Enough

The consultant in charge of the ward walks in to see me with one of his henchmen (another doctor). He says the ward sister will be joining us and pulls the curtain as if this will stop the noise. Dread fills me from my toes (I was so tempted to write distal phalanges but… Oh wait I just have) to my cranium. I brace myself for the impact of miscalculated words as he says my specialist nurse has raised concerns about my emotional wellbeing. I try
and fail to explain myself. I tell him about the repeated cycle and that people keep saying it is going to kill me and that in this moment I can’t stand the thought of going through it again, which is stupid and horrendously ungrateful, but a thing I don’t seem to be able to control. I tell him that the team here told me it was negative to think of a recurrence of this situation as an inevitability, that it is realistic. He understands that. He says this is an unusual circumstance that they probably don’t know how to tackle, and that isn’t my fault, even though I feel like it is, like I am doing something wrong. 

“There is nothing I can do to fix this, but please, if there is anything at all we can do for you please tell me. If you need any help just ask. I’ll do anything I can.” I am immediately caught off guard, disarmed, relieved… All in one moment. 

We start to talk, slowly, about how often I am in hospital. He totally understands why. Understands the inevitability. I very briefly mention the PTSD. I say again that doctors don’t understand and try to save my butt using conventional treatment methods that mean I just keep bouncing back into hospital.

“I… We understand. Obviously I cannot say we understand fully, I’ve only met you on this admission and this is not an ordinary situation, but we understand that this doesn’t happen because you let it happen, it happens because nobody can stop it. You’ve been through and awful lot. If we can make this easier for you in any way please just tell us how.” WHERE HAVE YOU BEEN ALL OF MY LIFE? I sit in a stunned silence. We talk about my reluctance to get help, my shame, but mostly the reactions of A&E staff and paramedics, who occasionally think I’m unconscious because I’ve taken drugs, or seem to think I had some control about how unwell I got and just don’t care about looking after myself.

“You’re right there is a stereotype around young people and unfortunately you’re still young enough to be caught up in it.” The sister says. The doctor sighs,

“Unfortunately there are usual circumstances which doctors become very used to seeing. They will initially jump to conclusions. This is very complex and rare. They do not understand this situation like we do.” We talk about getting my consultant to make a plan (which was ignored when he tried this before) and write a letter to explain the complexities of the issue which I can carry with me,

“Yes, that will be good, and then she may have the confidence to go to hospital sooner if she can just hand them a letter so they too understand what they are dealing with. Any doctor will know what is going on from what they see before them, they need to know why. They need to know how not to try and deal with it.” He talks about me in third person, thinking out loud. His henchman surprises me by speaking up in support of the idea. They agree it was a good one of me to suggest.

We talk everything through calmly, I am too defeated to freak out. I feel nothing. I am hollow. I am incapable of any emotion and yet I feel the tears brewing again. He leads the conversation, bringing up different areas which may be problematic and things he thinks need to happen. I quietly, robotically, monotonously respond. He calmly, gently, compassionately continues to talk after each pause. He doesn’t think I am stupid or pathetic, in fact they all seem to think my shameful defeated state is justified. They seem to think I’ve been through a lot of difficult stuff.

He asks me if I am happy with the care this hospital and these doctors are giving me, and how he can improve it, acknowledging the fact that he won’t take it personally and that there are shortfallings sometimes. He also asks where my main care for this health hiccup is based. I tell him London.

We talk about how this hospital and London don’t talk so both tell me different things and these guys seem annoyed if I do what the other says. He says that needs to stop, and he will get the two teams to talk to each other and start communicating, even though the consultant I saw this morning knows my London consultant and expects to bump into him at a conference tomorrow where he will discuss my case (if not, he will call him on Monday. Monday. Is so. Far. Away).

