starting to show a lot of the signs again which is a definite motivator to try to address it now before it gets too intense. ¬†It’s always hard trying to figure out what ‘relapse’ actually is because I never really fully recovered in the first place but I REALLY don’t want to get back to inpatient point again and even though it would still be a long way off, I also don’t want to lose my job or even risk getting properly ‘ill’ again so I’m trying to use that as a reason to do something about it before it gets to that point. ¬†It’s hard though because although I’m aware things must have changed recently (people have commented on it and I’m definitely more food/weight fixated than I have been in a while), my weight isn’t particularly low compared to how it has been and even though I’m feeling tired and zoned out a lot of the time, I’m not physically ‘ill’ or passing out so it kind of feels like I’m making a big deal out of nothing and just being selfish. ¬†So hard to work it out!

I know I’ve already said it but have got total fuzz brain at the moment and I really need to try to sort it out enough to know what I’m trying to actually do. ¬†I’ve got the bitch in my head pretty much constantly reminding me that I’m just being selfish, I’m a lazy greedy bitch and I just need to get on with it and try not to let people notice but that’s bloody exhausting because the rules keep changing and I’m having to be active and walking ALL THE TIME especially if I’ve binged the night before or not managed to get the right amount of exercise in earlier on in the day. ¬†But it’s doubly hard to think about doing anything else because she starts up more aggressively and it’s really, really hard to ignore or think of anything else. ¬†But I REALLY don’t want to end up inpatient again and I know rationally that that is a possibility however far off, and I also know that the closer you get to that point, the harder it is to change anything so I really do want to do something now to stop that from happening.

It’s really hard when it genuinely doesn’t seem like a big problem at the moment though and even small changes seem really, really scary. ¬†I know my eating patterns aren’t ideal but they never really have been (except briefly just after I was inpatient) and it’s only really since coming off medication that it’s been a more obvious issue because my weight went down a bit. ¬†But it feels so much safer the way it is- obsessions are less intense, it’s easier to rationalise feeling fat/lazy/selfish, I’m constantly a bit zoned out so things don’t get to me as much (although having said that, I had three meltdowns over the weekend including one where I was crying, pulling my hair out and banging my head off the floor so maybe that’s not *totally* accurate), and things seem more manageable than the intense obsessions and mood swings I’d been experiencing. ¬†But at the same time, I’m also not sleeping properly, tired all the time, finding it hard to run properly (and hating it), not really enjoying anything and feeling like I should be exercising all the time even if I’m exhausted which also isn’t great.

A friend who I really trust brought it up last week and said that I really need to make some changes before someone at work says something and so I don’t get to inpatient point again, and she’s not the sort of person who would say things she doesn’t mean. ¬†She’s been really direct and honest about it which really helps to put things into perspective but as soon as I’m on my own and my brain starts up, it gets confusing and overwhelming again and I still have no idea how I feel about it except that it’s bloody scary and I feel stuck and overwhelmed. ¬†The directness really does help though and she’s set me a challenge of swapping low calorie soup for regular soup one night this week which I know doesn’t sound like much but every time I’ve tried so far, it’s sent my brain into overload- didn’t realise how confusing soup could be but after spending nearly 40 minutes in the supermarket trying to work out which one to get.

It was really hard because I ‘need’ the right amount of protein per 100g as well as trying to work out what an equivalent to the soup I’d usually get would be without ‘cheating’ and getting the lowest calorie regular soup which I couldn’t get anyway because it didn’t have enough protein; regular soup cans say they serve two which would mean one serving is less than the low calorie soup I usually get which would defeat the point and be cheating (that caused a ridiculous amount of brain arguing!) and also need it to be an easyish number of calories in the can to work out in a daily amount. ¬†I did finally manage to get a can of soup though which had the ‘right’ amount of protein, counted towards 5 a day, also had a good amount of fibre and was (scarily) almost twice the amount of calories of the soup I usually have without being too much volume which would make me feel too full and risk bingeing straight after, which was a definite achievement! ¬†Haven’t managed to have it yet though :/ I meant to try it over the weekend but had a really stressful few days where nothing really went to plan so going to have it for tea tomorrow night after work. ¬†Really, really nervous but it helps that it’s not *my* choice if that makes sense- it was my friend’s idea and I said I’d try it, and I’m trying really hard to think of it as a ‘rule’ I’ve got to stick to instead of a choice. ¬†Which I know sounds ridiculous but it’s worth a try- every time I’ve tried to make the decisions on my own, I’ve never managed to stick to it and I really do want to make it work this time.

