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.

A Beautiful Paradox

seeingdouble

 

She was broken but never hopeless. Alone but never lonely. Her eyes reflected pain but projected courage. She was a beautiful paradox

I really like that quote and feel like I can massively relate to it. It always feels weird to have people say things to me like, ‘I love how confident you are, you don’t take crap from anyone!’ when deep down, I know I’m filled with self-doubt.

The look on people’s faces when they realise what I’ve gone through and what I’m currently going through can really say it all for me. They genuinely have no idea the happy, chatty girl with the infectious smile can be so broken inside. The problem is, I’m not pretending to be that happy person, I know that person is me. It’s just that beneath it all there is the girl struggling to glue herself back together.

All it takes is one nightmare from that night…one glance from a girl skinnier than me…one more family argument, to tear down that smile and the tears come running. I really am a confident person, definitely personality confident and definitely NOT body confident but I really am getting there with being comfortable with the way I look.

I met the other trainees this week and they were so skinny. They really were, no lumps and bumps, no chest like mine and I felt so huge. They were like sticks and there I am…most definitely not a stick. I felt so self-conscious…I’ve not felt like that since i was half-naked in a swimming costume. They were all talking about how great their lives were and are, their family background and their wonderful boyfriends. DOn’t get me wrong, every single girl would have been through similar shit like me and to be honest, they were lovely and I don’t think I met a single person I disliked. No one commented on my looks or weight, or made any hint or suggestion.

No one except me. I was so down that day and I relapsed when I got home.

The next day my latest gym delivery arrived, protein etc. and a new (complimentary) gym top. Its silly but new gym kit? That is most certainly the way to motivate you to go! I felt so good, I went and worked out for an hour, did my weights and finished with a run and I looked in the mirror and felt…proud. Staring back at me was the girl who (yes, I relapsed) but woke up today determined to continue on my journey of becoming the best possible version of myself.

And I was not skinny.

But I looked strong.

#StrongNotSkinny seems to be trending lately I suppose

And it felt good.

I want to be so skinny at times but I’m also happy to be strong.

I feel so inadequate as if I don’t deserve anything or anyone but I also believe I deserve special because I do believe I am special.

I want to be loved but I know I still don’t quite love myself so…as my favourite drag queen quotes… If you can’t love yourself how in the hell you gonna love someone else!

Haha here I am quoting Ru Paul (she is the best though).

I really am happier. I’m getting less focused on skinny and more focused on strong. My housemates seem to love me for me…I’m sure my new friends will love me for me and I’m sure that one day someone else will love me for me.

I really am a paradox. I feel simultaneously not good enough and too much. I suppose I need to keep journeying for the happy medium where the outside smiles and confidence truly reflects the inside smiles and confidence.

I’m not broken anymore, because I’ve already started to put myself back together. I am simply currently undergoing my re-construction.

The best of me is yet to come.

Be mine

I feel terrible saying this because of what happened last week. I tried to talk about it but it was still too raw, and he felt I was justifying what happened. I do understand that.

But I want to go out. I want my boyfriend to come with me.

To be proud to come out with me. To want to be seen holding my hand.

To show everyone that I’m his.

I hate going to parties and the like without him. Everyone asking why my boyfriend wouldn’t come with me.

I want to have romantic meals, or a walk in the park.

I want him to show me off to his friends and to let me show him off to mine.

I want to go to a party and dance with my boyfriend rather than dancing on my own.

I hate seeing other couples there, holding hands, dancing, cuddling, kissing.

I love him so why does he not want to come for a drink with me, to a party, to a BBQ. He doesn’t even have to pay for it.

Just come with me. Be with me. Outside of the flat.

I want to go to a party, have a drink and a dance but with him. Not with my friends…not having to stop guys from trying to dance with me.

And the more I drink the more I wish he could be there with me, dancing, holding my hand. Just there with me.

So I drink more.

I drank more.

But I have no argument. No leg to stand on. Not any more.

I want to be looked at as though I am the most beautiful girl in the world. I want him to hold my hand on the walk home. I want to be treated like I’m not something to be lost. I want him to be there and just know that he can’t be without me.

I want him to meet my friends and I want to meet his.

I want him to show how proud he is to be mine…

How proud he is, for me to be his…

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