He says while I am in Kent I can’t just be let out of the hospital and left for London to deal with – he wants a district nurse from this health trust to see me once a week (usually associated with elderly patients he admits, but he feels it may be necessary); he says I need better community care from this hospital, more support. He says a district nurse will notice signs of deterioration when I might not, and I may be able to seek help quicker and it may give me more of a chance at evading the grim reaper. He says I need more regular appointments here while I’m not in London – weekly or two weekly. He says I should have a lot of support in managing this health hiccup, especially as it is so complex and deteriorates so rapidly and uncontrollably, taking other health hiccups on the downward spiral it plunges me into. He says he wants to try and reduce my number of hospital admissions.

He totally gets the PTSD. They all do. They are kind about it. They are sympathetic in a non-patronising way. There is a sadness in the eyes I look at, the same helplessness that lies within my own. He says while I am here (as in, an inpatient) I need help to deal with the consequences of that (PTSD).

I apologise again for being so pathetic. They all seem outraged at the idea that I feel that way. The consultant guy protests, the henchman shakes his head furiously, the ward sister says,

“This isn’t pathetic at all, you’ve been through so much.”

“You’re going through so much more than most would cope with.” Another voice says. At some point somebody says,

“You’ve been through enough.” That last word. Enough. I like that word choice. It means finality. It means it is time for it all to stop. It means someone else wants to put an end to this. It means change. Enough.

And then the sister mentions the IV access issue. The line issue. I tell them I don’t want to argue or fight for one, that I give up. The main doctor guy says he can’t do anything about it, but that he thinks I should discuss it all with my consultant here who can act upon it. I tell him I sort of did, although I’m confused as to who my consultant is. We talk through my access issues. The central lines they abandon putting in and try to put in another side or another area, the hours of stabbing while the drugs they need to infuse sit beside me mocking us all. He says he can see why somebody might not want to put a line in me, but that the positives and the negatives have to be assessed and discussed thoroughly. I say I didn’t feel that was possible, and that I now see no point, because I don’t. He says access is a huge issue. 

I don’t want needles drilled into my bone. I tell him what the other consultant specialising in this health hiccup told me this morning, and that it isn’t as simple as he made out. I say I feel like nobody listens. They all understand. He says it must be incredibly frustrating. I say they won’t get many more lines into my femoral vein and definitely not my neck (they now always fail), he nods. I say I’m scared about what happens then, that I don’t want to die while looking at the medication that could save my life if they could get it into my vein. A fresh wave of hopelessness washes over me. My voice returns to a quiet monotone.

He is patient. He is kind. He kneels on the floor the whole time he is talking and I see him shift his weight and wince with the discomfort. He isn’t patronising or condescending. He doesn’t care because he’s paid to care, he cares because the situation I am in bothers him and he wants to fix it because he has managed to retain his humanity. Over and over again he tells me not to apologise. He understands. He actually understands how traumatic it is for me to be here and that when I leave and the flashbacks reduce in frequency, the freak out will stop and I will think more clearly. 

He is calm. He gently asks questions about issues he thinks need to be addressed (but can personally do nothing about other than to give his colleagues a shove towards resolving them) and he listens to the answers. And then I am fighting back tears of gratitude. It is the most helpful conversation I’ve had since my old consultant for this particular health hiccup at another London hospital. I feel listened to. They care. They don’t make me feel stupid and they are deeply sorry that I’ve been made to feel so, and that I feel like I am a nuisance. I waited so long for this. He listened. They listened. 

But it is too little too late.

I am gone. There is, at that moment, nothing left of me to save (and I hate myself for being so pathetic).

“Oh my dance is getting slower now,

Cause my years they’re getting older now,

And my eyes, they won’t cry.

My tears have all run dry…


Will you please believe

I’m not the person you see,

I left that body long ago.

I left it way back there.

