“There’s A Fire But No Fire Brigade”

“You know what for.” I sat in the chair and looked at my new consultant, a specialist nurse sat by my side. This was his response to what do I really need to come into hospital for, what are you going to do?

“But-” The freak out inside of me choked any future attempt at words.

“You aren’t stupid, you know what for. What usually happens?” He said calmly.

“But I don’t feel ill.” I pleaded with him, genuinely meaning it.

“Well you are. Look at these results, you know you are. You need to be admitted.”

Once again I am genuinely astounded by my body. My blood tells truth and my body… Lies? This time, it didn’t give me the call. It didn’t tell me it needed help at all. It just left me, it was leaving me… To what? For days I’ve been saying that I felt so much better, people have been saying that I look so much brighter… And yet my bloods were awful, worse than those that made them decide to keep me in the ICU. And I felt well. Which made my freak out at the thought of being admitted into hospital even worse. For about 40 minutes we went round and round,

“You need to come into hospital”

“You’re too unstable, you’re off the scale… You need to be admitted, you know you do.”

“You need IVs.”

“I don’t understand why you’re so scared.”

“Wouldn’t you rather be safe?” – but hospitals will never feel safe. Not after all that has happened. Last time I was in this situation I was left to die. I think, and say whatever triggers the,

“But we aren’t going to do that, we want to help you. Some general medical staff don’t have a knowledge of this condition…” – That’s exactly what he said to get me to agree to be admitted. It was a specialist ward, they knew. The nurses knew. They didn’t listen to the consultant.

“Shall I make the decision? I will make the decision – let’s admit you now.”

“Ok, you make the call, I don’t want you to feel out of control, ultimately I want you to call it…” And then when I hesitate and am genuinely torn, and the fear wins and I explain that I know my decision is stupid but please could I leave, he’d start the cycle all over again.

And then out of the blue he suddenly said, “Don’t give up on everything you know, don’t lose hope. There’s still hope. Things will change.” I am almost a little insulted that he thinks I have given up, because does he not realise how hard I’ve had to hang on for so long now? If this were a physical thing I had to hold onto, my finger nails would be torn off and my hands raw and bleeding that is how painful and how hard it has been to hold on to something so intent on slipping away. I have not given up… Overall, I have not given up. There have been moments where I have been beaten but I am still here. I did not give in to the grim reaper’s calls to do otherwise. I did not call his name when it was the only word on the tip of my tongue. I cried and I slept and I crumpled in on myself but I did not give up on everything. Look what I did with uni (got an email about the exam I “failed” yesterday and it turns out I GOT A FIRST IN IT!).

“This isn’t the sort of life you should be living. This isn’t a life. We want to help you. Let us help you.” I AM SAT HERE GIVING YOU A CHANCE TO DO THAT AND YOU WON’T. I SAT IN THIS HOSPITAL AND PLEADED WITH YOU TO CHANGE THE PLAN OR DO SOMETHING AND WAS MADE TO FEEL SO SMALL AND STUPID. I am not the barrier here. Just help. Suggest something then, anything. Do something… Or just say you need to call my consultant in London and work with him… Which isn’t doing anything at all because he is equally as stuck right now, although at least he understands the PTSD.

“There’s a fire but no fire brigade” – Nihils, Help Our Souls

On and on they went trying to tell me I was ill and diverting away from the subject and racing back to it, uncomfortable looks on their faces because they didn’t want to let me out of the room. Fair play to them, they really tried. I really tried too. Logic managed to at least be heard for once, and I knew that leaving was stupid. I knew that it was wrong, but logic wasn’t in control, fear was. There were no flashbacks this time, just memories (they are very different, believe me, remembering something is nothing like reliving it). I tried to explain some of the stuff that had happened to me in hospital. I asked them to take more blood samples. They did. In 20 minutes things had become significantly worse and one reading was still unmeasurable. The freak out intensified and I knew then I’d probably die without controlling this. Actually, there was no “probably” about it. I was in trouble and I knew it. But I felt fine. I felt so well. Probably because only one health hiccup was having a major hiccup at that moment, although these bloods did explain the uncontrollable involuntary sleep all the way back from London, from which I woke feeling even less rested and unable to open my eyes more than half way because the air felt like sand paper.

“You need to cancel that holiday to France. You aren’t safe to go. You need to stay here and go to London and see your team there.” He said that and left it, and a few minutes later randomly chimed in to the nurse’s little speech (about how my life wasn’t a life and they just wanted to see young people like me living and doing things a 20 year old should be able to do, not like I am…) with a,

“Look you aren’t going to like this, but if I were you, and I’m not, but if I were… I wouldn’t go on that holiday.” I couldn’t face admitting that, because for a few days I’ve known that too, and suddenly being face to face with my own thoughts in the big wide world where I can’t bury them or prevent them entering my conscious thought was… Difficult, to say the least.

In the end he was trying everything to make me stay, and I just couldn’t. I knew it was unsafe and dangerous, but I couldn’t override the panic in my mind.

