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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Restless Rest

I had a week off work last week for no reason other than I had holiday to use and figured that back in March, a random week off in June would work well.

I struggled that week more than I ever thought I would. Between all the hospital appointments I had scheduled and the inevitable ‘house hunt’ starting I struggled to fit in an ample amount of time to simply rest. I simultaneously struggled due to the lack of structure and routine I have settled into with work.

When I could fit in that much-needed-rest, I was just exhausted. I would sit in the park with my books and my laptop, ready to enjoy the sun when, in reality, I just sat there staring into the distance completely drained.

The fact I’d also gone through a period of work where I was finishing between 11pm and 2am every single night and having to work through the occasional weekend probably didn’t help either. It just meant I was exhausted before my week off, during my week off and now? Well,  I’m exhausted after my week off.

I started a new course of treatment at the hospital. They are trying to ‘de-scale’ my head as my psoriasis is getting out of control. They call the process ‘tarring’ and yes, that’s right. I sit there in my beautiful hospital gown whilst they put tar and various other concoctions all over my head. I’m then wrapped up in cling film, a shower cap is placed onto my head and I sit there for a length of time whilst I ‘bake’. Following this, they sit with an incredibly fine comb and ‘de-scale’ my head. They literally dig and scrape at the psoriasis in the hopes of peeling it off my head whilst removing as little hair as possible.

They want to do this 2-3 times a week and I hate it already.

I hate the psoriasis on my head. It’s itchy and it hurts. It gets infected and it makes my hair fall out. I’m also constantly leaving a trail of dandruff looking flakes everywhere I go. But the thing is, it’s also the least of my worries.

Along with psoriasis I have, psoriatic arthritis, cerebral palsy, epilepsy, a Volkmann’s Ischemic Contracture, nerve damage and ruptured muscles, kidney problems, endometriosis and the list of illnesses I’ve had over the years feels endless.

Oh yeah, don’t forget the bulimia now.

I’m almost half-way through my training contract and the department I am working in now is where I want to qualify. It’s where I want to work for the rest of my life following my training which means I’m so incredibly conscious of the time these treatments are going to take up. I’m terrified of not being allowed to qualify here for whatever reason and so I’m equally desperate to not give them any stick to beat me with, so to speak.

What’s worse is the way I look after these treatments. I have bits of scale that haven’t quite made their way down my hair strands literally just sat there and my hair is the most greasiest smelliest mess you can imagine.

It is oh so easy for them or anyone reading to tell me to put up with incredibly greasy hair for a short while but when I’m already so caught up with my body image I can’t shake this feeling of ‘ugly’ that’s seething through my body lately.

Even today people have been looking at and some have even commented on my hair and I actually cried over it. I cried because I’m tired. I am tired of frequently having to go to the hospital for something or other. I am sick of all these different appointments, treatments and medications that I have. I am just sick and tired of being sick.

All my illnesses and disabilities drain me completely.

Forever wishing I could know what it felt like to be normal because I just feel broken.

I feel so damaged and that makes me feel unworthy. Unworthy of my job, unworthy of my friends….unworthy of love.

And it’s those feelings that the ED clings to. It’s those emotions that the ED thrives off. That’s when it’s at its worst but just because I know that doesn’t make fighting it off any easier.

Just Because

Just because you see the smile doesn’t mean there isn’t anything hurting behind my eyes. Just because you see the food being eaten doesn’t mean there isn’t any fear behind every mouthful that I swallow.

I’m not pretending to be okay. I’m fighting to be okay.

And each day is getting better…I think so, anyway.

In fact, I know so.

But from the moment I wake to the moment I shut my eyes my mind is plagued with fears and doubts and questions. When will I eat? What is on my meal plan? Will I be hungry at the correct times and what if I’m not hungry at the right times? Will I lose weight? Am I going to gain weight? What if I break my plan and have a biscuit in that meeting at work? What if I want to purge later? What if I end up purging? What should I do tomorrow to make up for any slip ups today?

Even if I have my three meals and my one hour of exercise my mind is plagued with these thoughts and you know what, it’s tiring as hell.

It’s been 4 months of meal plans and increasing my exercise week-by-week and a massive reduction in both my restrictive and purging habits.

And here we are, still trundling along.

After I initially stopped the purging I did gain a few pounds, but in all honesty (other than the pesky number on the scales ruining my mood) it didn’t really change me or my body that much. I didn’t instantly become fatter from stopping the purging.

