Stuck in a rut

“But you’re fine” that’s what they say.

That’s what they always tell you.

But I don’t feel fine.

“So what if you’ve gained weight, you’re fine”

That’s how they continue.

But I don’t think “so what?”

I see more writing in my food diary, the increased number on the scale, an unhappy girl in the mirror looking at me.

I am that unhappy girl.

I’m trying to ignore the numbers and the thoughts but I’ve, simply put, struggled this week. I’m in a bit of a rut and I’m not sure how I can get out of it.

Just a touch of magic…

It is impossible to visit Disneyland and not feel happiness. I challenge you to find someone who has entered one of the parks and not enjoyed it one bit…but even if you do find someone,or you are in fact someone who doesn’t like Disneyland, then that’s perfectly acceptable.

Each to their own!

My boyfriend and I went to Paris for my birthday last weekend and before you jump to the same conclusion as all my friends of OMG that’s like soooo romantic…it genuinely wasn’t intended to be some overly-romantic-whisk-me-away-trip.

We’d actually planned it far in advance but that in itself didn’t take any of the magic away.

We decided to spend my actual birthday at Disneyland itself and I knew from the moment we settled on this that I was going to have a lot of fun. However, in hindsight, I totally underestimated just how much fun I would have.

I was in such an incredibly happy place both literally and metaphorically, that I had so much fun I actually forgot it was my birthday. In fact, I didn’t even get my presents until a whole two days later because we totally forgot. But that’s by the by because I simply had a great day.

There was one thing I noticed, however, which was that for the first birthday in what feels like forever, I don’t think I panicked.

I didn’t overthink each of my three meals, I didn’t panic because we hadn’t planned them either. I didn’t try to calculate my calories or what I therefore needed to burn off. I didn’t try to justify why I either did or did not want a certain piece of food.

Most importantly, I didn’t criticise myself once. I didn’t even whisper to myself that I was fat.

That really is such a nasty sounding word.

I was simply so happy and having such a wonderful time with my other half on our first trip away together that the dark parts of my mind were silent.

That’s the best way I can describe it – they were silent.

I’m not going to pretend they were silent on the other days of our trip, because they most definitely weren’t, but it’s relieving that they are becoming lighter and quieter in their nature.

I’ve decided I’m going back to therapy to address these final dark thoughts. To tackle the last little parts I’m struggling with the most because I still have some battles to go through. That in itself was an incredibly tough decision because I feel as though I am sort of fine.

But I don’t want to be sort of fine. I want to be healthy and perhaps that does require a little bit of professional guidance.

The fact my ED was silent on that one day means it can be silent on other days too. Whilst it’s not silent right now, I’ve decided to just enjoy the fact that, for that single day, it actually was.

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A better week

Well, if I’ve got all this time at the hospital to kill, I might as well spend some time writing.

I’m coping with this new course of treatment better now. I know I am because I’m not crying as much before, during or after each hospital visit. I still hate the way I look, the way they send me off to work, but I’m halfway through the course now so I’m sure it’ll all be over in no time.

One of the nurses thought I was crying over the treatment because I’m vain. Oh that set me off even more.

Crying over my looks is vain in a way, I get that. But beneath the red skin and greasy scalp from the treatment is…well…it’s a child, if I’m honest. It’s 6-year-old me being ridiculed by schoolchildren due to my claw hand, my wonky walk and my psoriasis-clad skin. It’s an 8-year-old me being carted to and from the hospital for various treatments – most of which either hurt or smelled bad but none of them worked.

It’s 9-year-old me after years of comfort eating or boredom eating (during appointments and the like) gaining loads of weight and simply giving the kids something else to make fun of me for. And then we reach 10-year-old me, being told by family that they wanted me to be skinny because no one would ever love a fat girl.

And I’m not going to even attempt to approach my teenage years.

Beneath this 25-year-old girl typing this post is simply a child who has spent 25 years of being diagnosed with disability after illness and disability. 25 years of non-stop hospital appointments and treatments.

And there are times I feel that child within me. I feel how much a simple hug would have made everything better. I feel the ache for a little more compassion back then.

A little extra love.

I am surrounded by love every single day. I know that now but throughout every diagnosis and every treatment it still surprises me that no one asks you how you feel. They ask what’s wrong (physically) and how the treatment might be going but no one asks you how you’re coping mentally.

Perhaps they’re too nervous too. Let’s be honest, mental health is a tricky subject to navigate at the best of times, especially by those who don’t understand it.

Another diagnosis. Another thing wrong with me. Another course of treatment.

But I’m feeling better than last week. I’m coping better than last week. And at the end of the day, that’s all I can ask for.

Support, love and a little bit of self-compassion – a recipe for a better week. Oh! And don’t forget pillow forts on balconies either…

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Back to Basics

 

Apologies as there may be some triggering thoughts here.