Will you please believe,

Given all that you see,

I left that body long ago

But somehow nobody knows.” – Amy McDonald, Left That Body Long Ago

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18 thoughts on “Enough

    • Thank you so much, I really don’t feel like one now though. I feel pretty ungrateful and ridiculous because it could be worse… The frustrating thing is that I’ve had to text my team in London because they didn’t even know I was here, and they are the people who manage my care! You made me feel less alone in all of this with that comment, thank you, means a lot x

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      • Stop beating yourself up, there is nothing to be gained. You’ll just make yourself more miserable which will make you feel physically worse and it won’t ever change anything. Your body being a jerk is not your fault, it sounds like there are now staff who see that it’s a bit of a medical marvel too and i believe that their change in attitude will filter down. I know it’s nothing compared to you but when i was in for a laparoscopy (pre-ehlers danlos diagnosis) no one would help me with anything despite the fact that had been dragging me around, unconscious by my very hyper mobile hips! I got upset for a while, then i got mad and frustration is far more productive! I’ve ordered leaflets on my condition for when i see a new medical professional (you might need to make your own) but i am determined not to be treated like that again… I sense you’re feeling the same šŸ˜Š x

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      • The funny thing is they know what is going on, they’ve been told, they understand(ish). They just don’t know how to manage it and won’t talk to the team that have finally come up with ideas how to. I seem to have beaten myself to a pulp over this, you’re right that it doesn’t change anything. The general medical doctors know everything because they are the ones that sat down with me and had the huge chat earlier. The team in this hospital that specialise in this area can’t accept that they can’t stop this from plunging me into near death situations and get frustrated when I explain that I’ve tried their ideas with my London consultant and explain how it didn’t work. They are out of their depth basically, and somehow I’ve been made to feel like that is my fault. The leaflet thing is such a good idea! I made a page trying to summarise my most disastrous health hiccups but I think detail may be helpful. I’m going to get my consultant in London to write me a letter explaining it that I can just bring with me to hospital, but I really like the idea of a leaflet, thanks!

        I think I’m past the stage of any emotion, I’ve felt most of them this morning and now just an emptiness. It was the slow realisation that my life is very much at risk, and my body is now a ticking time-bomb until the next time, and nobody can defuse it. I just hate the uncertainty of waiting. I was scared, not of dying really… I don’t know what of. But I prefer the emptiness. It’s less traumatic. At least I can sleep in its presence x

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  1. Have you seen a psychologist or anything about it? I mean, not about your health problems (obviously with PTSD you will have) in a way to manage them but a way to manage your feeling of being a ticking time-bomb and to try and manage your thoughts surrounding your illness? Again, absolutely not the same thing but I’m going to speak to a pain psychologist called… wait for it… Kathy Kindness. My condition is my no means life threatening but I do get the same feeling of worry and isolation and I’m really hoping that she can help me look at things in a more positive way – even when it really freakin’ hurts! Might be a totally stupid thing to mention but no one ever teaches you how to deal with suffering, maybe everyone with chronic illness needs some help šŸ™‚ x

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    • Haha is that her actual name? Made me laugh when I read that, didn’t really think that was possible right now so congratulations! I see a psychologist who deals with people who have one of my particular health hiccups (to deal with the emotions physical health can kick up and help me through the difficulties of it all). I was seeing her weekly, then I felt like a bother and didn’t find it helpful and stopped (I also stopped going to all my other appointments for a short while, but I did drag her to my appointment last week with the consultant I kinda need right now). Now I wish I could run back to London and talk. The guy here has offered me support from the psychiatry team when I’m in hospital here in the future just to deal with my PTSD kicking off, and also potentially when I’m out of hospital to process all the difficult health rubbish that is going on at the minute and the crappiness of the things I’m about to go through. I may accept… Ok I’m still laughing about Kathy Kindness haha! It isn’t a stupid thing to suggest at all, far from it actually. I just never find it helpful because I’m awful at talking to real life people unless it’s through a screen like this haha x

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      • I have an e-mail address in my “Say Hi!” page, if chatting to screen people helps šŸ™‚ If I’ve learnt anything in the past few years it’s that all of the professionals are harder to talk to because they are being professional. I have chronic happy face and like to make a joke out of everything and they just can’t communicate like that but most of them will have kids or siblings who they would hate to see in your position and they really do want to help you – just in a clinical, unnatural way. It sounds like you’re in a bit of a rut just now. Have you got a good book or something? I am the worst person in the world for not wanting to do anything when I feel like ass but even reading a good book helps give a day some purpose šŸ™‚ x