But I still had hoped that 4 months down the line, that I would have physically changed.

I do know I have some body fat to lose. I just desire my stomach to be flat. My stomach is the only part of me that I am so incredibly self-conscious about. It always has been.

Even as I am in the process of writing this out I simultaneously wish I didn’t care about my weight. I’ve sometimes spoken about wishing I was the girl I used to be who didn’t care about my weight or what people said. I realise today that, that’s a lie.

I was forced to pretend everything was okay. I supressed every single one of my emotions by putting on a smile and learning how to laugh the pain away (and comfort eating in the process). I wasn’t ‘me’…I wasn’t allowed to be me.

No wonder I snapped one day.

Is it normal to miss your illness?

I don’t know if ‘miss’ is the right word.

I don’t enjoy purging. I don’t enjoy restricting. I don’t miss not being able to get out of bed for being weak. I don’t miss the burning in my throat day and night. I don’t miss the cramping in my stomach from laxative abuse but maybe I miss all the lies it was telling me. The lies I believed.

Maybe I miss the false sense of control it gave me. The reassurance that I was going to be ‘better’ if I did what it was suggesting I do.

I need to find a positive in this post and I can find a good one – yes I initially gained some weight when I started eating 3 meals a day, but I haven’t gained more than those initial 4 pounds.

I haven’t suddenly become the fat girl I was scared of becoming. The fat girl I am still scared of becoming. I’ve just sort of hovered in this middle ground…little bit heavier…but a whole lot healthier.

I’m currently maintaining.

I’m writing this because I have a little bit of free time at work and I want to purge.

I want to purge even though I had 1 sandwich for lunch because…well let’s try to be honest…because deep down I don’t think this is about weight loss…I’m a little overworked, a little tired, a little self-conscious and a friend being cruel in the way she spoke about my ED a few nights ago has left me feeling vulnerable.

If I break it down further, the ‘fight’ on Sunday night left me remembering those who have used my ED to their advantage to control me. It made me remember and feel feelings of worthlessness and being taken for granted. It made me feel uncared for and ‘dumped’.

Let’s be honest, it just made feel shit.

Well at least I can pin point what’s triggering me this week.

I’m trying to remember that I’m a whole lot healthier than I was 4 months ago….4 pounds ago…

I wish being healthier didn’t hurt as much as it does right now.

They say actions speak louder than words but, just because my actions are those of a normal person, doesn’t mean the words my brain deals with aren’t deafening.

 

Number Crunching

I did that thing I wasn’t supposed to do.

I did it even though I knew it wasn’t going to do me any good.

I stepped on the scales and that pain I knew would arrive came rushing, burning through every part of my body.

I stood there, simply hurting.

8 weeks into recovery and I had gained some weight.

I could see it coming, I knew I had. I knew I felt bloated and bigger around my midriff. I mean, I’d spent hours criticising the way I looked before I even stepped onto the scales.

I ignored the fact I was now exercising 4-5 times a week. I forgot that it was the end of the day and I had been eating 3 meals a day like clockwork. I refused to accept I was wearing trainers and clothes when I took that fatal step onto the scales.

And boy, am I struggling with this weight gain?

I’m trying to reassure myself that 4 llb’s isn’t that bad but the Demon inside tells me it is. I’ve spent countless hours crying to my boyfriend because the need to restrict and the desire to purge have been at their loudest for the past 12 days.

It makes me feel embarrassed to need so much help lately.

I’m suffering from this constant fear that they’re all going to leave me.

Most of all, it hurts. Everything simply hurts and there’s no actual medication I can take that will numb the pain.

Going round in circles. Can’t face looking at my reflection but simultaneously can’t stop looking at my ‘imperfections’. Don’t want to eat my meals but fighting to make sure that I do.

At least I’m still fighting.

I’ve just spent the weekend in Manchester with my best friend. A trip we planned a while ago and if I hadn’t paid for my ticket, I may have given into the ED telling me to bail.

We did nothing. A few walks, a few movies and lots of cups of tea. But it was perfect and, as it turns out, just what I needed.

I needed nothing.

I needed time away from my place where, unfortunately, bad memories already exist.

I needed time to stop and breathe and think.

Time to just do nothing.

I feel better for it.

I’m trying to take some time to understand that just because I’ve gained weight, it doesn’t mean I’m fat. Just because the number has increased doesn’t mean I’m unworthy.

