Perfection Was Bad This Time

“You have an abnormality in your visual field. There is either a problem with your retina or your brain. I need to put these drops in so I can scan your eyes and tell you which.”

I can’t imagine what it’s like to have to sit down in front of a 20 year old and subtly suggest that they may have a brain injury. I feel sorry for the guy who, about half an hour after saying the above words to me as I decided I was going to rip out my central line and leave the hospital (I still can’t even walk) because nobody was including me in my care and I felt like a number in a bed and was sure I was well enough, had to sit in front of me again and say “Your retinas are fine.”

Weird vision thing is not harmless, and is all apparently very easily explained by the huge headache I had around the time I lost consciousness at the start of this admission. My brain is now not processing information from my left visual field in one eye, which you’d think would be more noticeable. It is also struggling to process images in time and I’m seeing double. 

Dr Holler was the one who initiated all of the investigations. He came back around the ICU again this morning and went over my history again, as another ICU doctor had done a few minutes before him. I said this admission had been messy and my IV access was extremely difficult. 

“Oh I know, I was there when they were trying not to get lines into you.” He said. And it was just him, so I mentioned my vision. He waved his finger about in front of my eyes and frowned 

“That’s almost like a nystagmus (twitching of the eye – Google it).” He muttered to himself.

“Tell me when you can see me wiggling my fingers” … “You can’t see that? This here, you can’t see it? When do you start to see it?”

“Is this normal for you? When did it all start?” I tell him right after the headache, that since then I can’t focus my eyes on anything unless it is completely still and even moving my eyes makes the world turn to double vision. He waves his hand around in front of me again and makes me follow his biro with my eyes over and over.

“Can you read the name of the author of this AWFUL book?” He asks, holding up my book. We laugh. I tell him if he holds it still, yes. I expect him not to take it seriously but he looks rather concerned at my inability to really see.

“I need to get an ophthalmologist to look at you.” He says, “the trouble with eye doctors is that they don’t have a lot of medical knowledge and the trouble with medical doctors is that they don’t know a lot about eyes.” 

He looks at how swollen I am, and we discuss the fluid retention, “I’m inclined to give you something to help you shift all that extra fluid, but not with low potassium.” He looks up at the IV potassium dripping into my line. He says he’s glad the other consultant is calling London because it means he doesn’t have to, and as soon as he leaves in walks my fellow third wheel.

London are phoned and have no ideas. There plan is for me to stay in this ICU and stabilise me here. I hate this plan. I had been hoping they would persuade these guys to just discharge me, but no. I instantly email them and beg them to somehow just persuade someone to discharge me, I don’t care about the consequences. My fellow third wheel sits and patiently talks me into a calmer state of mind, his words gently wiping the tears from my eyes.

Less than half an hour later I am on my way down to the eye clinic with two nurses. I expect the doctor there to dismiss my vision issues because even I admit they sound weird. But he doesn’t. He orders scans of my eyes. I hate eye drops and they do the vision field test and it completely disorientates me. For some reason I burst into tears. I am done. I am in the verge of a freak out. The Italian male nurse who is with us understands, but it is my fellow third wheel who is amazing. I grab for him a little as he puts his hand on my shoulder and just gently runs his thumb backward and forwards, holding my hand too through the entire thing and instantly calming me down. I apologise a lot. He tells me off yet again. I feel all the feels. 

Then they want to put drops in my eyes. I cry again, I want to leave. I am suddenly so done with hospitals and I want to go somewhere a little less than 100 miles from everyone and everything I’ve ever known. I feel bullied into going along with things, I am not asked what do, I am told like a child and I have had enough. The nurse compares me to a baby and that is it. My fellow their wheel holds me. He crouches next to me a little. They go and get the doctor and tell me he has to be in surgery for  1pm. I ask him if he really needs the scan, if I really need the drops. Over and over again I ask to leave, I say I just want to go home. He looks like our old deputy head of sixth form, even dresses the same (my third wheel and I both agree). And then he says it:

“You have an abnormality in your visual field. There is either a problem with your retina or your brain. I need to put these drops in so I can scan your eyes and tell you which. You may need further investigation from the intensive care doctors.”

I agree, now that someone has taken the time to explain. He puts in the drops and my pupils dilate and my vision becomes a complete blur. The nurse wheels me into the room for a retinal scan. It comes back normal. For once a normal result isn’t good. I would have preferred an eye problem. Suddenly the guy looks very serious.

