I should be in hospital, but…

At 05.00 this morning, after a sleepless 3 nights but otherwise feeling OK, I had a nice, ripe, nectarine. It didn’t bounce back, or go straight through me, and I relaxed and slept for a whole 2 hours. Woke up with a 15-pint hangover. Happens every time I sleep lately, which is a serious disincentive.

At times like that – I can deal with pain if I must, but not extreme, unending, nausea, it has me totally unmanned – just one thought goes round in my brain like a demented lab-rat in a maze.

I want to die.

Not a suicide threat, nor am I looking for sympathy, but it would be sooo good just not to wake up one morning if this is all there is – and I’m seeing no evidence of anything else.

And I agree, I really should be in hospital.

At the moment I’ve reached an accommodation with sleepless nights – I read, and sleep when I can in the day. If I thought hospital could improve on that, I wouldn’t hesitate.

However, 2 years ago, after around 100 hours totally deprived of sleep or even meaningful rest, Arrowe Park managed to tip me most of the way into a breakdown. They also, through staggering incompetence, damned near killed me. See this post and the subsequent couple.

I won’t willingly give them another chance at me.

There’s also the problem that I would need my powerchair in there, and I can’t see how I can do that (they don’t have room in an ambulance**). Thing is, my bathroom is 90 seconds away – in APH it’s way too far without wheels and, anyway, sometimes 90 seconds is too long (don’t even think about bedpans!).

**And if I made my own way there I wouldn’t get the same level of attention as I would if delivered by ambulance. My manual chair isn’t an option – I’m way too weak.

I know, in theory, there should be someone available to wheel me – or anyone else – to the bathroom; in practice it doesn’t happen. Not in time, anyway.

And last, but by no means least, last time in APH every day was an unending battle to get drugs that had been prescribed, to take my own meds without interference (as long as they know exactly what you’re taking, and when, that’s a legal right), and to fend off unwanted anti-DVT injections every couple of hours (again, my legal right), as I was at no more risk of DVT there than I am here.

I simply don’t have the reserves to deal with level of shit right now and, rightly or wrongly, I feel very strongly that if I wind up in hospital it will not end well.

14 thoughts on “I should be in hospital, but…

  1. I understand all that and also that you must be quite fearful of returning somewhere that has caused you such immense grief but the fact remains you need medical assistance now as a matter of urgency. Ring to get a GP out to you and let them take the decision out of your hands. If you can’t get a GP out and that in itself would be so wrong then call an ambulance. Is there no one, a close friend maybe that could help? Come with you etc? I know you are going to refuse Ron stating all the reasons you have given but the alternative is what? What you are and have been suffering can not continue can it?

    • I’ve got a few days grace, Penny, as I’m waiting for my meds repeat list to be renewed so, if I wind up in hospital, I have my meds for a month at least.

      A year ago, though, I refused a diagnostic heart test that carried a 24% risk of stroke, because there was a safe alternative. You’d think that they’d have gone with the safe option, but no. They did bugger all.

      And that, Penny, is the level of care I can expect if I wind up there again.

      As for friends, long-term illness breeds isolation.

  2. Oohh Ron, I understand and know excactly how your feeling, and how long you have been trying to get some proper help/answers to problems NHS hospital/doctors/nurses/admin have made you iller! You have been very clear and polite (I think/know) and the system is capable (NHS) of doing what they like because no one complains! Its frightening to make a complaint and if your not strong, they say and do what they like which makes it worse…I have been fighting NHS/System/Justice for over 3 years and it nearly killed me! Dont get me wrong, like you I am very ill as well (many things) some through Doctors/hospitals/nurses…Gives me palpitations when I am writing this now, because THEY have like you fobbed me off, and got away with it! I stayed in a wet bed for 2 weeks, same sheets for 2 months… The nausea is my worst feeling, pain is bad but nausea is worse. You know your diet needs, medicines, illnesses, your not a drunken drug addict (get more help if you was) How many people have to put up with this treatment and die because they dont say anything, are too frightened? I like you would be dead if I didnt question my medication etc., But, like you Ive got nowhere! Go to the papers Ron,go on television, get it in the media, it will help you and others…If you can…Dont give up Ron, fight on a higher level, at least you would get a better responce! I know its easy for me to say, Please try X

  3. I understand completely.
    As a powerchair user, hospital stays are a nightmare. A trip to the toilet for me takes 40 minutes from the moment I press the buzzer for a nurse to the moment I am safely returned to my bed. At home it takes 3. Most of this is taken up propped up in a cold bathroom with the buzzer going, hoping someone will finally come and fetch me. That is if they come and get me from my bed in time the first place and I don’t end up lying in my own… you get the picture.

    I have also nearly been killed through incompetence when they neglected to give me enough potassium despite me asking every nurse whether it was included. “yes dear, it is in your drip”. “yes, but is there extra?” “it is in your drip”. 2 days later my levels were low enough to induce cardiac symptoms, epilepsy and semi-paralysis. They hadn’t read the part of my notes about chronic potassium loss and the need for daily high supplementation and simply ignored my telling them about it and constant requests. What did they think? That I had some sort of potassium fetish?

    They also try to take my meds off me. When they do I estimate that I have to correct them 1 in three times as they manage to get the doses wrong. Twice they have tried to give me something else altogether which would have been dangerous. Luckily I know exactly what I take and so recognise any errors.

    Despite all of this, there are times I do go back. Sometimes my illness needs treating in hospital much as I hate it and as afraid as I am. It sounds to me like you have reached this point.

