I have had enough. Forever…

NB: To spare any misunderstanding, this is NOT a suicide note.

***

Ambition: Not to wake up one morning. Lurching from crisis to crisis almost daily & no end in sight. Really don’t want to live like this.

The plan was to post that on Twitter this morning, but I thought maybe it needs some clarification – very much not a cry for help, but of exasperation; desperation, too. I’ve been seriously ill for 65 of my 67 years, but thanks to an innate bloody-mindedness I’ve never once thought about just giving in to it.

Until now – I simply have no reserves left.

I’ve been trying to find out, empirically, the cause of my permanent nausea and, since Christmas, vomiting. I noticed that, when I woke at 06.00 to take my first meds of the day, I wasn’t nauseous, but when I woke again a couple of hours later, there it was.

A few days ago, because I forgot to put up my meds the previous night, I didn’t take them at 06.00, Nor, for some reason, could I get back to sleep, so I lay there feeling the nausea build up to its usual “Oh god, I’m gonna puke!” level (I live, 24/7, with a bowl within reach). Some days I wish I could puke, to maybe get what’s causing the problem out of my system – other days I wish I could stop!

So, anyway, it’s not my meds causing it, as I’d thought. Unless the constant intake of toxins (all drugs are toxic on some level), for so long has completely screwed up my system. Not, I think, an impossibility.

Currently – and have for quite a long time – I’m taking 16 drugs a day, minimum, 12 of which are tablets or capsules, the rest inhalers. If I take my supplements as well (for ME, and which, for now, I’ve stopped), that’s 40-odd tabs and caps a day, plus antibiotics when needed. So, yes, I think it’s quite possible that my system is rebelling at the long-term abuse. Trouble is, there’s not a hell of a lot I can do about that.

There’s also the problem that putting anything in my mouth – food, tablets, drinks, whatever – triggers the gag reflex. As does coughing (it seems my body can’t differentiate between expectoration and emesis any longer).

As a child I had this problem with tablets – unfortunate because even then I had rather a lot – and could only take them crushed in a teaspoon of jam. Fast forward to adulthood, and I could happily toss a dozen or more tabs and caps in my mouth at once, and wash them down with no problems. Now, though, since Christmas, I seem to be 5 years old again, in that respect. Not quite reduced to crushing them in jam – mainly because I don’t have any!

On the plus side, I have finally eliminated the possibility of lactose or casein  intolerance, by the simple expedient of drinking 2 pints of whole milk and waiting to see what happened, which turned out to be nothing.

So why did I have problems with cheese, and with Clover spread? Unless it was the fat content, I have no idea (despite the paranoia over whole milk, it’s only 3% fat). I have no problems with soya or sunflower oil spread, other than the latter tastes of almost nothing, but they are a lot lower in fat than Clover. QED maybe?

I had thought I’d found the cause of my diarrhoea – the curse of generic Omeprazole, as here and here.

I stopped taking it and, in three days, my bowels had returned almost to normal, until late last night, when the diarrhoea returned as if it had never been away. And, of course, vomiting goes hand in hand with it. For reasons that entirely elude me, a bowel movement = must puke!

At the time of writing, I’ve eaten nothing for 3 days, getting by on just milk, but still I try to puke. Involuntarily, I hasten to add!

It seems all I can tolerate, to eat, is canned fish sprinkled with balsamic vinegar – at least if I can get it down I can keep it down – the big problem is getting past the extreme nausea to eat it in the first place.

I ordered a lot of my favourite foods a few days ago – mostly frozen fish and canned soup – in the hope I’d be encouraged to eat. The frozen stuff is in the freezer, the cans are still where the delivery guy left them, just inside the door – I just don’t have the strength or the energy to move them.

I have, rightly or wrongly, little doubt that I’m dying – I just wish it wouldn’t take so long.

I caught sight of myself in the bathroom mirror last night – I look appalling and my hair has gone almost entirely white in the last couple of weeks.

I can hear some of you saying “Why the hell doesn’t he get the doctor out?”

