Articles

Independence // Chronic Illness Life [CC]

December 12, 2019


Oh my God, migraine I feel like I’m gonna vomit through my eyeballs This kind of pain, actually, it makes me think of, of course, it makes me think of Faith’s knife in season 3 that Buffy then takes and stabs Faith with Whatever, those guys need to just sit in a room really and work out their differences and by sit in a room I clearly mean ‘get it on’ Hello! So This video is a bit different… Is it? Because I feel horrible. I feel terrible. My head is killing me. See, I like to have a schedule. I release my videos two days a week except for Vlogmas, obviously, when it’ll be every single day. But I think it’s important to film even when I feel really rubbish because that’s life, right? The whole idea is that I show you my life as it really is, I want people to know what it’s like having having a disability… maybe I am gonna vomit from down here. I thought I was just going to vomit from the eyeball but… [to offscreen] Changed my mind! I would like the bowl! Thank you! Thank you. [offscreen whisper] you’re welcome! So, I thought I’d have a little sit down chat today. Little talk about… hilariously in most videos people seem to have tea and do the whole tea thing. I have a sick bucket because that’s my life. It’s OK, I will actually edit out any moment where I actually do vomit. Right. Independence is actually what I want to talk to you about today. I have been showing some more vlogs recently that are about my, kind of, “work life” what I do! I go off and I do videos for other people, TV presenting stuff, I do a bit of modelling, I give speeches, that type of thing. A friend of mine, who I’ve known for a really long time, since before I actually became “officially disabled”? said to me after seeing one of these videos, ‘you know that’s so amazing!’ and ‘maybe soon you’ll be able to go to London all by yourself and be independent’ and I was a bit like Mm no. Because that’s just not how it works, that’s not how my life’s going to work. I’m not going to “get better” it’s not like I have an illness that is going to get better and improve I have a disability that has symptoms and the symptoms change so, a bad day: I’m flat on my back in bed can’t lift my head, can’t move, can’t probably can’t stop vomiting, actually. So a good day: I can go out, I can do something, you know, get some work done, do a little edit. I had a great day the other day, actually, we did some editing in bed in the morning, then we went out to the park, we came home, I made dinner, we snuggled on the sofa Excellent, that is a good day. It’s a tiring day but it’s a really good day so that “good day” when I do things, I’m not doing them alone. So I don’t spend a lot of time in the house by myself because it’s not it’s not that safe, bit of a walking disaster zone If I’m left alone I tend to forget my medication even though I have alarms, the alarm goes off I switch the alarm off or I kind of feel sick so then I don’t eat anything, so then I spiral a bit, then I get a really bad blood sugar dip, and then my blood sugar dips too low for me to want to eat anything to properly look after myself so I get’s worse or I just probably injure myself a bit, really, knock into something fall over. So I’ve generally always got someone with me just in the house, they don’t need to be literally next to me, like, Clara’s here or, obviously, Claudia’s here, she lives here or, you know, there’s just someone else around but not ‘they have to be right here this very second’ and then, going out: so we went out to the park, so Claudia drove us to the park because I cannot yet drive, and we went round the park together, and if we stop off and we buy food we go into the shop together and she carries anything that’s heavy, and then we get you know, we pay and then the bags and she helps me pack because… look at these things do you think these can pack at speed? They can’t. And then we drive back home and I make dinner but she’s here, in the room checking I’m OK. You know as long as I’m not too tired and kind of mentally with it so I can use all my little tricks in the kitchen to make sure that I don’t come into contact with anything that’s too hot or spill stuff everywhere A lot of disability rhetoric is around being independent and “independence” is supposed to be this amazing thing that we are all supposed to want and I’m not saying I wouldn’t like to be independent I can’t imagine how amazing it must be when you want something to just get into your car and drive to that place and buy the thing and come back Like… [imitates explosion] I wish I could drive that would be fantastic. I need to pass my driving test need to do that, but even once I have I’m still not going to be able to drive alone, because driving obviously takes a lot of your concentration and energy, and so I will be using all this concentration and energy to get from point A to point B, and then I’ll be at point B and then I will, hopefully, go into the shop and buy the thing that I want – why is this all based around shopping?! I don’t know but it is! Capitalist society! I’ve got the thing and yay! But now I’m really tired so now what? How do I get back home… when I’m at the place and I used my energy to get to the place and to get the thing? I probably have less independence now than I did as a teenager. If we look at independence in terms of being physically able to do things, physically able to go from one place to another *alone* and I don’t know – manage yourself, look after yourself whilst alone? In that sense, I have less independence. However, what I would say that I have learnt is that the term “independent” and “independence” are very different when you have a disability. It takes on a whole new meaning. For me, I feel more independent when I’m in my wheelchair than when I’m on my feet because I can actually move at the pace of a normal human Yeah! Rather than the pace of a slug! A toddler slug! I get to chose where we go now! I might not be able to drive there but I get the choice! I get to boss my wife around! We go where I want to go. We buy what I want to buy. But I – the internet! Which is the most amazing thing ever because I can make my own content and I wish I could make more things! I wish I could write more, I wish I could make more videos at a much faster rate, wish I could – I’ve got all these thoughts and feelings and I want to get them out there and it’s so hard to do! I need to be OK with that because that is the way it is, it’s not actually going to change. I have this fantastic community, really, on the internet where you can talk to people! You guys! I can talk to you! And you can talk can talk to me! And we can have a conversation, and it’s just the two of us, and it doesn’t have to involve other people, I don’t have to be aided, necessarily to do it, and that’s independence. And I can order something from Amazon. If I am so… brainfoggy and just energy depleted, lying on the floor, can’t do anything, UGH! Take away! But while I’m never really going to be able to just take charge of my own physical wellbeing – doing stuff by myself, bringing myself back, being fine and happy with it – while that’s not reasonably going to happen for me, I need someone there, you know, if I’m off to buy clothes because the likelihood I’ll faint is 50/50! And I’d prefer to have someone there who’ll catch me when I fall, rather than just falling and some strangers going ‘Oh!’ Please don’t call an ambulance. Dear God! If I fall over somewhere, don’t call an ambulance because, although ambulance people are amazing and they have really good drugs, they then have to take you to A and E, and A and E is Hell. On. Earth. I have been there too many times. OK? Anything, anything to not go back. So, yeah! Although I’m never going to have that kind of physical ‘yeah, do what I want, go where I want!’ I still have the awesome independence of mind that is the internet. So that’s what this video is saying, in conclusion. Look at me Talking to you, rambling on, saying what I like. There you go. So there you go, I think that’s what independence is. Do you agree? Do you agree that that can be independence? Let me know. Share this video with your friends who may disagree with you or me. Or agree with both of us.

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