Definitely NOT a match made in heaven.
I just read the very personal post from presenter Andrea McLean about her recent awful experience in hospital after a sudden collapse with pneumonia and sepsis. My heart truly goes out to her and I wish her well in her recovery.
But, to the point of my post: Andrea describes her 4 day stay on a hospital ward as ‘terrifying’ and explains she suffered ‘sensory overload’ from all the screaming, aggressive dementia patients, bright lights, smells of poo, constant beeping of machines and…no I can’t list any more; it’s bringing it all back.
I can so relate. And I was only visiting.
As some of you know, P recently fell off his decorating ladders, was body-boarded by ambulance to Derriford hospital in Plymouth, ended up in Resus and then an assessment ward, as Andrea did, and then onto an orthopaedic ward. I cannot fault the NHS staff or care. I am, frankly, in awe of their acute medicine skills. It swung into very fast action with scans, blood tests, ultrasounds, X-rays, meds – so many meds – I was astounded. Such skill. If you ever need acute care, we have the system right for that in this country. Chronic illness, not so much, of course.
As some of you also know, I have MCAS (mast cell activation syndrome) and part of that, for me and many others with it, is that our brains and nervous systems are very easily overloaded and triggered. In fact, I have to take a lie down most days, not to sleep, but to kind of ‘shut down’ and stop taking stuff in; to let myself calm down sensorily (ooh, it that a word; I like it?).
I realise it is nothing to what poor P was going through, but the whole 13 days of hospital-ness did cause me a huge amount of MCAS stress.
As Andrea explains, riding in an ambulance was not as much fun as you’d imagine. Well, it was actually OK for P who, by this time, was so doped up on morphine, he was the most chatty I’ve ever heard him! For me, the high-pitched beeping monitors, the constant, teeth-rattling ramps at the back, the jumping over potholes, the clinging on for dear life to seats with no sides (great for core muscles, not so great for stress), the chatter of the radio messages, the bright lights I couldn’t shield from, the travel sickness because you can’t see out, and the heat. The HEAT.
I had to ask for it to be switched off – P was covered in blankets, don’t worry – and I had to joke about me being a menopausal woman to cover my embarrassment. Which is worse: trying to explain MCAS or telling a joke that I knew they’d get?
My blood sugar was dropping. My head was aching. I’d had nothing to eat for hours. Honestly, it was very unpleasant.
And all this is on top of the sickening, outwardly-brave worry about P, of course. Watching him being transferred from the floor to boards, from stretchers to trolleys and onto beds was agonising. Although much more for him. It didn’t help when they tried to stretch his wrist into position in front of me. I was nearly sick watching as he pulled on the ‘green whistle’ of pain relief and was injected with nerve blockers.
In Resus, the beeping was constant. It was so bright, I thought I was on the moon. People were in acute distress, yelling out in pain, which upset me, and this was when the smell of chemicals really started to hit. And SO MANY PEOPLE. We counted over the whole experience of him being in hospital for 13 days, he must have seen at least 60 different people. Quite incredible. So many different departments to deal with.
I returned home about 2am that first day, couldn’t sleep for worry and overload and had to drive back to Plymouth in the morning, not an easy drive at the best of times from Cornwall, and attempt to park. No go in the hospital, so I had to find an alternative. Luckily, I found a park and ride 10 minutes away. Fab, I thought. Not so fab when the whole place was jammed. It took me 20 minutes to find a space, just driving round and round with glazed eyes. Over the days, I sussed that I had to wait for a bus to come in and then stalk a person to their car and steal their space. I became a parking stalker!
Not used to public transport (I’m in the wilds of Cornwall, remember), the sensory overload started on the bus each day. People loudly talking on phones, dogs barking, the bus brakes and doors swishing open ands closed, people trying to talk to me and tell me their life story or hospital visiting reason. Normally, I’d enjoy chatting, but when you’re under that kind of stress, you just retreat. Or try to. I hope I managed to smile at least.