Another ‘rule’ I’ve set for myself is that I need to be doing something creative from 9pm every night- either blogging, drawing, colouring or writing, and I’m really going to try to stick to that too. ¬†Lots of reasons but mainly because it puts a ‘limit’ on the amount of exercise I can do in the evenings- longer evenings has meant a ridiculous amount of walking (or sometimes running) which really isn’t helping and is exhausting, and also because I’ve totally got out of the habit of doing anything creative which isn’t great because creative stuff is a really good way to ‘escape’ my brain for a while and to try to channel it more constructively. ¬†So hoping to stick to that too! ¬†Will see how it goes anyway…

More SVN Challenge runs!

Hi guys, I’m really sorry I haven’t written a blog post in so long; haven’t been feeling great recently and getting really frustrated with (lack of) mental health support, and I don’t like posting non-positive writing so thought it would be best to give blogging a break for a while. ¬†Also haven’t been running much recently since I cracked a rib a couple of months ago but FINALLY getting back into it and ran two awesome Saxons Vikings and Normans events last weekend which were, as usual, amazing, well organised and massively supportive. ¬†Thanks Traviss, Rachel, Karen and everyone else who helped to organise and run the events!

I was really nervous about running the events because I hadn’t run properly in over two months and I tried to run an ultra event a couple of weeks ago but only managed 16 miles due to rib pain and cold weather, and I drove down to Kent half-expecting this weekend to be similar. ¬†I’d had a busy week at work and was exhausted before I even got there but when I arrived in Deal and went to the B+B (which I’d booked because it was the cheapest), I was mega excited to find out that it was on the seafront! ¬†The sunrise walk before the runs and moonlight afterwards made the trip to Kent worth it even if the running didn’t work out at all, and I was looking forward to seeing friends from other runs who were also taking part so I started to feel a bit more optimistic although still very, very nervous.

Saturday was the Betteshanger Challenge and I kept reminding myself that some (crazy) people were doing 10 marathons in 10 days and this would be their 9th so I didn’t really have anything to complain about! ¬†I still wasn’t sure if I should aim for a marathon or ultra so I channelled my inner teen and asked the collective wisdom that is Instagram via an insta poll and the results came back as 70% ultra. ¬†So that pretty much decided that!

One of the things I love most about SVN events is how friendly, accepting and welcoming the people are. ¬†It’s amazing when people not only recognise you but also seem happy to see you, and it’s like you only ran with them last week instead of months ago. ¬†And everyone is so inclusive that even though I’d one of the slowest runners on the planet, it really doesn’t feel like it and everyone is equal even though there are people there with crazy records!

When the run started it was FREEZING and I ran the first lap wearing pretty much the amount of layers you’d wear on a ski slope. ¬†It warmed up *slightly* by the second and third laps though so I swapped my ski jacket for a lighter windproof running one and took off one of the pairs of gloves, still cold but definitely better than running like I was doing some sort of polar marathon.

The course wasn’t the most exciting in the world; it started up a hill past the visitor centre then followed a two mile cycle track and back to the start which was a bit monotonous after a while but at least you couldn’t get lost and the views weren’t terrible. ¬†It was also really, really cold (although I was told it was much colder during the week) and my temperature regulation is a bit rubbish so I was really feeling it as the race went on. ¬†I couldn’t seem to get into the usual rhythm but managed to settle into a relatively OK state of half-jogging and brain slowedness if not totally quiet, which seemed about as much as I could hope for. ¬†So I carried on longer than I thought I’d be able to and started to connect more with the run as the time went on.

Part of the reason I didn’t quit at half marathon (which I seriously considered) was that I was fortunate enough to run into the awesome and inspiring Nick Nicholson who I’ve run with before on previous races and who never fails to amaze me with his pretty much constant running and amazing world records. ¬†I’d been feeling a bit demoralised and exhausted but Nick put up with several laps of me talking pretty much random crap at him (until once again, I ditched him for coffee- I promise it’s not personal, Nick!) and decided to go for the ultra after all. ¬†Then the sky decided to showcase its awesomeness and there was one of the most incredible sunsets I’ve ever seen which, coupled with David Bowie, made the last couple of laps feel like a sort of religious experience. ¬†Amazing!!