Fair question. First there’s the problem of actually getting a home visit – they only turn out for emergencies, and my problems are chronic. Their response the last few times I’ve asked for a home visit, has been “Get an ambulance!”

Then there’s the almost cast-iron certainty that I’ll be admitted to Arrowe Park Hospital, where I sincerely doubt I’d survive. They had a bloody good go at killing me two years ago through sheer incompetence;** I’m in no hurry to give them another chance.

**Check out this post re i-v saline. It also clarifies why I have no desire to end up in APH ever again.

There’s only one thing I’m sure of, right now, and it’s that I have had enough. Forever.

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27 thoughts on “I have had enough. Forever…

    • I’m sorry if it upset you – or anyone – that wasn’t my intention, but I just had to get it out of my head – and this is my only outlet.

      Ron.

  1. Oh dont give up RON – though how you remain so lucid during your turmoil and suffering is awsome – you are class and a beacon of wisdom, in an uncaring world

  2. Ron enough is enough and you have so obviously had enough, call the doctors, failing that call an ambulance and get some medical help. No, you’re right I have no right whatsoever to tell you what to do but if you truly believe this is it and you are in the process of losing your fight for life then please please don’t do it there on your own, go to hospital where there are people, even if you don’t agree to any medical intervention go and be cared for.

    • Penny, if I had a decent hospital I would. I’m absolutely certain, though, that I’ll live longer here than there! All I’ll get at Arrowe Park is a breakdown from sleep deprivation. Again.

      I missed a cardiology appointment recently – got the date wrong. Did they follow up to see if I was OK or not? No.

      I lived in Machynlleth, in Mid Wales, for a while, and got far better treatment in the little local hospital with pneumonia than I ever have at Arrowe Park.

  3. no-one knows how anyone else feels, so to say ‘I’m sorry’ seems a bit inadequate, although it does really sum it up. I’m hoping that by venting how you feel on here, it somehow helps.
    I like this quote:
    Any idiot can face a crisis – it’s day to day living that wears you out. (Anton Chekhov)

    • The title is a quotation too – damned if I can find out what from though. I think it might be a movie, though it has a slightly Tolkienesque flavour.

  4. I’m sorry to hear all this. Dunno whether you need a big hug or slapped legs? I agree with Penny, when you feel like this you need looking after, so dial that number… please? We would miss you so much if you went, so please, do it for us? xxx

    • See my reply to Penny.

      Plus I made a complaint about a consultant cardiologist last year, and now they don’t want to play with me.

  5. Hi, i’m sorry that you’re feeling this way, and obviously there’s not much of anything anyone reading this can do. Just sorry to read really. I’m not good at words sometimes, and this is one of those times

  6. Hi Ron,

    I too am so sorry you are feeling this way and I also found this hard to read. God knows you have been through more than enough this last couple of years.

    Would it help if you came to my house near Preston (I would come and get you) and then we ring an ambulance from here. You would then be admitted to either Royal Preston or Chorley and South Ribble.

    Please think about this and let me know via email.

    Chris xx

  7. Once again, I’d like to thank you all for your kind words – knowing that there are people out there who care has helped tremendously. (I live in a sheltered flat – not that it makes a blind bit of difference to the isolation you tend to get in flats!)

    Just had my first food in 4 days – only a can of veg soup, but a step in the right direction, especially if I get to keep it 😉 Hadn’t realised til I started it how hungry I was! Seriously tempted to have a second can, but don’t want to push my luck, so I’ll wait a while.

    I bought plenty of veg soup, and chicken noodle, plus some big cans of beans that, with a good handful of dried veg and some stock will make a more robust soup for zero work. Dehydrated veg are a blessing for spoonies – anyone interested, I get mine here http://www.justingredients.co.uk/culinary-herbs-and-spices/dehydrated-vegetables.html?mode=list I generally buy the mixed veg. I also get dried onions, plus onion powder and tomato powder (keeps much longer than purée), and bulk paprika(I get through a lot), from these guys http://www.healthysupplies.co.uk

    Another bit of good news – vomiting has stopped for a few hours!

