Just here to vent

minka72

Hi, just head to vent so I don’t go insane. I get vistibular migraines where I mainly get really dizzy and can’t walk or even sit up for days at a time usually about 3-5 days every 8 weeks or so. But lately they’ve been coming more often and if I don’t express this somewhere I’m going to lose it at some poor unfortunate soul who does not deserve to be yelled at. So….

Here is the truth. The awful terrible shameful truth. I hate being disabled. I hate even saying the word. I hate even thinking it. I hate getting dizzy and not being able to walk and not knowing when it will come. 

And I hate telling people about it. I hate telling them I get migraines. I hate explaining that I have to have disability accomodations. Most of all I hate when a migraine affects my life and I have to cancel on people and tell them I can’t make it. Again. It makes me feel embarrassed and ashamed and like I’m making excuses or making it up or lying even though I’m not. Even though it’s real and not my fault and there’s nothing I can do about it. 

I hate my body sometimes. For doing this to me. For not just working like it’s supposed to. Like everyone else’s does. It is frustrating. Sometimes it makes me so angry it’s all I can do not to scream with the force of it. 

It is not fair. And saying that feels stupid. Even thinking it feels stupid. Because life’s not fair and I just have to live with it and manage it and work with it as best I can and I know that. And still. It’s not fair. And I hate that it’s not. 

I hate when people are sympathetic. I hate when they’re casual. There is no reaction that I do not hate. 

And I hate that I hate it. I hate the feeling of awkwardness and shame that thinking I’m disabled invokes. I hate that I’m not okay with telling people. I hate having to deal with peoples reactions once the eg know because can’t I just tell people in casual conversation when I first meet them a get it out of the way without it being a thing? Or a big deal or a sign of emotional intimacy? It’s as a much a part of my life as being a uni student or liking kayaking or going to the gym and can’t it be told with the same amount of casual small talk esque? I’m not trauma dumping or unloading or being vulnerable it’s just a fact. Why can’t it just be accepted as another fact? 

I hat the fact that sometimes I feel like an imposter. It’s a migraine. And it’s transient so is it even a real disability? Am I even disabled? Yes. The answer is yes. I know the answer is yes. So why doesn’t it always feel like the answer is yes? Why do I feel like I’m whinging or exaggerating or lying when I say this? 

I hate that I can’t complain without it being a thing. No actually it’s not fine and it sucks but if I tell you this you’ll feel the need to sympathise or offer advice and I don’t want any of that. I just want to be able to not act like I’m okay with it sometimes because I don’t want to have to pretend that I am without it being a big deal. Because it’s not, not really. It’s just my life. 

And I hate when people try to help without being asked. Or even offer. I’ve been disabled for years. I know what I need and what I can do and how to manage it and if I need help I will ask. I do not need  you to look after me. I’m a grown adult who knows how to look after herself. 

I hate the expectation of pride. Disability pride activism against ablism whoooooo.  It’s a pretty ideal. But I don’t feel it. I can occasionally feel good about how I’ve made my life work despite this. But mostly I’m just angry and feels **** about it. at best resigned. And I hate the way this doesn’t feel like an acceptable way to be. Like it’s something I need to fix. Because it does suck and why should I have to be okay with that? Being angry and annoyed about it isn’t actually going to mean I can’t live my life or be happy. I can be angry about being disabled and still a generally happy person who enjoys their life. Both those things can be true. It should be be something I have to fix. Or am expected to fix or feel like I need to fix just to reach some societal ideal of disability pride. Just because that would make it easier for other people if they didn’t have to deal with my being upset about it. 

I hate everything about it. And it’s awful and frustrating and I would give nearly anything to make it stop. And I cant. And I hate that too  

woodbine

@minka72 hi and welcome to scope, out daughter used to get shocking regular migraines her GP put her on daily meds and she hasn't had one since, I cant remember what they are but we aren't allowed to discuss meds on here but might be worth asking?

Sandy_123

Hi @minka72 vent away, I second that your gp may have something you could try. 

Hannah_Alumni

Welcome to the community @minka72 you vent away! Having a disability sucks (to put it lightly!).

I am so sorry you have been so unwell. I hope you are able to find something soon to help with the pain.

I know many members have days where like you where you just need to word vomit everything out. If you do feel like those days get more frequent. I would encourage you to look at NHS talking therapies. Something you can refer yourself to at any point. They can even host appointments online if that suits you better with the migraines. 

I hope the community can continue to be a place of support and friendship for you