As anyone who’s ever seen my Instagram page (@ultrarunning.geek) will know, I’m a bit obsessed with taking pictures of the sky and nature but this was seriously incredible. ¬†It made the freezing start and icy wind absolutely worth it and I almost didn’t want to stop by the end even though I was physically exhausted and emotionally drained. ¬†There’s something magical about running when the light’s an intense gold and the world seems strangely magnified and detailed, and that’s the point when I start feeling fully connected with the world around me and with God. ¬†Took way too many photos so here are a few more!

I was absolutely exhausted by the time I got back to the B+B and after porridge, coffee and a hot shower (because my body felt like I’d spent the day in a walk-in freezer!), I was ready to go to bed at about 7pm! ¬†I forced myself to stay awake for a few hours though, did some drawing and wrote in my diary (because I really am a throwback 90s kid!) and went to bed finally about 11pm in the hope that I might actually get some sleep. ¬†As usual for the moment, I couldn’t get to sleep and had several fights with the duvet in an attempt to get warm (even with hot water bottles and blankets!) and it seemed like ages of listening to Harry Potter to actually fall asleep but I must have done because next thing I remember it was 3am and I was awake again.

The second day was much harder than the first. ¬†I was physically tired even after three cups of coffee and achy from the day before, and I’d started to get a cold which didn’t help (apart from the amusement of being IDd for Lemsip!). ¬†My mood was also pretty rubbish for no particular reason and I kind of wanted to crash and hide in Homeland DVDs for the whole day but obviously that wasn’t an option. ¬†So I used my usual strategy of using Instagram for accountability and asked via a second insta poll if I should aim for marathon or ultra. ¬†THANKFULLY the vote was ‘marathon’ at 57% to 43% so I set that as my target and it gave me a legitimate reason not to push for an ultra.

Sunday wasn’t quite as cold as Saturday and I didn’t have to start in a ski jacket and two pairs of gloves which was a relief! ¬†The course was also nicer- it was a 4.3 mile loop with undulating footpath and trail which was really good to run on and again, you couldn’t really get lost. ¬†So on one level I was enjoying the run much more than I had the previous day but I was also physically exhausted, still cold and irrationally anxious which made it really hard to settle into the running.

Then the weather decided to make things even harder with icy rain and wind. ¬†I had a waterproof with a hood and several layers but it was that horrible smeary rain which seems to penetrate through every layer you have so it was pretty much cold and wet whatever you did. ¬†I was literally shivering as I was running which wasn’t fun and I’d also started to feel a bit dizzy and nauseous with tiredness which I tried unsuccessfully to combat with chocolate and Haribo- you know the run’s not going great when Haribo doesn’t work!!

One of the things that really does help when you’re feeling rubbish when running is supportive texts because it makes you feel more connected and like you’re not totally on your own running in the middle of nowhere, and thank you so so much to everyone who sent messages. ¬†I was ready to quit at halfway again but I’d got some lovely messages from close friends and really wanted to get to at least marathon so carried on with the help of lovely friends and family. ¬†Thank you!!

I didn’t take many photos on the second day, partly because I was exhausted and partly because it was so cold and wet that I didn’t want to take my gloves off to take a photo. ¬†But I did get a few good ones in between rain showers and it really was a typical, damp autumn run in beautiful scenery.

By the end, I was so tired that I could hardly run straight and shivery cold, and I just wanted to finish. ¬†The last part of the lap was a bit hilly and I could really feel it in my knees as I tried to complete in under the time limit, and the last stretch seemed to last forever. ¬†But finally it was over and, being a Lucky Dip Challenge, there was a choice of random medals. ¬†I didn’t really have much of a preference and couldn’t decide, and then one of the race organisers asked me if I wanted a Formula One medal!! ¬†I’m a MASSIVE F1 fan and said yes if there was one, and she said that she’d saved me one because she knew I liked F1! ¬†It was so so nice of her and I got a bit over-excited, acting like a ten year old on Christmas Day, jumping up and down and showing random people (ridiculous post-run emotions even for me!) then I suddenly wanted to cry. ¬†I was still absolutely freezing which might also have contributed to the over-emotion so I went into the visitor centre and got out my blanket, hot water bottle and hand warmers which were an absolute godsend!