“I know what I need to do and what I want to do, and they are polar opposites” I tried to explain,

“And what’s that?”

“I want to run and I need to stay.” At this point we were getting somewhere.

“And what will happen if you go home, if this gets worse will you come back? It’s not going the right way is it, even with the dose we just infused.”

“I… I’m not going to lie to you, I’ll probably give myself IV shots with shorter needles that aren’t designed for that, and desperately keep doing that until it really really isn’t working.”

“Have you done this before? You’re going to do exactly what we would do but here you will be safe and it will be done properly and infused over a set time.” I show him the scars on my hands from where I have hit veins many times.

“See now you’re telling me that and showing me this and you want me to let you leave?” I freak out then, if I were a dog all the fur on my back would have bristled right then, ears alert, nose pointing, eyes darting.

“I’m just trying to be honest with you. I’m being honest because I think it’s much better that way.” – I don’t trust you but I need you to trust me.

“Oh no it is, and I really like that actually.”

“It’s just when I say that I freak out and will do anything and everything and whatever it takes to avoid a hospital or leave a hospital, I mean I freak out.” He seems to slowly be starting to get it, but then almost pleads with me to stay.

“You have to understand how difficult this is for me. You’re a special patient, your case is extremely unique, but that doesn’t mean we have to give up…” He started again with the not giving up thing and I let him ramble on.

So many times I was nearly persuaded to stay. I was being torn apart, between right and wrong, except they were flipped so that right felt wrong and wrong felt more than right. I was fighting with myself, accidentally even groaning in frustration at the fear that was ruling me. I ran my hands through my hair (as best I could, because my hair was a crazy curly ponytail at that point), I slid my hands down my cheeks, I gripped the edge of the chair… I held back tears. Suddenly they came from nowhere, welling in my eyes.

“I don’t like hospitals.” I’ve never been as bad before as I was then, usually I see sense. And there was nothing on earth that could get through the fear then, except maybe a uni parent, but they both lost interest a long time ago.

“Right, so I’ll call the ward and ask them to arrange your admission then.” Was his attempt to conclude the appointment. In response to the terror on my face he said I could have the ultimate call.

“I’d like to go please. Please, I’d just like to get out of here. I don’t want the heart doctor people to get annoyed at me for skipping my appointment tomorrow.” He pulled a face that said he wasn’t happy with that option.

“Can you redo my bloods? If I really need to stay I’ll have to find a way.” I gulped back the warmth of fresh tears that arrived at the very thought of this. My bloods were no worse. He said we should give the same amount of medication again, but I suggested more than double the dose he was recommending. He was shocked, and alarmed, and said I would get very unwell. I laughed. He clearly hadn’t read my notes.

Somehow he realised that any belief or remote trace of support I had felt in him was gone, he knew he was fighting a losing battle. Logic was desperately trying to get me to stay, logic had me rooted in the chair, clinging to the seat to fight the urge to run away that was powered by fear and PTSD. The nurse was much more understanding. She got it.

“After the appointment, can I call you, and we’ll have another review of your bloods, and if  there’s been no significant improvement then I need to know you will come back here and be admitted. And then I’ll se you on Monday.” MONDAY???!?!?!?! I’m not staying all weekend without you present, nobody will stick to the plan that you refuse to make, you won’t even confirm that I will leave on Monday you say you don’t know how long it will take and I HAVE AN EXAM NEXT THURSDAY. NOPE. NOPE. NOPE. NOPE.

I freaked out almost as much at that as I did when the nurse sniffed the medication we had infused (subcutaneously) to check it wasn’t plain old water or saline. I left, and my dad was irritated by the waiting and didn’t understand anything about this health hiccup.

Apparently I may only feel so well because I’m used to multiple health hiccups… Hiccuping at the same time. How weird that I was slowly dying and had not felt so alive and bright for a long time? How terrifying. This body is scaring me now. I want a service dog, an alert dog. An alert dog would have know. Stuff my parent’s objections, I won’t be living with them. I need to save my own butt. I feel like I need to fight this alone. I am the only person who consistently sees a point in trying to save my life.

“Trust the fire not the fire brigade” – Nihils, Help Our Souls

This doctor this afternoon was horrified that I had started using Bob Jr. but I had more knowledge than even him on how to use Bob Jr. He told me off for not including my healthcare team and working against them. But they made me feel that way first. They let me down so many times and left me for dead VERY LITERALLY, and they are luckky I’m alive. My London consultant for that health hiccup (who I see most regularly about it) has apologised so many times, he has called it disgusting and said it should happen to nobody (after I said I was glad it was me and not anybody else who didn’t deserve it). They refused to get involved when I was in an ICU in Norfolk the other week. My bloods today were worse than when I stopped in A&E in Ipswich on the way home and they wanted to rush me into resus (but I discharged myself)… They left me. I cannot depend on them again. I can’t take it. But I will.

I am currently flying way too close to the sun, and I want nothing more than to overcome my fear of standing on the earth. Icarus has regrets. Icarus is annoyed. Icarus is the best metaphor to describe me.

