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.

Hidden

You say you don’t like to tell me you love me too often, so that when you do, it means ‘more’.

Those hidden words would mean a lot to me, if I were to hear them a little more often.

You say I’m perfect the way I am but I feel as though you keep me hidden.

You’re not hidden in my life. You are happy to be a part of my world.

You’ll come to events that my friends or I host.

But I’m never invited to yours.

19 months and I haven’t met a single person.

No work colleagues.

No friends you take part in your hobbies with.

Only your housemate but, I’m sorry, that doesn’t count.

I’m in your profile picture but you never post any other pictures of the adventures we get up to.

Yet you do with everyone else.

Family, colleagues, friends.

Just not me.

You always look so happy too. You never look that happy in any pictures I take.

Maybe I’m reading too much into it.

Maybe you’re making me feel ashamed of myself for no real reason. I know you would never mean to.

But I’ve been kept hidden before. I’ve been plenty of peoples ‘dirty little secret’. 

I’ve told you I feel hidden and yet nothing has changed.

God, how much just one introduction would mean to me.

But for now, I’m kept hidden.

 

 

Unresolved

Please don’t ask me to talk about my eating disorder if you’re going to end the conversation as soon as I tell you what’s going on.

Please don’t ask me to open up when I say I don’t want to, but you decide I should, and then leave me with these thoughts festering in my brain.

Please don’t ask me to talk to you and then leave the conversation without even telling me how you felt. Why couldn’t we have continued to talk about something else? Anything else?

You started a conversation that you weren’t prepared to finish and now I’m on my own with my ED emotions eating away at me. Now I have no one to talk through all these toxic thoughts with.

I think you could be hurting. Hurting because I’m hurting. But shutting down right in front of me…

I feel so alone.

You’ve left me on my own until you decide we can talk, which is in 6 days’ time. 6 whole days – that’s when you’ve decided we can finish this conversation.

Now I’m trying to find the courage to face those 6 days with all these unresolved emotions seeping through my body like poison. But I don’t think I have any courage left in me.

Things have been left unresolved and I am left unravelling.

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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.

Instagram: @umbrella_adventures_

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…

Instagram: umbrella_adventures_

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.