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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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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