So, I thought I was doing okay and there were times I thought I was fine. Or at least the ‘Demon’ told me I was okay. Convinced me I didn’t need help. That there wasn’t an issue because what I was doing was keeping me ‘slim’.

Well you know what, what I was doing also made me sad. It also made me cry at my best friend’s birthday party because it made me so scared to be around food, drink and others. It made me angry at myself for not losing weight and it made me so incredibly insecure that my boyfriend would leave me if he found out.

I started to notice the ‘tricks’ coming back into play. Double/triple-checking that my housemates most definitely were not going to be home that evening. Going to toilets on floors at work that I knew nobody went to. That bag that sat in my wardrobe waiting for me to sneak it to the bins outside. Telling friends I had already eaten or would be eating later when I’d already planned to skip those meals.

And nobody really knew.

That in itself made it easier but deep down I almost ached for someone to ask. For that one person to see behind my smile and recognise that I was not okay. I was generally happy but I was in so much pain over what I was yet again doing to my body.

And then it happened. I hit rock bottom just as hard as previous relapses and I picked up the phone. I sat in the corner of my room, I suppose it felt safe, and I text my boyfriend and said point blank I needed him. That I needed to go round and I needed him to help me eat and to help me ‘keep it down’.

I was so scared he would leave or refuse just like others in the past. I was simultaneously scared that he would be upset with me or that I would hurt him by admitting what horrible cycle I’d fallen into once. I felt weak. Like a let-down. A failure.

Damaged.

That’s how I felt.

Damaged goods yet again at rock bottom.

My therapist leaving London last year hit me hard. I had seen him for four years and whilst I was in a really good place the thoughts of having to see someone else and start this process yet again scared the crap out of me and so when I needed help I didn’t feel like I could arrange to go see someone new. To open up about my not-so-great life once more.

But I told my boyfriend and my friends what I needed. For the first time in our relationship I didn’t wish he would offer what I needed…I simply asked. I asked to live with him for the next week or so because I felt I needed supervision. I asked him to sit down and help me plan my meals for the week and to ensure I stick to them regardless of if I tell him ‘I’m okay to change X and happy to eat Y instead.’ I asked him to help me send an email to my old therapist to ask for advice (which was the hardest step of all) and I asked him to come along to dinner with my parents in case I couldn’t handle it on my own. I asked him to help distract me when those thoughts about purging came running.

And he did.

I was upset that he cancelled seeing his friends because I felt that made me a burden but deep down it meant so much to me to know he cared that much.

And I literally told him everything.

I told him every thought that plagued my mind before and after each meal. I told him when I was scared to eat and when I wanted to be sick. I told him every perception I had of myself throughout the day. I told him every negative thought that crossed my mind and I told him of ‘tricks’ that I was ashamed of. I told him of some of my darkest periods of this illness and he just listened.

He didn’t judge, he didn’t comment, he just listened. And I told him that was exactly what I needed.

That’s all I ever need because, in a way, it simply helps me identify what is going wrong and decide what is going to help.

So we went and planned my meals and some gym sessions. He held my hand in the supermarket and he held my hand whilst I ate. We sent those emails and we spoke about the physical implications of this illness – what worries him the most…and whilst that wasn’t a fun conversation…it helped. Each time I ‘panic’ I try to think about the following:

  • I don’t want to have a heart attack due to the stress I’m placing on my body.
  • I don’t want to further damage my liver or kidneys.
  • I don’t want to become infertile.

Each time is ‘the last time’ and each time is one step closer to being that actual last time.

Sometimes the rigid planning makes me feel weak. I criticise myself for not being ‘normal’ and not being able to ‘do this on my own’. But I think I’ve finally after all this time admitted that the practical steps are things I am going to have to apply for the rest of my life. It’s not about needing them because I’m ill but rather that it’s a way of leading a healthy lifestyle.

So here I am, day five. Almost made it to a week since my last relapse.

 

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Today

I hate days like today.

The days where I hate every reflection of myself that I glimpse. The days where I have this uncomfortable feeling of disgust about myself and my image.

I hate these days where I become so scared, yet again, that I’m never going to be ‘perfect’. These days where my biggest fear is looking ‘fat’ this weekend.

I hate having days where the Demon plagues my thoughts with negativity. Days where I feel like I’m being swallowed whole.

Questioning every decision to eat, every exercise that doesn’t seem to shift any weight. Constantly questioning when, if ever, I’m going to feel good enough.

It screams at me that I’m huge and ugly. That I’m weak and disgusting. And the worst of it is, I appreciate these words aren’t true, that I am actually worth more than I think I am but that, in turn, makes me feel ashamed and embarrassed that I even have this illness in the first place.

