An Enigma wrapped in a Mystery

Last Monday’s post didn’t happen as planned as I had an unexpected hospital inpatient stay starting a few days before usually posting and then haven’t managed to find a good enough internet connection to post since. My hospital stay morphed into nearly a week’s package holiday courtesy of the NHS. It was even sunny, I had unlimited drinks and an ensuite room…well, OK, I couldn’t go outside, it was only water and it wasn’t that much fun.

I really didn’t feel well towards the end of last week but couldn’t work out what exactly was wrong. I just didn’t feel right and kept feeling fairly unreal. By the weekend I was feeling really bad, and could not easily get out of bed. I had a really horrible headache, severe joint pain and nothing was making it any better. Eventually I gave in and a phone call to NHS 24 followed, they wanted to send out an ambulance to me as my SATS by this point were also really poor but as that is fairly normal for me, we managed to persuade them not to (it’s quite bad when you suddenly realise what would be an emergency for most people has become an everyday experience). It was decided that the out of hours doctor would visit me at home. Ten minutes later the doctor rang and it turned out it was my usual GP on call and she thought I would probably need to make my own way to the hospital to be seen as it sounded quite serious. Fast forward through time and I was in the car on the way to hospital when I felt really, really strange and horrible. I kept becoming incredibly faint (thank goodness for seatbelts) and then got unusual pins and needles down my left arm which felt like I was being pixelated. My Mum later told me that I went the oddest colour she has seen me go yet. Arriving in the hospital carpark, this continued and I was somewhat embarrassingly rescued from the car by paramedics who took me into A and E, causing everyone to stare at me. By this point I was a sort of incoherent heap so they decided I couldn’t speak English! Turns out if you want a way to skip queues in hospitals this is the way to do it! I got taken straight to a bay, had two nurses and a doctor appear within seconds, had an ECG, cannula and bloods taken in the time it would normally take me to give my name into reception.

Other than showing sinus tachycardia my ECG was clear, so they thought I was probably going into some other type of organ failure. Only then my bloods came back and didn’t show that either. I was becoming a bit of a mystery or to quote the consultant ‘an enigma wrapped in a mystery’. It was obvious something was extremely wrong as I couldn’t sit or stand up without setting off heart monitors (with a significantly higher pulse than my usual tachycardia) and sending people running, and when I had a stand test I couldn’t manage this for very long and make me extremely faint and caused tremors (not fun when you have joints that don’t do there job anyway). I was admitted to the ward for observation and attached to many wires, given IV fluids and told we would wait and see what would happen.

What happened was I continued to get worse and the next morning my eye sight had almost completely gone. This is the scariest thing I think that has happened to date. I also had such a bad headache that it made the pain of the shoulder, I am good at dislocating, seem nothing in comparison. To say it was horrible would be an understatement. Luckily I had timed having this flair up very well, as there was a visiting consultant at the hospital for that week only who knew about dysautonomia (messed up autonomic system). He thought this was probably just all connected to that, gave me even stronger doses of morphine, antiemetics and increased my IV. He also came up with the genius idea of drinking ice water. The ice works to constrict all your blood vessels and so helps your blood flow better instead of pooling (which is what my body now does), as blood vessels constrict this reduces your heart rate as you don’t have to work so hard to pump blood back up through your veins and also brings your blood pressure back up. Basically ice is a amazing and more effective, in this case, then tablets. Unfortunately he did say that there was nothing they could do in anyway to cure me and there are no facilities anywhere near here to investigate all they could do was try to make the situation as bearable as possible and apply a sticking plaster until I can see the experts in London.

I had several days of the ‘sticking plaster treatment’ and yesterday afternoon was allowed to go home armed with yet another exotic cocktail of medication. They suspect that as my body is really not working properly I am struggling to get blood and oxygen transported round which is what is causing me to be extremely unwell. I have also now lost enough weight to flag up red on everything and been told that if I lose anymore I will have to go down to child doses of tablets because my BMI will not be enough (this is despite me still eating).

While I am home now, my pulse continues to be extremely erratic and now I am off IV I’m back to a very low blood pressure again. Even as I was getting ready to leave the hospital I was still setting off heart monitor alarms but unfortunately there is nothing else that they can really do at the moment. Everything is depending on London. This is very frustrating, exhausting and I am learning not having answers is not something I can cope with very easily. However, I am now only a few days away from the London trip and at least I am home for the time being.

I now have an appointment in a few weeks to make an emergency plan for when I’m admitted to hospital of what I want or don’t want to happen.

Meanwhile this has given me an unexpected holiday from studying and a chance to watch more Doctor Who episodes! My wheelchair arrives soon so I am busy thinking of names!


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