Connected To The Disconnect

Even when you have nothing left to give to your health, it still demands everything you have. It demands things of you that you just don’t have any more. Take my type 1 diabetes, for example (without the other tablets and health hiccups and stuff). It fills my day with calculations and ties me to a continuous infusion of medication that I have to adjust and change all the time in order to stay alive, but could also screw up and accidentally kill myself with if I under-/over-medicate. It was never a burden until I had nothing left to give it – I was so young when I was diagnosed that I never remember anything but needles and finger pricks and checking packaging before I eat. But right now I have nothing left to give anything. So everything is sucking the life out of me.

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Yesterday evening – Einstein the insulin pump, changing infusion site, drawing up a new cartridge of insulin, and re-dressing the wounds from the two central lines I had recently (both 1cm apart, and one of which is a little infected)

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This morning – checking my blood sugar levels were low enough for me to fire a new CGM into my arm for the first time in a couple of months, without the thing thinking it had a mechanical error (my blood sugars run so high most monitors just assume they are broken)
I got phobic about putting in a new continuous glucose monitor. It has a spring loaded needle which puts the actual cannula into my arm (attached to a plastic disc about the size of a 50p, which sits on my skin), and I couldn’t push the thing to fire it in. My little brother (who is now taller than me so not really little) was super sweet. He stood there and put his hand over mine and pushed the weird contraption until it fired its needle into my arm. I seem to just be reaching this mental block around my health. I mean, I’ve reached a mental block around everything. But I thought it would clear once I left hospital.

And it isn’t just today and the insertion of a continuous glucose monitor. Yesterday I was sat there, and I looked down and saw this wire snaking out from under my top and sneaking into my pocket, and I realised it looked pretty medical. I realised that when my brain reconnected with some level of emotion, and was unable to cope with my health, being tied to a constant reminder of the huge disconnect between me and my healthy friends was going to… Hurt.

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So I put Einstein in the little hoodie I have that is designed to be used for an iPhone 6. And now he’s kinda a gangster badass insulin pump – a pancreas in my pocket. 

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Oh, meet Albert (top) and Einstein (the insulin pump, bottom) by the way. 10.4 is the lowest blood sugar reading I’ve had for… A very long time. I took a photo so that when I can feel again, I’ll be happy about something.
I have also lost the ability to be able to pick up my phone and message my specialist community nurse, who was amazing while I was in hospital. I agreed to meet her and one of my consultants in a casual, non-serious setting just to talk through how much of a mess I became during this admission and get all my feelings out in the open (I don’t talk about my feelings so it would have been a waste of time anyway) but now the disconnect between me and my health teams is so much greater than before. I put my life in their hands, and they dropped it. Pretty soon I’m going to get angry about that. Pretty soon I’m going to feel let down and worthless and like a piece of dirt who isn’t worth trying for, because of the way they treated me.

Two years ago, I had almost no hair. Due to a medical treatment I’d been given, it all decided to flee my scalp like rats leaving a sinking ship. Wise move, I guess. But I developed a small obsession with wooly hats around the time, because it was winter and I was used to having thick hair to keep my head warm. I bought myself a new wooly hat the other day, and put it on today, just because I found some of my old hat collection and immediately decided I needed to wear a hat. And then I saw myself. And I looked sick. I looked properly sick. Usually there’d have been an emotional response to that sight… But there wasn’t. It was what it was. I stared at the creature in the mirror for a while, and took in the cracked lips so pale that they blended in with skin drained of all colour. I looked at the black shadows around sunken eyes. I just stared. Normally I can never look at that person for long. In a few days, I won’t be able to. But there was no emotion there to stop me this time. So I just stared.

My mum drove my furry rock (dog) and I to some fields and woods at the top of the valley we live on the edge of. 

The drive home – Autumn in the countryside

When I was in hospital all through my teenage years, sometimes I’d escape from my local for the afternoon and we’d walk the dog around there with an IV pump in my backpack. It always induces feelings of such freedom and happiness. It’s refreshing (especially in the cold) not only physically, but mentally.

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This photo occurred, I liked it, so thought I’d share

My mum keeps going on about university, asking me when I’m going to do some work in a tone that says do some work I highly disapprove what do you think you’re doing? I’ve explained to her that I don’t care. I’ve explained to her that my head is a mess, that I can’t even think or feel or anything. She just doesn’t get it. She isn’t happy with me being here. She isn’t happy with me not being at university and she’s pushing and pushing me to go back. She clearly disapproves, and makes her dissaproval clear. She tries to discuss normal stuff with me as if I give a crap. After I’ve told her that I can’t.

And then she let her opinion run riot. She decided to grace me with her thoughts. She has a rally crappy outlook on mental health, in that she seems to think it’s something a person can choose to change. She thinks it is a simple case of thinking more logically or changing your outlook or whatever, which in my opinion rally undermines the severity of it all. So when she turned around and said to me,

You can’t feel anything because you keep telling yourself you can’t. You think that you can’t feel emotion so you can’t. I wasn’t surprised. But I did want to scream. Because there’s no thought in my brain, nothing to think that. I am trying to think and process and trying to force emotion and it just won’t happen. But she went on. She said the issue was my attitude and that I need to change my attitude in order to change my mental health. She thinks that’s how depression works. She thinks I am holding myself back, that I can choose to break out of this emotional void. And my brain was just all how can you even be focussing on that – do you not understand what I’ve been saying to you, can you not see. How can you still push me into thinking uni is a priority when nothing is a priority. I’m so dead, and you’re still stabbing at the corpse of my mind. Why?

