Another negative update – sorry!

Hello again everyone & sorry for the delayed update.

I had a brief stay in hospital as my RIG-J was causing me lots of pain and – as I expected – the tube had flipped out of the Jej (small bowel where I’m fed, given medication etc.) into my stomach (which doesn’t work, and is on free drainage anyway!).

As you all know, I’m not one to moan about the NHS. I think it’s a service that we are privileged to have in the UK, and without it, I don’t doubt that I wouldn’t still be here now.

However, the medicalp pop ppparts of my life at the moment are having such a negative effect (mentally, especially), as it’s relentless. I was promised that after the Cyclizine detox – as hard as the actual process may be – my life would be 100x better.

Instead, I’m being bullied (not to use that word lightly) by medical professionals who you’d think would be at the centre of my care, but are instead making my life more difficult than it already is, and it’s honestly relentless (to the point where I don’t know who or where to turn next).

To give a few examples:

  • I feel I’m being punished for the high dose of Cyclizine I WAS on, by being treated like an ex-drug addict, especially by my GP unfortunately – the doctor who I need the closest and most open relationship with. I’m not trusted with the 3 doses of Cyclizine that I’ve been told I have to remain on (despite it being agreed that I am the one to take responsibility and administer the IV meds myself, so deliveries are daily – often within 5 minutes of the dose being due (or late, leaving me waiting). This restricts each day as it means that between 12 & 3, I have to be at home in preparation for the delivery.
  • My pain relief – which I use for dislocations, stomach pain, bladder pain, my joints (amongst more) is being stopped against my will and with no input from me. My GP even mentioned changing my lozenges to patches, to then wean down. This will mean 40 fentanyl patches stuck on my body at once, (all to be changed every 3rd day) and being left to suffer breakthrough pain – such as when I dislocate.
  • My carers/the funding body – my carers who I have 24 hours a day at home, (so who know me pretty well to say the least!) – have now been stopped from coming into hospital when I’m admitted. I’m well aware that the hospital staff are capable, but MY health needs are very complex, and very different to others; including problems that a) aren’t taught to nurses, b) don’t present ‘typically’ and c) the cause of the symptoms are still unknown. That’s aside from the emotional support and ‘homesick’ feeling that they really honestly help with.

This is a really hard time for me anyway, and a time I’m really struggling with. I need all the help I can get, yet these seemingly ‘small and petty problems’ build up and get on top of you and weigh you down.

After going through such a difficult process with the weaning programme, I just want to be at home and enjoy my life without it being completely medically-related.

I feel down, isolated, and as much as my family are trying to help me, I have no friends, and at the moment my mood is really low.

I spent a night in hospital with a broken feeding tube on Monday. I went in for multiple reasons:

  • Pain relief whilst my bag wouldn’t drain
  • Receive my normal medication but via my Hickman line whilst my RIG-J was broken
  • Fluids for hydration whilst I couldn’t have my feed through my tube
  • To have my tube replaced!

Out of the list above, the only thing that was addressed by the hospital was the tube replacement, which was done the following day.

Below are what, in my opinion, was wrong on the part of the hospital.

(Many people won’t agree with me listing their faults, but I’m pointing them out to highlight the strain on the NHS currently).

  • I waited 9 hours to see a medical doctor.
  • Despite my dislocations, I was placed on a trolley in the corridor, where I waited 14 hours for a bed and a cubicle.
    • Even then, no pillows were available.
  • Poor handling and use of my Hickman Line, (my life line!), put it at risk of permanent damage.
  • There was no time to find a doctor to prescribe fluids.
  • There was no time to find a doctor to write up my regular RIG-J meds as IVs, so I didn’t have them.
  • By the time I saw a doctor, we were into the next 24 hour period and so I was able to have my own pain relief.
  • I had no access to a suction machine for my tracheostomy.
  • I wasn’t offered anything to drink (or eat) all the time I was there.

It’s fair to say that I was so pleased to get home!

As I say, I’m not moaning aimlessly in particular, but more to highlight the stress and strain that the NHS are under and the staff at having to face, which I appreciate is completely out of their hands!).

Anyway, I apologise to everyone for my miserableness lately. I’m doing all I can to improve my own mental health so I do hope it’s only temporary and I’ll be back to my normal self asap!

1 thought on “Another negative update – sorry!”

  1. I’m so sad reading your latest update.
    I have many of my own issues and have come across you quite by accident.
    I hope you are able to battle through and get some help via PALS perhaps in order to properly manage your ongoing condition whether in the community or in hospital. Perhaps there is a community nurse service available to try to maintain strict guidelines for ongoing issues?
    I have PTSD which is complicated and compounded by mid treatment/misdiagnosis and the bullying from the dwp/pip/esa systems. A major trigger for me is not being believed, and thus my MH is greatly affected/depression and anxiety.
    I would love to involve myself with what you do and all u achieve. Big hugs sent
    Sally Clare xx

    Like

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