The events of the last 48 hours have left me in no doubt that I will probably never go into hospital as an admission for my condition ever again.
Sadly things have been going from bad to worse recently and I woke up yesterday morning and was violently sick. This is really unusual, something I don’t do. So it was a bit of a warning signal. It was 7:30am and as usual I had woken Andrew up, something I always end up feeling guilty about. Anyway once I had finished being sick Andrew got me back to bed and I drifted off to sleep, my morning was spent off and on being poorly.
Andrew came home mid morning to check up on me and I wasn’t doing too well, I had taken a tumble so he got me back to bed, made sure I had everything to hand and promised to be back within a couple of hours.
As promised he was back a couple of hours later, I wasn’t any brighter, in fact I was deteriorating. That was the first time the word hospital was mentioned, I was pretty “out of it” but sort of agreed which is a big step so I know I was ill.
At around 4:30ish I needed the loo, as I headed back to bed, I had another funny turn. This was another episode of the Reflex Anoxic Seizure that I had first experienced at Easter. Luckily I always carry my mobile on me and once I came round I was able to make my emergency call. Within two minutes Andrew had come and scooped me up from the landing floor. I had bashed my left hip and elbow, knocked my head but thankfully nothing more than that! Again how I hadn’t tumbled down the stairs I don’t know? My knight in shining armour made me put my arms around his neck and just lifted me up and placed me back into bed.
He immediately dialed 111, we aren’t glory hunters and didn’t want 999 and blues and twos to the door. Advice first from the NHS to see what they thought. After several questions Andrew finished the call and was trying to put some PJ’s on me, making me half way decent. I still looked a state (and still do) but to be honest I didn’t and still don’t care right now! Then he just needed to keep an eye out for the ambulance to arrive and within fifteen minutes they were here.
The loveliest crew were soon in my bedroom. Lucy and Martin, but with less than an hour until they were due to knock off, they didn’t rush us, they cared and nurtured. Whilst one didn’t know what EDS was the other did and for that I fully understood and respected the shared knowledge. By the time they got me to the ambulance we had built a lovely rapport. They knew about “cluster headaches” and Lucy wanted me to try oxygen to see if it would help. So we gave it a go. It didn’t help so to help with the pain and for the rest of the horrible journey I got entonox. For the first time in three years I was floating, painless … It was lovely. Such a shame it was only for about ten minutes 😦
Booking in at Wexham was an experience I haven’t been there since 2011, it’s changed so much. The first nurse kept flitting, it was almost like he was too busy to care, I had too many syndromes for him to be bothered at one point. They took blood, by putting a “tap” into me as the phlebotomist jokingly told me. Then that was it, I was whisked off to the resus unit.
And this was where I stayed for over six hours!! The first nurse I saw asked me why I had turned up. So I again explained what was wrong. I told her about my PoTs, what’s that she said, so I explained, she’d never heard of it, so I explained about my Joint Hypermobility diagnosis and that I was waiting for an Ehlers-Danlos Syndrome diagnosis, again never heard of it. There I was in agony, ill and trying to explain to a nurse my medical conditions. So what has she been training all these years for?
A few more nurses and finally a doctor came to see me. So I end up going through the whole days events again. This will be about the eighth time I have explained what’s happened. Also the Resus is really noisy, pain is 8/10 on the pain scale if not worse and I’m under the brightest fluorescent light and every bedside alarm in the ward is chiming. So I can barely focus or concentrate, my brain fog is messing me up. So trying to get everything out in some kind if order was really tricky.
So the doctor is being given a breakdown of the last three years and the more specific events of why I’m there today. He says my bloods are normal, so he’s not concerned on that side. He is aware my BP is low, yes that’s normal for me. So he decides to do a poor mans tilt test. Checking pulse and BP, laying, sitting and standing without a tilt table and without constant monitoring, just three readings. It’s not completely accurate but gives them an idea. I explained about my meeting with the Cardio Doctor a couple of weeks ago and his investigations for Addison’s, and he raised an eyebrow. Almost querying the consultants decision, I then explained the five stone weight loss and he shut up then.
He put me on two drips one to stop all the gastric problems and one to boost my fluids. Then I was left for hours and hours.
About two hours later I had to ask a nurse to disconnect me as I was desperate to go to the loo, I hadn’t been since 4:30pm it was now midnight. There were no wheelchairs, no offer for help, so I just used Andrews assistance and struggled my way to the nearest toilet which I could find. Which was a men’s loo. I didn’t care by that point! When we got back we were told a medical doctor would be coming to see me soon.
About an hour later the doctor came and took my notes explaining he would have a read through and then come for a chat. When he came back he was quite personable, I liked that about him. He asked how I was doing I replied “crap”. He asked better crap or worse crap? I said a little better crap than when I had first arrived. So explanation number nine. We went through everything again but he was ok though. He asked what I would like to do now ultimately I can’t have what I want, which is this all to go away, so I said I would like to go home and rest because it had become apparent over those six hours hospital wasn’t the place for me. He agreed being brutally honest, I had a good care plan in place, whatever had happened had occurred, I had not sustained any injuries but if anything similar occurred I was to return immediately. I was of course to bed rest for the next few days.
With that I was discharged, free to come home, it was the early hours of the morning, poor Andrew hadn’t eaten since lunchtime. He was exhausted and had been by my side throughout again, without gripe or grumble.
So as he put me back into my PJ’s and led me back to out to our car, I gave his hand an extra squeeze just so he would know, how lucky I am to have the one constant in my life ….. love x