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      • I’ll definitely say hi via email then at some point, if that’s ok with you? I was completely disheartened by the discussions that I tried to have. I was spoken down to like a naughty child and didn’t much appreciate the attitude directed towards me. Right now I’m very much on the edge – of what I’m not quite sure. I don’t cry and yet for the last half hour (and even while they took out my femoral line) I just stared into space and cried and cried. Hopelessness, but more than that, frustration I think. I genuinely don’t know what to do with myself. It’s been a long time since I’ve felt anything close to this. I’d prefer to return to being emotionally numb. I don’t want to feel any more x

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      • Thanks šŸ˜Š hugs to you too! I’ve managed to find freedom, am back with my dog. Thank you so much for earlier, I will email you when my phone decides it wants to “connect to server” x

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  2. Thanks for sharing. I have so many doctor’s, for so many different illnesses, medical and mental………………….I’m always getting pushed around in a big circle. I call the GI doctor about a GI issue, and I’m told to call my primary care doctor, of which I’m not going to to because she’ll tell me to, and rightfully so, call the GI doctor. He put the feeding tube in and he should be the one following my care with that issue. These doctor’s will do procedures and surgeries all day long, but want nothing to do with the follow up care.
    I like the idea about the doctor writing a letter that you can present each time you show up in the ER or another doctor’s office. Only, I’m thinking, getting one of my doctor’s to do that would be “too much” for them. So, I think I may just write my own letter and have everything, in great detail, all lined out and explained. This way, I can walk in, hand them the letter, and they can do what they need or choose to do. When in such pain, it’s hard to think of everything, right now…………I tend to forget to tell them a lot of things. Thanks so much for sharing. you’re a true inspiration to me…………I, too, suffer from PTSD. I understand what you’re saying, here. Take care. I wish you the best on your journey. Peace out! šŸ™‚

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    • An inspiration? That’s so kind of you to say but I honestly fail to see how that word can be associated with myself. I’m actually really touched by that… I’m not sure how to respond. As with the letter idea… I’ve tried writing a letter myself, just briefly summarising things, but it was extremely difficult and holds less impact coming from the patient. Maybe add your specialists’ phone numbers too so they can back you up and be informed of needed? I’m considering doing the same. Sounds like you’ve been led on quite a song and dance. My consultant for this health hiccup in London is finally willing to try to save my butt, but can’t do anything if he isn’t consulted. It has been a difficult day for me, but a new one will begin tomorrow. Thanks for the comment and such kind words, means more than most would realise. Sorry to hear that life has given you reason to understand, but relived not to be so isolated and misunderstood. Good luck with everything!

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      • You’re an inspiration to me because I understand a lot of what you’re saying and going through. Our diagnoses may be different, but I get it. You’re still here. You’re still fighting the fight. I, too, feel like giving up many times and I mean MANY. It’s frustrating living life this way. So, for what you go through, which is NOT easy……….one can only truly understand this if they’ve gone through it or are going through it. I am. This makes you an inspiration to me…….Just know I care and truly understand. I’m here, if you ever want to talk or just need to vent. I hope tomorrow is “better” for you. Hang in there. You’re stronger than you know. I can see your strength in what you write………….because I’m right there with you…………….I get it!!!! I’m so sorry, you have to go through all this shit, it is a lot! HUGS

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      • Thanks, that’s so nice of you to say, the same goes to you if you ever want someone to talk to. I have it so easy compared to a lot of people which is why I get so frustrated at myself. I just don’t even… I feel I should write a post to explain the rest of my day… Maybe I will do that now… Hugs received and returned by the way šŸ˜Š thank you

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      • Don’t we all! I usually get worked up a little (nowhere near like I have been today) and get a grip pretty quickly. But today I can’t get out of the rut I’m stuck in. If ever you’re in the same situation and need someone to help drag you out… I’m here (hopefully)

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      • You may be sorry………………lol lol lol It usually takes me awhile to pull myself out of it, but with meditation, I get back to reality pretty quickly, but I am a bit of a rebel and sometimes, I don’t always practice what I preach. The preaching is the easy part, ya know? šŸ™‚

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