“You said you had a headache when you were admitted. You held the back of your head…” He tells me he has spoken to the intensive care consultant and his boss a fancy eye guy and very gently says I need a scan of my brain because they feel the issue is in my brain. I’m not stupid. I suddenly remember a lecture on visual fields but denial smothers my freak out. He tries to pull me out of it. I say I want to go home and the nurse misunderstands and says 

“See everything is fine it was nothing.” Gently he says there is a shadow in my visual field and due to the other symptoms I experienced and my presentation I need a scan of my brain because my eyes are fine. 

“So it’s fine then.” I say. My fellow third wheel looks at me,

“You know it isn’t.”

The eye guy very gently and patiently says my eyes are fine but there is a clear abnormality in my visual field. The nurse still doesn’t get it, but I do, long before he says,

“Your brain isn’t processing images properly, so we need to check for any signs of damage or anything else that could cause this problem. We need to know what is causing it.” And as he walks off it suddenly dawns on me

How do you fix that? Wait… Are you saying this is as good as my vision will ever be ever again?

Damn. It hits me like a train.

And my fellow third wheel is right there on the tracks to pick up the pieces. He sits with me when I’m taken back up to my bed on the ICU (apparently in too unstable to be managed on a ward. I don’t really see how). He tells me his mum asked him if we were a couple and I laugh for some reason, and then awkwardly tell him my own asked the same (this is after another nurse mistakes him for my boyfriend). I tell him he is my rock. He gives me his iPad to watch a film and puts a blanket over me because I’m cold. 

Whoever thought having perfect retinas would be bad news? I don’t want a brain scan. I’m suddenly just so done with being a patient. My fellow third wheel says he will sit and hold both my hands if he can, which I know he won’t be able to. So we talk about what we will order for dinner and then we just sit and he persuades me to ask for things I need, and eventually I am unattached from my IVs for another attempt after starting another medication I used to be on. So now we wait and hope. 

Still, no way but through.


12 thoughts on “Perfection Was Bad This Time

  1. Just want to say, fellow third wheel is amazing. Keep him.
    That is the only good I’m feeling from this post though. It’s a horrible development, and part of me is really hoping they’re wrong and have simply missed an issue with your retinas.
    Stay strong though, this won’t last forever; it WILL NOT last forever. I’m speaking from the experience of brain trauma, it will not last forever.
    Just keep holding on in there my lovely, and keep fighting through it. Rooting for you all the way!

    Liked by 2 people

    • He’s beyond amazing haha

      I’m just hoping my vision improves. They think I’ve had an oedema in the back of my brain which has affected the area that processes vision. They don’t expect to see it on a scan now but want to make sure it isn’t anything more sinister. Not going to lie, I’m terrified of my body right now

      Liked by 1 person

      • They can do amazing things nowadays. If it is an oedema, fingers crossed medication (even more of the stuff) should be able to reduce the free fluid which will hopefully reduce the impact on your sight. Chin up my lovely 🙂 They’ll take good care of you
        I really don’t blame you for being terrified though. You are being so strong and so amazing throughout this whole ordeal, and you are most certainly allowed to be scared. But just remember, it’s not going to last forever. You will be discharged one day, and you’ll have days like you did in Norfolk again, many many more days like them x

        Liked by 1 person

      • Thankfully the oedema cleared days ago, they think the vision issues are the damage it has left in its wake.

        I have had a small COMPLETE meltdown this evening, which I am probably about to blog about because that seems to be my way of dealing at the moment. Thank you so much for this, you’ve no idea how well timed this was. Hopefully there are many many days like I had at the start of this holiday. It was so amazing. Thank you for making me feel less pathetic for being a little scared, until this comment my shame over it had been eating me alive.

        Liked by 1 person

      • You have nothing to be ashamed of, you really don’t.
        Ah, sorry for misunderstanding that. I stand by what I said though, they can do amazing things now and I’m sure there’ll be something for your vision. You have nothing to be ashamed of though, absolutely nothing: you’re I’m a terrifying and uncertain situation, whatever you’re feeling is perfectly justified! To be fair, if it was anyone else I feel they would not be coping half as well. They don’t have your strength and fight. You are doing amazingly, please remember that x

        Liked by 1 person

    • Thanks, unfortunately the explanation they are going with that fits the clinical picture is a small brain injury in the bit of my brain that processes vision cause by an oedema, which they say explains the headache I had upon admission to the ICU that had me writhing in the bed and trying to hit people. I’ve no idea if they can do anything about it, but my regular team don’t seem to know and aren’t too bothered about this situation anyway.


    • Thank you. At the moment I’m not really sure about anything. I’m frustrated and a little anxious and I think I need time to get my head around things. I feel like blogging out all my thoughts may be a helpful way to do that. Yeah he’s a great friend. Definitely a keeper!


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