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.

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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Times Like This

Woken up 4am Thursday morning with a pain in my left hand side. A stabbing pain that made me scream and cry and call out for my flatmates.

8 hours later and the hospital sent me home. Hand in hand with some paracetamol, they couldn’t work out what had happened to me and said I remained a ‘mystery’. Forever a mystery, even a friend commented that I am ‘always in hospital’. Times like this make me feel numb, never knowing what’s wrong other than that there is always something wrong with me. Times like this make me feel broken.

5am Friday morning and the pain was back. So was the hospital and the doctors claiming there was nothing wrong with me. I cried. My boyfriend was there to hold my hand this time and he held it tight as I cried. All of the pain, all the exhaustion and all the stress of being told I was ‘fine’. I’m always fine…

They sent me home with codeine this time and it seemed to do the trick but on Friday the pain never left and neither did he. He stayed the day and rang the doctor who told us to go back on the evening. And so we did. He held me tight and he took me back. He held me when the pain came back and he wiped away every tear. He held my hand whilst they did all their tests and he really helped that fear. He calmed me down. Though I could tell he was panicking, he knew what I needed and he stroked my hair, held me again trying to help me sleep.

Saturday morning, 2am, and the doctors had found me a bed but he wasn’t allowed to stay. That was the first time the fear came back and each time the pain woke me up I felt more scared, more lonely. Counting down the hours minutes and seconds until 2pm so that he could come back and hold me.

On regular morphine now, they ran more tests and eventually found the cause. Inflammation and water on my kidneys along with this teeny tiny 3mm stone. So again, but with an appointment for a specialist next week, they sent me home.

I didn’t expect him to stay. 3 days of hospital was surely enough but he spent Sunday evening with me. Helping me with every little thing. The smallest things that mean the most. I could tell he was worried but together we got through it. He kept me distracted when I needed it the most and he held me when the pain made me cry all over again. He set alarms on his phone to make sure I had medication at 12am, 4am and 8am. He even worked from home at my flat on Monday just to keep an eye.

Times like that make me realise just how much he cares. I’ve always known it, always sure of it but times like this make me feel loved. Spend so much time feeling worthless and unloved and times like that make me feel so wrong. Telling me he ‘wanted his Len back’ made me realise how much he really does. How much he wants me to get better in all aspects . Feeling cared for, loved. All I could want but it means so much more than it did before.

Right where I needed him when I needed him and yet he went above and beyond what I could have ever expected.

Times like this make me want to get better with my ED. What if that ‘one last purge’ made me this ill? It’s been a while but kidney damage can be caused by bulimia so what if…almost not worth thinking about but it is additional motivation.

Times like this, thanks to the illness but mainly thanks to him, make me want to become even healthier.

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Ruptured Weekends Can Always Be Fixed

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Well this wasn’t exactly how I expected my weekend to start…actually last week was nothing if not full of unexpected events.

I remember waking up in the middle of the night with this niggling pain in my lower abdomen. I tried to get comfortable but the pain refused to subside. I looked at my phone and it was something like 5am so I tried to sleep but then all of a sudden I felt as though a knife had cut right through my right hand side.

The pain was incredible, I couldn’t move and could barely breathe. I managed to pull myself up, head spinning and somehow made it to the bathroom to throw up before passing out on the bathroom floor. I only know I passed out because I woke up there completely disoriented. The pain was getting worse so I crawled to my phone and saw it was now 6am. I hate going to the hospital, hate something else going wrong but I knew I had to go.

When I got there, they rushed me right through, tests being done immediately as I tried to get comfortable lying down. God knows what painkillers they gave me but god, did I need them. I was genuinely scared. I was on my own, genuinely in too much pain to pick up my phone to ring anyone. I was shaking and freezing, stomach twisting, passing in and out and then the bleeding started.

I don’t remember much else except waking up to this drip in my arm curled up on the bed. They ran so many tests on me and concluded I’d probably had a cyst on my ovary that had ruptured. Very normal to have and, luckily, everything was going to be fine.

That panic though. That fear that was coursing through my body at 5 am hasn’t quite left me yet though. I’m still quite tight, bit tender around that area but after spending the whole day in bed on Saturday I felt absolutely fine. Just tired and drugged up but absolutely fine. Couple nasty bruises from passing out but nothing major. It’s incredible how something relatively normal, and not too serious, caused me so much pain.

I don’t think I’ve ever been that scared.

I don’t think I’ve ever felt so alone.

The evening was fun though, I’d arranged plans and was in two minds about heading out. To be honest, if I wasn’t okay, I genuinely would not have gone. But the scans showed there were no more cysts and the vast amount of tests they did confirmed nothing else was going wrong inside me.

I do wish I wasn’t always that girl with something going wrong with her. I feel as though it makes me unattractive, in the sense that, people might think I’m hard work because things seem to go wrong with me. Problem is…its not even my fault, I’m just a bit unlucky. It’s funny though, how I didn’t really want people to find out I had spent the early hours until the afternoon in hospital because I genuinely didn’t want to come across as attention-seeking or melodramatic.

Just once, wouldn’t it be nice, to go for a little stretch of time where something doesn’t go wrong. Where something doesn’t happen to me. Well, not gonna lie, it’s been somewhat of a while since I was injured or ill. I just need to work on the timing! As always, its how we deal with hurdles thrown our way that defines us rather than what we’ve had to deal with.

As always, by the evening I was happy and having fun.

As always, I was smiling.

Not quite as always…I ate a curry…and I enjoyed it…I let myself enjoy it…for once there was no fear. I also had a Sunday dinner yesterday. I can’t even remember the last time I ate one of those.

So, I might be the girl who has things go wrong. More frequently than others, it seems. But I’m also the girl who ate two trigger meals this weekend but didn’t get triggered.

The girl who’s always smiling.

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