I have these days where I do just fine, great in fact but I really hate that days like today seem to eradicate any progress I make.

Any step I took forward seems forgotten, lost in that dark space that swallows me whole.

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Hello 2018

I’ve not really been one for New Year’s Resolutions. I’ve always found the ‘New Year, New Me’ to be slightly superficial but major congrats to anyone who fully commits to their resolutions!

However, I do like to reflect and make goals.  (Same thing, I know!!)

I was at a party again for NYE, the same one as last year and it really dawned on me how quick the year has gone and how much has damn well happened. If I try to compare 2017 to the year before, I can definitely say without a doubt that it was a lot more successful.

I passed my final degree with a distinction. I travelled solo to places I’ve always wanted to see and made more travel plans for 2018. I had some amazing times with my friends. I started my new job after graduating and met someone who makes me really happy. I’ve also made some massive steps in my recovery this year.

When I try to make myself goals or rules, I always make them too strict. When I inevitably don’t stick to them, I feel guilty and it can send me down that awful ED spiral. So, I might not be making strict resolutions this year but I’m going to try make some changes to the usual goals I would make.

Instead of losing weight, I want to exercise 3-4 times a week.

Instead of questioning if our relationship is ‘okay’, I want to learn to trust that it is.

Instead of spending all my weekends in London, I want to try visit my friends more.

I want to reduce how many coffees = ‘lunch’ and slowly increase my intake.

I want to distract myself when I’m stressed with a mentally healthy hobby.

I want to feel less insecure by tackling my insecurities head on.

I want to stop feeling like my past is going to drag me down.

The insecurities one is a big one for me. I know I’m getting less and less insecure in my relationship. I do worry that he won’t want the ‘broken one’ or that I’ll ‘never be good enough.’ He’s definitely not as much of a ‘talker’ – as in, I definitely say those three little words and some cheesy stuff a lot more…but the stupid thing is, I know that he does feel the same way about me.

Because of the relatively awful past I’ve had with guys, I look for affirmation a lot. I need to know people are happy with me and that things are going well, as if to protect myself from nasty surprises or horrible situations that might occur.

So, those words and actions confirming the words mean so much to me.

I want to work on needing less of this though. To stop looking for the signs he loves me. Naturally, if they stop all together then I may need to be concerned! But I’m only going to self-sabotage if I don’t learn to just relax a bit.

When I’m with him, it’s all perfect. But when I’m apart – that’s when the fear starts and I can get triggered. I figured I’d bury myself into a new hobby so I’ve got something just for me to enjoy on my own. Hello new camera and photography courses! I’ve always loved capturing memories and nature, being the country bumpkin that I am, so here goes!

Here’s to an even better year.

Happy New Year Everyone xxx

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Near-Exhaustion

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The pain cuts deep. It stings and it burns and I simply can’t hold back the tears that fall. Taken back to hospital just when I thought I was okay. Just like always, the hope comes crashing down, once relaxed but back on guard.

Always seem to be falling. Always dragged backwards against my will. Weighed down, feeling like I could drown.

It hurts more than the pain that has brought me back to hospital.

It hurts more than the pain I felt from June 18.

It aches and it hurts.

The word that there is something else wrong with me.

Another diagnosis, another condition, another something or other wrong with me.

Another broken piece.

When I feel ‘fixed’ I get broken again.

Whether it’s by family, friends, boys or myself…just constantly being broken.

And I am so tired. I’m exhausted.

‘Damaged Goods’ – that’s what I am and you can tell me I’m not but it won’t change how I feel right now.

Taken to surgery, kidney fixed. Endless list of medication for the time being and review booked in. It wasn’t even too serious; I’ll be better by the end of the month. But a month off work, a few weeks away from my best friend…it’s hard not to feel broken and lonely when that’s all that you can relate to.

I wasn’t able to eat – the illness took care of that. I didn’t have an appetite for 3 weeks and if I ate, my body couldn’t keep it down. Such a triggering situation and I’m working to keep it away. To not relapse over those feelings of ’empty’, the feelings I used to crave.

They said it’s likely to happen again but there’s not much I can do. Just drink excessive amounts of water and they’ll monitor the rest. Just when I was getting a grip on so many things, getting so much happier in myself, just something else. Always something else.

Dragging me back to reality.

My reality that I’ll never be normal. That I’ll always be a burden to those who have to help me. That I’ll always be ill, disabled…used…abused…broken or worse.

Wouldn’t it be nice to eat and drink without fear? To not have the nightmares? To not be rushed to hospital at 4am? To not have to have emergency surgery?

Give me a week and I’ll know it’s not true. I’ll realise I’m tough for dealing with all my crap. I’ll smile because I’ll be proud of every step I’ve had to take in my pretty shitty life.

I know what I’m like…I’ll feel awesome in no time.

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