But I will not fall. I hugged my dog even more than usual when he ran to meet me upon my return. And I will hold him a little tighter tonight, because I won’t sleep at all.

No way but through.

I’ve been stumbling round between lines of red and blue

I was colouring thoughts for the sake of finding truth,
Was following rules
Counting all of my good deeds
Living in fear, hell at my feet
Heaven is out of reach
And there’s a fire that I once laid
There’s a fire but no fire brigade
Help our souls tonight
We are losing, losing this fight
Help our souls tonight
Is there no-one on our side?
Who’s gonna help our souls tonight?
No-one here to 
Help our souls tonight
It’s on me, it’s on you to survive
And with the rising sun
I rose from ash and dust
I finally saw the world for what it was
The good and the bad, they were part of one
No matter how hard I tried to run
It’s always darkest before the dawn
Believe it ‘cause you know it’s inside you
Trust the fire not the fire brigade
…” – Nihils, Help Our Souls

 

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6 thoughts on ““There’s A Fire But No Fire Brigade”

  1. Is home health care, where a nurse will come to your house and administer an IV treatment, not a thing there? It seems like an in between of what you and the doctors want, and would maybe help you feel more in control. In the US, where insurance coverage governs what we do/do not routinely do medically, it is fairly common because it is less expensive here than hospital care.

    Liked by 1 person

    • It is and has actually been discussed before a while back but THAT IS SUCH A GOOD IDEA! I hadn’t even thought of bringing it up again! I think one of the things I need has to be given intravenously in hospital though because of how sensitive the body is to it and how quickly deteriorations happen when I’m on it 😕. It’s an infusion that can go wrong quickly and needs regular blood checks of electrolytes and other stuff to make sure my body is all good… But I will try! Honestly thank you, I was too busy feeling to think! What a great suggestion!

      Liked by 1 person

      • You’re welcome! I hope they can sort something out for you.

        Another thing they have here is infusion centers, often connected to the hospital. You go for the infusion, stay as long as needed for them to observe you, they can take blood whenever they need to, then you can leave (the one I go to is open 6AM-4PM). If that’s an option, they could keep a closer eye on you and check your blood as you go, but you could still go home at the end of the day. With your PTSD, it sounds like being at a hospital at all is awful regardless of the reason, so I am not sure that this idea is helpful.

        Liked by 1 person

      • Your last sentence was completely awesome because you totally get the fact that PTSD terrifies me out of these things. It made me shout YES at my phone 😂.

        Unfortunately they wouldn’t know how long I would be on the infusion for, it’s usually at least 24 hours, and goes on continuously to keep me alive until my body no longer needs it and can human for itself, which can be days, weeks… So this makes things complicated.

        I think I’ve given up on finding an answer or a solution and actually it’s made me so hopeful and happy and content. I’m not sure if that makes sense just in a sentence but I will of course turn it into a post on the topic. Acceptance kind of helped me let it all go. Now I just want to push my body to its physical limits until I find something it will still let me do!

        Liked by 1 person

      • I just read your post on acceptance. I won’t lie to you; I am worried about your decision. However, it’s just that. It’s YOUR decision. I am happy you’re feeling at peace with things. The sense of renewed vigor for life you feel at the thought of swimming really comes through in your post, and it’s great you’re willing to consider doing things you used to love, just differently. I love your determination.

        Doing things less intensely than I used to is something I’ve struggled with too. I would think: if I can’t do it how I used to, then what was the point? I didn’t think I could feel fulfilled by doing something 5% as well as I used to. If I couldn’t do something to perfection, what’s the point and how can I be okay with not doing something as well as I know I am capable? Early on, my stubbornness to listen to my body landed me in ERs or with a stay at the hospital. I am still learning, but after 8.5 years, I have gotten much better at respecting my body. I actually find I can do more if I pace than I could if I tried doing it how I used to. I also find that even if my end result isn’t as good as what I could reach when I was healthy, I am putting in WAY more effort, and that’s something I am proud of.

        I am glad to hear it feels like I understand your PTSD – you do a good job communicating what it entails, which is partly why I was able to come to the conclusion any time at the hospital is a deal breaker!

        Liked by 1 person

      • Doing things less intensely is going to be extremely difficult for me too, but the thought of being able to potentially swim another time if I take it easy on one occasion will really help I think. I’d do anything to keep swimming after I start and I want to go about the whole thing in the safest and most sensible way possible. I have to admit I’m extremely wary about trying to swim but I need to get this out of my system one way or another and in my mind it is completely worth taking a small risk. There will always be a temptation to push myself when I’m in a pool but I really do want to be sensible about this and am set on just taking it slow.

        I explain my PTSD in these ways to a lot of people and they usually judge me or look at me like I’m ridiculous and keep me in hospital with no idea what they are doing to me emotionally, so actually your reaction to the mention of it in these posts was pretty awesome! Thanks!

        Liked by 1 person

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