I got to the hospital. Honestly, I thought I’d landed in a busy city. So many people. So much noise, So bright. And then the lifts to contend with. Rammed in, trying not to breathe any germs in, or touch anything or anyone, often crammed up against cages or some poor soul in their bed or wheelchair being taken to some appointment. I realised how many people wear very strong aftershave, deodorants and perfumes in those lifts!
After all that, I got to the assessment ward and poor P looked flushed, in pain and very, very stressed. He’d not slept a wink because a dementia lady had been screaming out and having pretend conversations, shouting for the nurses to get her out all night. She was still doing it. Every. Thirty. Seconds. And everywhere was beeping, no-one coming to turn the noise off – I think nurses must become immune to it. I hope so!
I had to get out of the ward. I literally couldn’t stand it. How the heck he had spent a whole night and morning there with that, I couldn’t imagine. I rushed back down in the lifts to the shops and bought him some ear buds so he could listen to something and drown it out. Not the kind of rest he needed at all. This is all so similar to Andrea’s story, but there was no way P was coming out any time soon, whereas Andrea’s begging allowed her a home reprieve after 4 days, thank goodness.
I couldn’t leave him there like that so I spoke to the matron, who I’m sure thought: Oh here’s a bolshy wife! I was kindness personified, I promise, and explained that P’s anxiety was getting to panic level and, he would never say, so I was doing it for him. She said the lady was driving them all round the bend but there was nothing they could do. Thankfully, by the end of the day, they had moved P to the other side of, happily, a very long ward, where he could get some fresh air and some rest. I really felt for anyone left, but I did see that they gradually moved everyone and the lady was moved when they found a more suitable bed for her on a dementia ward. Poor woman. It was heart-breaking.
So that wasn’t a great start. It’s actually triggering me even writing about it so far! I was quite literally shaking with the overload that day. I could hardly drive home.
And so it continued, really. The worry, driving, parking/stalking, busing, lifting etc continued. The people near P changed a lot. Most were quiet but we did have one chap opposite for several days who spent the whole time loudly on his phone telling everyone about his accident, calling his car insurance etc etc. Next to a notice saying no mobile phone talking! No-one asked him to stop. I stared at him quite a few times to no avail. I think I heard the story nine times. Goodness knows how many times P heard it. We had another chap who was seemingly addicted to spraying himself with something like Lynx deodorant. I had to leave the ward for 15 minutes every time he did it. There really should be rules for noise and chemicals. Or ones that are enforced, anyway, although I doubt the overworked staff had that at the forefront of their minds, to be honest.
The biggest sensory overload on the wards, for me at least, was the chemical smell, and not just the Lynx! I went home every day on painkillers with a thumping head, feeling sick, pre-migrainey. For P, it was the lack of rest because of the noise, although thankfully even he became immune to the beeping after a few days. Also, being woken up as the sun rose to have his meds, blood pressure and oxygen checks etc. As I say, the care was exemplary. Ooh, another nice word! But truly, it was. They had so much to do but, with the exception of a couple of clearly exhausted staff members, everyone was smiley, kind and efficient.
Anyway, the point of this post was to give a little insight into what it is like even visiting a hospital with MCAS. I honestly feel terrified to think how I would cope having to stay. I wouldn’t be able to tolerate the meds, the drips with corny glucose in, the food – which was not bad actually for P: soft and pappy, no fibre, but edible. P enjoyed it, mainly because he got choices from the staff vegan menu half the time! That’s a good tip, actually, if you ever do find yourself there – say you’re vegan and you may get a better menu. Or a lettuce leaf. Don’t blame me. Anyway, someone would have to bring me food I could tolerate or I’d have to subsist on bowls of fruit or something.
All that, let alone the sensory overload to cope with.
I’m shaking with the anxiety again just thinking about it. MCAS is a horrid condition to have. It makes every day life difficult because we are hyper-reactive to so much, there are so many different triggers and they can change minute by minute, depending on the cumulative load. If you add in an event or environment like that, I just don’t know how I’d cope. Please God I’d be able to have a separate room at least. Or, better still, don’t do anything that needs a hospital stay!
Ugh. The thought.
I’m off for a lie down in a quiet room to shut down for a bit xx