In fact, I’ve started to feel more ‘worthy’ than ever before.

And between you and me, I have learnt an incredible amount these last 8 weeks.

I’ve been using a compassionate mind work book, I’ve had 8 weeks of balanced meal plans and healthy exercise. I’ve had a few purges and hardly any binges and I’ve hardly skipped any meals.

It hurts and I constantly feel drained.

But I’m happier.

And whether or not I’ve gained 1-4 pounds…I’m definitely healthier.

And I’m sure that, one day, being skinny will not correlate to being ‘healthy’ but that, maybe those extra couple of pounds will.

Nothing like a train ride to dedicate some time to getting negative thoughts away from me ❤️

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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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‘Full of Joy’


I haven’t written for almost a month, in fact, I think it’s been almost exactly a month since I last wrote. Most of the times when I go silent it means something’s up, something I’m not quite ready to tackle head on but I’m pleased to say this time it’s quite the opposite.

To the north of mainland Greece there’s a teeny tiny island called ‘Skiathos’ and it is by far my favourite. I first came here when they told me I was too fat to represent my country at a Paralympic Games and whilst I arrived all doom and gloom I definitely left, yet again, quite the opposite.

So where else would I head to when I had about a month to myself? Where else would I go where my friends are more like family than my own? So yes, you guessed it, here I am in my favourite place in the entire world. 24 days down, 2 to go.

I thought I’d get bored or lonely at least once because just under four weeks is a long time. But fact of the matter is, I simply haven’t and I’ve loved every single minute. I’ve been meaning to write but I’ve just been so distracted with sun, sea and my family that I wish was my own. The only reason I’ve finally managed to sit down and type something out is because it’s stormy and windy today that I don’t really have any other option!

The first weeks were tough. I couldn’t help but compare myself to everyone else I saw around me. How flat I perceived their stomachs to be. How I perceived myself in comparison. I restricted and I purged but I also did get it under control. 12 weeks…2 episodes of purging. I tried to deal with it healthily and I will admit I struggled but being around old friends and adoptive family filled me with so much joy – there’s a phrase Greeks use in response to the question, ‘How are you?’ – mi hara – ‘full of joy’ and I think that in itself is a beautiful response.

One day I woke up insanely happy, I felt some sort of spring in my step and I even later in the day cried over text to my bestest. I simply felt happy. I’ve tried to change how I word things – I would say ‘everyone is so much skinnier than me’ and today I noticed I wrote ‘how I perceived…’ . Trying to develop my awareness of my eating disorder symptoms. I used to write I missed who I used to be before my ED and during this trip I realised I should never have focused on becoming a past version of myself because, simply put, we all change. And, yes, I’ve experienced some horrible things but that doesn’t mean I won’t become the best version of myself as a result.

I told him I loved him. The three words slipped out after weeks of me trying to hold them back. I knew I wouldn’t hear them said to me and that was okay but naturally not the greatest feeling. It got to me a bit but now? I’m completely different. I knew I wouldn’t hear them but I still wanted to say how I felt. I didn’t need to hear them back regardless of how much I want to hear them one day. I was brave enough to put my heart on the line because I cared about being honest with my feelings – for myself as much as for him.

Working really hard to separate my inecurities from reality.

Don’t get me wrong, it’s a scary sorta limbo. I know we’re pretty awesome and the fact he’s made a noticeable effort to text more as I’m more of a ‘communicator’ so to speak, the dedicated weekly face time slot and the simple fact that if I need him, really need him, he’s there…and yeah, we’re pretty awesome together…there’s no need to worry. I don’t want to reach that stage where I may have to deal with a guy who decides he’s never gonna love me but I can’t live in fear of something that’s only got a 50% chance of occurring. I’d probably self-sabotage it all that way anyway.

He does say something to me though – ‘I like you an absolute lot’

I think I like that more than ‘I love you’

Bit like how I prefer the Greek saying of ‘I’m full of joy’ rather than ‘I’m good/fine/okay’ because when I say the latter, some of it is a lie…but I’m always full of joy so to speak as I’m one of those people who finds happiness in the simplest of things, always happy even if I’m not okay with my body shape or my perception of myself.

Maybe I’ll start focusing on trying to be full of joy. Focused on the little things that bring me happiness rather than the things that make me feel okay about myself…

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