    Regarding the powerchair issue, one way round it is to use an accessible taxi firm. In my area there is one called transmobility. There should be at least one in your own area which will take powerchairs. And it sounds like you are sick enough that you will definitely be taken seriously whether you arrive under your own steam or in an ambulance.

    If not, one method I used was to request a stack of bedpans or a commode next to my bed at all times. I know that isn’t what you would want, but it is better than the alternative. For me it at least got rid of the very real fear and strong possibility of soiling myself due to their lack of care.

    As to the rest, I have to weigh up when it is more dangerous staying out than in. You yourself have to decide that. But given what you are writing here it sounds like it is time for you to go in. At the very least you should insist on a home visit from your GP. In my experience these can be difficult to get, particularly when you are so sick you don’t want to argue with an awkward receptionist. However I do think you need to see someone, whatever best course of action you decide upon.

    Take care Ron. Wish I could do more.

    • Hi Sarah – did you ever get your water boiler?

      In recent years my GP simply won’t turn out. Not that I ask a lot – about 6 times since 1996 – but anything more complicated than a respiratory infection and the stock response is call an ambulance, even though the useless sod is in this building pretty much every day.

      I’m going to try to get my GP out in a day or two, as soon as I get my repeat meds delivered. At the moment, though, I’m seriously emotionally unstable (hardly surprising, I suppose), and I fear that being further sleep-deprived in hospital might tip me over the edge into suicide.

      There’s also the problem that it took me months to stabilise my heart condition after the cardiologist got the beta-blocker dose wrong (double what it should have been for my heart failure). I metabolise the drug very quickly, too, so to counter that I split the daily dose into smaller, 12-hourly, doses, which works very well – I really don’t want anyone messing with that.

      Good idea about the commode, though, as often the leeway comes down to seconds, which leaves no time for hanging around!

      I think I might fax my GP, explaining things in detail and asking for a home visit – by-passing reception.

      • I did get my water boiler, thank you! It has made a huge difference. I can’t snack (steroids, bedbound, so need to watch weight) or drink alcohol and used to drink diet coke as my “treat”. I’ve been able to mostly replace it with hot drinks instead. Not only is this healthier for me it is a heck of a lot cheaper. The boiler has already paid for itself. I really can’t thank you enough for pointing me in the right direction.
        I think my carer would also send her thanks if she knew you were responsible for the change as she doesn’t have to carry heavy cans of diet coke every week in my shopping! 😛

        Faxing your GP sounds like a good idea. I have a good relationship with my own and have his email. Same principle. I know receptionists are only doing their job but they often simply don’t cater for long term complicated patients.

        I imagine you’d already have this sorted if it were possible but I’ll ask anyway. Does your beta-blocker not come in the half dose you need? Or are you having to cut it in half yourself? One possibility might be to get your GP to change your prescription to specifically say half dose bd. Then if/when you go to hospital that is what they would give you. On the other hand it still might not be exactly every 12 hours as they are ruled by their dispensation times, not what individual patients need or request. For that it would be better if you could keep hold of your tablets yourself with all the fuss that entails.

        I don’t know what to say about sleep deprivation. It is one of the main reasons I don’t go into hospital myself and keep my stay there as short as possible, preferring to increase my care and go home early. Lack of sleep increases my chances of seizures. At which point they think I need to stay in and I have to argue and explain that it is being in which is making me have the seizures in the first place!
        I’ve never gone down this route but would you consider taking sleeping tablets? I’ve no idea how safe or effective this would be but am just throwing the idea out there. It sounds like you’re at the end of your tether and maybe should consider anything at this stage.

        Take care Ron. Don’t know if it helps but I think there are a lot of people out here who care about you.

        • I imagine you’d already have this sorted if it were possible but I’ll ask anyway. Does your beta-blocker not come in the half dose you need? Or are you having to cut it in half yourself? One possibility might be to get your GP to change your prescription to specifically say half dose bd. Then if/when you go to hospital that is what they would give you.

          Yep – done that. In my experience, though, even consultant-prescribed meds don’t reach the patients in my local hospital – pretty damn sure they’re being syphoned off.

          This time, an updated version of this is being given to ward staff and the consultant
          https://ronsrants.wordpress.com/2011/04/01/taking-your-own-drugs-in-hospital-is-a-right/ Then they can write me up as a confrontational patient again!

          As you can see, I take my meds to a strict timetable, one that’s been worked out over half a lifetime, and I will not have the antiquated ward dispense routine messing that up. As I explained – up to half a dozen times a day last time! – my body, my illness, my routine. Not theirs.

          Don’t know if it helps but I think there are a lot of people out here who care about you.

          There are, and it does help, a lot.

          And for whatever reason, despite a bad morning, as the day goes on I seem to be stabilising. Hungry, too, for the first time in weeks.

  4. I think your fax idea is excellent and I do hope you do precisely that; I’m stuck for words Ron other than wishing you all bet and hoping your GP responds positively x

  5. Please fax your GP Ron, once you have your meds. You’ve gone on like this for long enough now, too long really.
    I don’t know if it would make any difference or not if you are admitted to hospital, but could you type out your meds regime to take with you, stating that this is what works best for you for x, y and z symptoms?

  6. I found that there are some really good incontinence pants that help enormously…very expensive though…I wonder if its a sickness not hungry VIRUS! going about because Ive been feeling the same! Need to eat before I can take any meds! Hope you enjoyed the soup 🙂 x

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