    Ron

  8. So glad you’ve managed some food. Sure you’re caught up in a bit of a vicious circle, this is very hard to break. That was a kind and excellent idea of Christines and well worth more than a 2nd thought. Love from Anne xxx

  9. Hello Ron,

    Glad you have kept your soup down, I’d stay on soup for a couple of days if I was you we have always stuck with veg and chicken noodle with a bad stomach, they are gentle on the tummy.

    It’s hard enough been chronically sick and disabled, but when something extra is thrown in like you’ve had, been alone can be scary. You do have lot’s of people who care so just reach out, I’m sure between us we can help out and taking Chris up on her offer is what I would recommend, I’m in St Helens if you want to come this way I drive so could also pick you up.

    I do recommend you see a Doc though.

    Hope the soup has still stayed down.

    Beverley

    • Hi Bev,

      Soup stayed put – just had another and it seems to have pressed my hungry button. Not surprising I suppose. The other thing I can keep down – and it sounds counter-intuitive – is sardines or tuna, doused in balsamic vinegar. The vinegar actually seems to be beneficial. Don’t want to push my luck, so that can wait a couple of hours.

      I’ll drop you an email later, Bev.

      Ron.

  10. I wish you all best and so hope that you can keep on keeping food down and then go & get this checked.

    Whatever & however you decide, please do something to help

    Hope to read a follow up soon Ron xx

  11. I sent a big reply yesterday and it’s disappeared! Bloody smart ‘phones!
    I truly hope you can get some help from somewhere that puts you, the patient first and actually listens to you. It’s not a lot to ask! Perhaps they are one of the hospitals that are under investigation? If so, you’d get 5 * treatment now :).
    We are all here for you Ron, we may not be able to do anything practical but we are here for anything else.

    • Hi Jay,

      Have a look in Drafts – it might be in there.

      I checked Arrowe Park, but they’re not being investigated. Mind you, if my experience is at all typical they simply deny complaints and sweep them under the carpet, so they don’t make the official record.

  12. Ron, i don’t know you but i feel i do!, You are the most incredible man i have ever read about…Despite your illnesses you have an amazing ability to write..You are reaching out to so many people and i’m damn sure you are helping them more than you’ll ever know..Now that’s a ‘gift’ You’re a star in my eyes…I feel for you and i am also frustrated for you ..I hope to god you find ‘peace’ soon..Take care my friend..Ali.x

  13. It’s frurtarting and somewhat heartbreaking to be at this end of things knowing I cannot help you. As you know I’m drug free. Well what controlled nausea for me was cannabis. It’s available here in Canada for medical treatment and it worked when pharmaceuticals didn’t.

    • To be honest tt, all the support and feedback I’m getting is absolutely invaluable.

      I actually tried cannabis for nausea in the nineties, but it didn’t do anything much. At the moment, 150ml of ginger wine diluted with an equal amount of water, and sipped over a couple of hours is reasonably effective. I used to drink it neat, but it just makes me sick, like most other alcohol does now. On the plus side, not being able to drink saves an absurd amount of money, especially when taxi fares are factored in.

  14. I’ve only just read this, so apologies for being behind. I understand how you feel, and feel that way myself sometimes, with my terminal illness. I appreciate living extra years, but sometimes the days are so hard to get through, and the deterioration so relentless that I wish it was all over. I’ve just had my umpteenth session of radio and write this with 2 broken arms and a fractured pelvis. Im going bald again and look nothing like the healthy and happy me that used to stare back out from the mirror. The mental torture is as bad as the physical.

    We only have the one life that we know about so do everything you can to get yourself sorted. Sending all my best wishes that it improves somehow and I can only echo others – you are a blogger with acuity, wit, rage and sarcasm, and that’s a combination that should be preserved. x

    • I’m so sorry, Ann – I had no idea you were so ill.

      I know exactly what you mean about mirrors, too – the haggard, white-haired, old man who stares back at me these days feels completely alien. And although the fact I’m still here means I’m ahead of the averages, there are, perhaps, too many nights when I go to sleep feeling I’d be happy not to wake up.

      I won’t say “Get well soon,” that would be facile, but I do hope you feel as well as you possibly can.

      Take care, Ann . . .

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