Once I’d warmed up a bit, I could drive home and after nearly 5 hours of driving (M25 traffic then accident on M40), I was ready to crash out. ¬†I had a quick shower and some porridge (with blueberries, thanks to a friend’s suggestion) then went straight to bed. ¬†Amazingly I actually fell asleep relatively quickly but that meant that I woke up ridiculously early so you can’t really win… ¬†So worth it though!! ¬†Was awesome to see so many people I knew and to catch up with people, and can’t wait to see you all at another SVN event soon!

Frustration about mental health and how it impacts life choices

Sorry I haven’t posted much in ages :/ not been massively busy or anything (school holidays atm) but brain has been a bit of a sieve recently and finding it hard to keep up with basically anything that isn’t running so been half-planning blog posts then never getting round to finishing them so if this is a bit disjointed, that’s why! ¬†Thanks for still reading though if you are ūüôā

The main thing I wanted to write about in this blog post is frustration about ‘recovery’ (or not being clinically ‘recovered’) and how that impacts over and over on what you want to do with your life but in order to write about that, it would be important to understand exactly what recovery ‘is’ and I realised I still don’t really know. ¬†On one level, it’s simple- the OED defines it as¬†“A return to a normal state of health, mind, or strength” but that requires an implicit understanding of what ‘normal’ means and anyone with any experience at all of mental health issues in any context will know that that’s impossible to apply universally and doesn’t even exist as a yardstick to measure from.

Another definition would be the absence of symptoms or ‘illness’ but again that’s really difficult with mental health because everyone experiences symptoms of anxiety, depression, paranoia etc at some point and there’s no real way to decide what’s ‘normal’ and what’s ‘illness’. ¬†I heard someone say recently that recovery isn’t the absence of symptoms but it’s when your symptoms don’t bother you any more, which I like as a concept and in everyday life that’s probably the most useful definition I’ve come across but it still doesn’t help when you’re got a clinical diagnosis (or diagnoses) of specific mental health issues that you still show enough symptoms of to meet the criteria so can’t be classified as ‘recovered’ even if you have managed to build up enough coping strategies or techniques that it doesn’t significantly impact your day-to-day life. ¬†I wrote a blog post about similar ideas a few months ago- see 21/05/07: probably the most significant day of my life. ¬†Reflections a decade on‚Ķ¬†if you’re interested. ¬†So complicated and frustrating!!

The reason I’m thinking about this so much at the moment (and this week in particular) is because I applied to foster a couple of months ago and found out yesterday that the application was unsuccessful because of my medical reference which wasn’t that surprising as I’ve had issues with occupational health before when I’ve applied for certain jobs and had the job offer withdrawn due to medical references, but it’s still really frustrating and disappointing. ¬†It’s partly the frustration of medical (mental health) issues continually getting in the way of things I’m really, genuinely passionate about and want to do with my life but also anger because I know I’m mentally more stable over the last few years than I have ever been and I really don’t know what more I can do to prove that to people. ¬†Anger at myself for not having managed to ‘recover’ from a clinical perspective but also (horribly, because I hate feeling angry at other people) anger at the whole system and how restrictive it is. ¬†I know I could be a good foster carer and I genuinely would put the child’s needs above anything else. ¬†It’s what I try to do in every job I’ve ever had- child/young person/service user’s needs are absolute priority and that’s the main ‘rule’ in my life and being totally honest, it’s the main reason I’m still trying to get rid of the horrible parts of my brain because it would be so much easier just to accept it and go along with everything the bitch in my head tells me but I try so hard not to and to be ‘normal’ as much as I can because of the impact that could have on kids I work with or who I’m close to. ¬†Which makes it doubly frustrating when as far as health professionals are concerned, it’s like I’ve not managed anything at all.

