There’s no hospital without a bit of hell! 

I did good to stay out of hospital for almost 6 weeks after being in for an entire year. I’m at my local hospital unfortunately but hopefully I’ll be out soon!
Staying out of hospital is like trying to thread a thin needle with a big piece of thread blindly. Basically an absolute nightmare. You think you’ve got it in, then you haven’t. There’s that uncertainty of “will I thread this needle today, or will I miss and not bother?” Hit or miss! In a creative way, that’s what trying to stay out of hospital is (to me) when you live with a long term, unpredictable list of illnesses from a constantly controversial vaccine. You’re sick every day but there’s always times when you need urgent medical attention. I should’ve rung an ambulance 12+ times in the last couple of weeks for firstly a sepsis precaution protocol (I had a temp and a blotchy rash on my chest which came and went), then secondly because I’ve been growing an unusual bug in my urine I was ‘attempting’ to try multiple antibiotics via my Jejunostomy (bearing in mind I’ve developed severe hypersensitivity’s to oral antibiotics and paracetamol {which go directly into my bowel} a year ago but I’ve never needed anything other that Trimethoprim to solve the problem-which I’m thankfully fine with!) Annoyingly I had EXTREME reactions to the antibiotics which are needed to get rid of the bug, meaning back to back (my normal) mast cell reactions and major side effects including instant paralysis of my left arm traveling across my chest along the collar bone, intense chest pain on top of my POTS, I didn’t know who or where I was, my eyes were fixed then rolling, I was high as a kite vomiting, trembling, the celling and walls were caving in and I was hallucinating for 5 hours straight seeing mostly lizards😂It’s funny now, but it definitely wasn’t at the time. As we always do, if it’s something mum and me can control we wait it out-so s that’s what we did. I was getting worse {infection wise} so I tried it in crushed tablets which did virtually the same thing. I then had a completely different antibiotic in a different family; third time lucky…which did the bloody same! I had enough and I was deteriorating more and more, so after those episodes past and the doctors had no other options and were completely baffled, even more baffled at the fact that I said “I’m fine with IV’s!” So unfortunately the only option was to have a strong course of IV cipormycin (generic name: gentamicin) in hospital because it’s too much responsibility for the district nurses. 
A story in itself, the ambulance came took me to the local (hospital, not the pub!) taking all of my medical equipment because I know they wouldn’t put up IV fluids straight away let alone my connect my ‘special’ compounded fluids to my central line (nobody in a&e and the ward know what to do with it AND nobody is trained to simply mix and put up my feed because they’ve “never had a patient like this before” B.S they’re all to lazy but blaming it on my ‘complexity’. We warned everyone of my seizures (had one within 15 minutes of arriving) etc. plus my entire medical history then (I kid you not) the doctor, nurses and sister of the ward looked at each-other and said “mum, would you like to stay?” because I’m to much of a responsibility and liability. They’re lovely enough, but they all freaked out. They’ve done nothing apart from hang an IV and leaving my mum to do the rest instead of put your feet up, and rest! Now I’m in a side room it hardly feels like I’m in hospital at all apart from the grubby interior and smell of hospital food. I just don’t know why they don’t want to challenge themselves when day in day out they witness the same shenanigans on the urology ward? I’d jump at the chance to try something new! Anyways…Moving on!
Of course, after you have had a smooth ambulance journey with lovely paramedics who really understood my situation, allowing me to have entanox to make me comfortable, not wanting to leave because they would love to learn more about my conditions and also meeting a lovely nurse (who’s friend is injured by the vaccine for HPV) upon arrival-something has to go wrong; somebody has to destroy an easy admission requested by my GP as urgent and important. A junior doctor {who looked about 17} was sent to me with the registrar knowing that he has not got the experience nor knowledge to talk to me, let alone examine and consult someone of my ‘complexity’. I thought a first A&E/hospital admission with my tubes and central line would be straight forward, but I guess not. I was told it wasn’t an emergency and he doesn’t understand why I’m here and thought it was wrong (for someone higher than him) to phone an ambulance to get me urgent medical attention and tests because I have signs of sepsis and needed to get rid of an infection intravenously which was all written on the admission form. We ask “what’s your sepsis protocol”.. “oh, we don’t have one… plus you don’t have sepsis you bloods fine… why are you here *smerk*” 1-what kind of HOSPITAL doesn’t have a protocol for the silent killer of sepsis or septicaemia and 2- I was told to call 999 immediately if I had a rash on my chest, fever of 38+ , vomiting and feeling extra unwell in myself. I had them all on and off for 3 days and was really out of it on Tuesday morning, I never ask my mum to ring someone unless I’m bad, so she rang the doctors and he came out straight away and called an ambulance. My GP and I don’t want me to end up in ICU again with sepsis so it’s best to be safe than sorry. You can’t take a chance on life. Anything can happen I’ve learnt that! Then the idiot who lost his bedside manner started quizzing me about my tubes and my line. “Why do you have tubes” -I have Gastroparesis. “But I don’t get it, why can’t you swallow, does it just hurt to swallow is that why you can’t?” -no my esophagus is paralysed; even if I could my stomach wouldn’t take it. “Why don’t you try” “why do you have a central line, you don’t need it” “why don’t you have the water down your jejunum then?” “What’s the difference between IV fluids and water”- I have calories, sodium and glucose + everything else that I need in it. It went on for EVER. I answered each question scientifically on point and he hated my replies and the questions I asked him😂. I literally had 20 questions fired at me when the rest of my medical history has nothing to do with him, apart from my over all health which is infection-suspected borderline sepsis. He told me, without looking at me or mum In the eyes, ” I’m not convinced, it’s ridiculous that you’re here, I’m just not convinced that the medication is going to make you better. You’re conditions are chronic, not acute. The hospital is not the place for you. I won’t be giving you antibiotics; but you can see the consultant if you don’t believe me” I saw the consultant and she listened and understood relatively well and when she said “you’ve got a temp of 38.9 I’m going to admit you, you need the medicine asap!” The junior shook his head and walked off. 
After explaining my entire life story on the ward I got the gentamicin and having another tonight and maybe tomorrow. I forgot how strong that stuff is. Plus it’s true, they haven’t got a protocol for sepsis!!! How insane. They’re not even taking cultures from my line or giving me a chest X-ray or ultrasound.; standard procedures…NHS cutbacks I guess. So we’re hoping that if the bugs reached my line it will kill every thing but me!!

I hope I get out this hell hole fast.

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