And then she asked if she could go there and I didn’t care enough to respond. She started almost attacking me, saying she didn’t understand stuff and that I didn’t seem to take care of myself of manage my health when SHE DOESN’T EVEN LIVE WITH ME. What does she want me to do, set off a flare and notify the press every time I inject or take a tablet or do a calculation? How can she not understand how unable I am to cope, how I have been so unable to cope that I’ve avoided all health environments and professionals for a few months because I just could not cope with it at all. I gave even when I had nothing to give. And now she tells me I didn’t give enough. She questions it. She… Criticises it.

And then she made everything about her. Knowing that I’d just tried to explain that my brain couldn’t cope with anything, she made everything about her. She started saying how difficult the last week had been for her. She told me how, among other emotions, she’s been so angry when I didn’t pick up my phone a week ago (because I was in hospital). She said I had no idea how she felt. And I couldn’t. I just couldn’t. I removed myself from the situation, and managed to get out of the room before the tears came, because she doesn’t deal well with me crying and probably would have got annoyed.

And there it was – not even full emotion, just a tiny snippet of what should have been an emotion (not yet the pain so intense it is almost physical). But I couldn’t handle anything. I couldn’t handle any anything. I walked into my room in the pitch black darkness and fell to my knees, leaning my torso onto my bed kind of like I was about to pray. I sobbed so hard I couldn’t breathe. And this time my brain just shut down to the point that I slept. Immediately. Without remembering drifting into sleep. And for the first time in over a week, I had a dream. I was in a lab at uni, and I woke up and all the lights were off and everyone had left me, and in the darkness that I then woke up in, I actually thought I was trapped in our first floor laboratory. I was still wearing my wooly hat. Three hours had passed. The apathy had settled back in place.

I couldn’t deal with emotion to the point that my brain switched off its entire self. That’s going to be a problem when I start feeling things. I’ll just shut down all over the place.

All day I’ve not replied to uni friends. I can’t. My Fellow Third Wheel is even missing the mark this time (he started off with awesome responses, and said he’ll come and visit me on Tuesday – but I think mum wants me back at uni by then. She seems to care about the work more than me). The only person who gets it is my hospital friend, who escaped from hospital yesterday. We’ve been messaging non-stop. She says the right things. She relates in a way nobody else I know can.

I posted the picture of me walking my dog to social media, with the following caption

“No place I’d rather be”

Empty, lost, still trying to figure out how to feel anything at all, but out of hospital and back with my best bud. Guess it only gets better than here

That’s not me. That’s not who I am. That was written by my emptiness. I guess it was partly a cry for help – my brain desperate for people to know how empty it is so that they’ll back off and leave me alone or help re-fill it. It was me letting people know I’m out of hospital without having to start conversations with them, because I don’t know how to talk. I guess it was me connecting to the disconnect, acknowledging it, putting it out there so that when I don’t reply people know it isn’t personal. Because I know there is a “but”, my brain just can’t reach any point past empty, lost, still trying to figure out how to feel anything at all. And my own mother seems to think I can choose not to be that way any more.

 

Auntie Godmother was quite good. I messaged her to let her know I’m home, and she told me I have to take all the time I need to recover emotionally. I told her about the state of my mind, and said I can’t feel, but I know that when everything hits me, family is going to be very important to me, and could I drop by and see them. She said of course I could, any time, and she said that the way I felt was understandable. I told her I wasn’t even sure if I wanted to go back to uni, but that I couldn’t even think about that because my brain is still all asdfghjkl.

I guess…

Look I don’t even know what this post is, thank you for reading it if you did, my apologies for writing it. I’m trying to figure myself out.

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4 thoughts on “Connected To The Disconnect

  1. Still reading, still thinking about you. I was going to suggest contacting Auntie Godmother! It seems to me that your health is in such crisis that Uni is the last thing you need to be thinking about at the moment. Could you go & stay with Auntie Godmother for a while? I hope you don’t mind me giving my opinion, but I think you need a complete break from everything … everything – forget about anything else, except your health, that’s the most important thing at this moment. Sending sympathy and gentle hugs.

    Liked by 1 person

    • Thank you so much. See now… You can see this, but the woman who made me can’t… Which is y’know… The wrong way round.

      I hadn’t thought of asking that, I’m not entirely sure if it would be fair as people get a bit scared of my health, although she seems to be more understanding about my current situation.

      No I don’t mind you giving your opinion at all, in fact I’m glad you took the time to write it out. It’s helpful. Honestly. Feel free to share any time – the comments I’m getting on here are very helpful at the moment.

      Thank you.

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      • I really don’t know why your Mum is the way she is – maybe there is a story behind it, who knows? However, at the moment it’s about you and this present crisis. As for your lovely sounding Auntie Godmother – you don’t get if you don’t ask! If I was you, I’d ask her and if the answer is ‘sorry no, not at the moment’ then deal with that separately. She may well say yes, most people want to help and like to be asked. If she says yes, then it would give you a chance to completely chill out, without any pressures on you. xx

        Liked by 1 person

      • My mum is just stressed and as sick of this as I am. She hasn’t been involved in my care for four years and I prefer it that way in a way because I like to be in control. I think she’s like it because she cares. Her attitude to mental health is just… No. I’ve no idea where that came from.

        That’s true. I can’t just take me time here in this house. My nephew has been integrated so well and when my brain switches on I’m going to feel like such an outsider and I know that will not help things.

        I’ll ask auntie godmother tomorrow I guess. I can try xx

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