The other side to the situation is the fact that I really, really, REALLY want to have kids. ¬†I know it’s something most people want at some point in their lives and sometimes it doesn’t work out for various reasons, but since I was really little I’ve wanted lots of kids and I’d give up anything else to be able to have them. ¬†To me, it’s the point of being an adult and probably the only benefit to it. ¬†There’s already the complication of being asexual and never being in a relationship which is something I can’t see ever changing because I’ve genuinely never experienced sexual or romantic attraction to anyone, and the idea of having sex with anyone makes me feel physically sick. ¬†Then there’s the other problem of having had an eating disorder for 17 years; I still have very irregular periods, I’m not sure how fertile I would be even if I was sexually active and I also know that with my current food intake, it could be potentially dangerous for an unborn baby so would have to make some drastic changes although I think that pregnancy would be a massive motivator for this because the baby would have to come first.

Adoption or fostering seemed the only option which is why it’s so upsetting that it’s not a possibility. ¬†The woman who assessed me was lovely and suggested voluntary organisations which support young people in care and I have applied to volunteer for, but it’s not the same as actually having the parent-style responsibility and relationship with the young person which is what I really, really want. ¬†It’s hard to describe because I don’t really know what the feeling is :/ it’s like an intense need to ‘give’ to and care for another person in a way that’s more than childcare or friendship- I want to be able to fully support someone and for their needs to be my absolute priority, which I know sounds weird and it’s not exactly what I’m trying to say but I have no idea how to phrase it.

I work with kids and have done for years which I absolutely love and I’ve been lucky enough to be able to develop very close bonds with kids and young people, but it’s not the same as being the main caregiver for someone and having that sort of bond with them even though I know that parenting in any form is hard and isn’t always a positive experience. ¬†But even if it’s not, I still want to give it a try- I get really upset when people say things like ‘it’s hard being a parent, you’re lucky you can give the kids back, you wouldn’t feel like that if you had your own’ etc because actually I WANT the challenges of parenthood, I hate having to ‘give kids back’ and (I know this is horrible) I get really, really jealous of parents’ relationships with their kids even when they’re arguing because I really want that sort of bond and to know that even if someone is angry at you at that particular moment, you’re still their parent and there’s still an unconditional bond there which won’t go away just because they’re upset. ¬†I’m not being naive or thinking that parenting is easy or anything like that; I just really, really want to be a parent. ¬†I’m 30 now and have wanted kids for years, and I’m starting to realise I probably won’t ever have them which hurts so much just to think about and I really, really don’t want it to be true.

I also know though that it would be selfish to go through with the fostering application knowing that it could be potentially damaging for a child or young person who’s already vulnerable to have a foster carer with (apparently) clinically significant mental health issues so I have to respect and accept the decision of fostering services even though I am really upset about it. ¬†I’m not angry with them at all- they need to prioritise the needs of young people and I completely understand that, but I am frustrated about the system and how I’m seen as not “mentally stable” enough to be a foster carer. ¬†The main issues brought up in the medical report and in discussion with fostering services were emotion regulation issues relating to ASD (the GP said that he wasn’t confident I’d be able to have enough emotional empathy or understanding to fully support a child with emotional issues) and having a “long-standing eating disorder” which is a factor that has impacted on occupational health in the past and I have no idea what I’m meant to be about it. ¬†Yes, I have had an eating disorder for the last 17 years but I haven’t been an inpatient in ten years, I eat regularly even if it is only certain foods and I am a ‘healthy’ weight.

I know I still have some issues around food and eating but it’s definitely not obvious and it’s mostly the bitch in my head shouting at me 24/7 which is the problem and not the actual behavioural/physical side which I’ve learnt to manage pretty well over the last few years and I’m not exactly going to vocalise the bitch’s words to a young person I’m caring for. ¬†And to me, it’s not as potentially risky as someone who drinks alcohol regularly or smokes (for example) which is totally socially acceptable. ¬†It’s also frustrating because ED services won’t work with me anymore because it’s ‘chronic’ and my weight’s stable so I don’t meet the criteria for ED services but it’s still seen as a medical issue that stops me from being able to do things that I’m most passionate about like having/looking after children, working with young people in mental health services or being a teacher? ¬†I have no idea what the solution is and if anyone has any experience of this, please feel free to email me on rainbowsandrecovery@gmail.com!

Really sorry that this seems to have been a mostly ranting post and haven’t even got round to trying to define ‘recovery’ properly yet. ¬†Will shut up now and save that for another post… ¬†Thanks for reading ūüôā