Being sick is really weird. and like I feel like I talk about it a lot at these points when I'm going through a flare, and I think it's hard for most people who aren't sick to grasp, this is my every day.
I don't get a day off from this. I mean it's always there, it's been there for 2 years. I feel kinda bad talking about it so much when it's a flare but it's just so much part of my life. Today, I literally can't get out of bed. I fucking want to do painting and uni work but I can't. Yesterday, I got up, got a migraine or bad headache and went back to bed. I wish this wasn't a thing I had to go through, but it is.
Going on from that, I feel kinda guilty every time I talk about being sick, I second guess myself contiuously posting stuff about it on the chat, it always feels like a taboo subject. Like periods. I even feel weird saying I'm sick but that's what I am, sucks but hey, I literally can't get out of bed today without getting a shit headache and I have shitty chest pain.
And that sucks. Like the periods thing as well, but the illness thing because my life is fucking shit at the moment. I mean I am trying to get a job but I'm also wondering if I can function like a normal human being.
When you're sick, it's like the good days might mean everything is fine, like I can still see visual snow and trails but I can function. And then there are also the bad days, like yesterday and today and thinking about it, probably tomorrow. No matter how well I eat or how much water I drink, how little coffee I drink or how much alcohol I do, how many pills I take, there are always fluctuations.
I've been thinking about the upcoming appointment with the Neurologist , maybe I'll be diagnosed with something shit. It sounds weird to say it but to me that would be a slight relief. At least then I'd have something tangible to go, this is what I have, this is what can be done, this is what's likely to happen. It sounds strange, but the worst thing for me would be going in there and someone saying, we still don't know or, you just have weird migraines. I am so sick of not knowing what's going on. It's so intangible for me, I can't deal with it, it's just a constant state of transition, flare and not flare.
I don't want to hear people's opinions on it 'just being migraines' again. I can't deal with that shit continuously, because most of the time they literally have no idea what they are talking about. Oh wow, one time you were in pain? that's totally not like being sick for 2 years. I'm just so done with that. I have given my full allotment of fucks for that. All I really want to hear, is 'that sucks, I'm sorry, we care about you' although maybe not so overtly, not 'I knew someone who had something kinda not really similar and they are fine now', it's just not helpful, or re-assuring at all.
Oh and at the end of all this, my dad said to my mum 'I didn't mean, I don't believe the neurologist, I just mean the neurologist shouldn't tell Emily, what the possibilities of her condition are, it might scare her'. Yeah thanks Dad, I'm a child who can't deal with the ramifications of being sick. You don't need to protect me, you need to support me and tell me you care, and that's it. That's literally all you have to do. I can deal with the possibilities of my condition, you're mistrust of the neurologist makes my life way more difficult than hearing things I actually need to know. I don't want to be kept in the dark like an 8 year old, christ.
Ok this turned into a rant. I'm kinda sorry, but also I needed to say this stuff to you guys and in general.
3 comments:
it can feel weirdly taboo to talk about this kind of thing (sickness but I guess also periods?) but please talk about it anyway! i'm glad to be kept updated on this shit. i'm worried about you man. and if you feel like you can't talk to anyone about it I/all of us am/are always here for you! even if i'm currenty on the other side of the planet it doesn't matter we have the internet these days
this whole thing is such a shitty situation! so many people in the world just lack basic empathy, seriously. like, someone telling you about their illness is not an opportunity to show off your life experience by showing how one of your friends was sick once, as if all sickness was somehow equally bad. blugh
i hope you're at least a bit better soon and good luck with the appointment <3
Man, don't feel like it's taboo. If it's the case of writing it in the chat and it being ignored, in my perspective i read what you write and acknowledge it, but can only think of saying 'i support you' in various ways because that's really all i can think of. I do support you, but that's all i can do; idk what's up with your condition and neither do you or them so it's hard to say anything else.
I've always been interested in how you describe your experiences, you know i love neurology and think it's amazing how a different human being can see/feel so many things unrelatable to my own views and emotions- and involuntarily ooft man.
You're a warrior man, keep strong and head up!
Hey Em! we're all here for you. I know all we can really do is offer words of support, listen to you and acknowledge your situation but we'll always be here for that. So if you like, express all you want and be as repetitive as you want, your words will always be heard and known. I think we're all learning lots from your experiences and we need to be informed.
we love you and we're here! be strong! or be weak! doesnt matter, you wont be alone through this
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