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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I am getting a Wheelchair

I am getting a wheelchair.

This is such a strange statement to me that I have yet to say it out loud to anyone. I can’t quite imagine it.

This morning I had my occupational therapist assessment. Luckily she was lovely, as when she arrived I was completely flustered. I live with two border collies, one of whom is super friendly and the other is friendly until a stranger decides to pay attention to her. She is blind and so has frights if people touch her and she wasn’t expecting it and so in these occasions she can growl and scare people (she is a really nice dog and her bark is worse than her bite). I decided to put her in my Mum’s bedroom while the occupational therapist was here to save any of these problems. Only no sooner had I put her in and she knocked over an entire glass vase of lilies. She was covered in pollen which is poisonous and so I had to take her out the room, sponge her off and make sure nobody stood on glass. While trying to do this, the phone rang. I thought it would probably be the OT as we’re not the easiest of houses to find and you have to drive through a field of cows to get to us, so answered it. It wasn’t the OT, it was my doctor wanting to have a phone consultation about my CT scan results, seeing a dietician and how I was doing.

Here I was one hand sponging pollen off a dog, the other hand holding the phone. Trying to listen to the doctor and answer questions (I’m really terrible at speaking on phones at the best of times) and remember everything I had to ask when there is a knock on the door. Both dogs tear off barking, I can’t hear a word of what is being said and I have absolutely no idea what to do. I am standing there with a yellow cloth practically spinning circles.

I manage to tell the doctor I have to go as there is someone at the door and put the phone down (I wasn’t quite sure do I hang up, do I ring back, to I just wait)… anyway, I was very stressed! I answered the door and it was the OT who had arrived early! To say I was flustered would be an understatement!

Trying to recover best I could, I then had my assessment. I had no idea what to expect the assessment to be like. I expected there to be some questions, probably some judgement along the lines of ‘your too young to be having these problems’ and not to be able to get much help. I was wrong. My Occupational Therapist was lovely. She quickly made friends with the dogs and got me to talk through my typical day, stopping every now and then to ask questions. She made notes and then after that started brain storming ideas. She did say a lot of the lifestyle changes I had made already e.g. standing up slowly, sitting down when possible etc. I also already have a mattress lifter installed by the district nurses and been given a shower and perching stool.

The bad news is in many ways I’m too unwell to get much help. I need to be a bit better to get support for kitchen equipment and things as right now I would be classed as needing carers to do these things for me completely. I also should not be showering in the house unattended or going out by myself. Until the doctors improve these things and they change I am a bit stuck. However I am getting grab rails fitted round the house and need to make a list over the next week of where I want them. I’m also getting a wheelchair.

It is funny how mixed my feelings over a wheelchair are. I can see that it will be super helpful, in that I’ve not left the house for six weeks except to go to the hospital or doctors. I’ll be able to go out without fear of collapse. I will get more independence. I can go round the shops again. I might be able to start doing a bit more. Hopefully now a small trip out won’t end up with me stuck in bed for days.

Yet at the same time, getting a wheelchair feels a bit like admitting defeat. It sounds officially ’disabled’. I am not sure I am willing to be stared at out in public yet, or tell people I am in a wheelchair or look for places that are accessible.

I still have two to three weeks until it arrives which gives me a bit of time to get my head round it. It is an odd thought though.

After she left I managed to get back in touch with my doctor who luckily was fine about my abrupt end to the phone call in a panic! My CT scan is fine, which I am so relieved about as they did wonder if it would show tumours. They have decided though that something is really wrong and have warned me it could be something without a name. I’m being put on morphine and am no longer to eat meals but just graze on small snacks for the whole day as I’m not tolerating eating very well.

Everyone seems to have their hopes pinned on my autonomic appointment, which I leave for three weeks today.

It’s definitely been a rollercoaster of a day! Now time to go save some lilies…i

Some answers to commonly asked questions…

I’m often asked questions about my health and what is going on now and sometimes it can be quite exhausting to manage to answer it all, especially as the questions and answers are the same. I forget what people already know and filling in the gaps can be a challenge. Tie all this in that with a bad day when I struggle to think and it can get a bit much. That doesn’t mean though that I don’t like people asking, sometimes it helps to know people care. However, I decided maybe it is easier to blog about what is happening in order to give me something to do, so people who are interested can stay up to date with what is happening and also I don’t need to clog up my Facebook page with health details and what happens as a result. So to answer the most common questions of what’s wrong, what does that mean, what are the doctors doing and how am I coping…

So what is happening… turns out that science doesn’t exactly have all the answers. I have been diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), a probable connective tissue disorder and a probable autoimmune condition. However, even with that, the doctors warn me this is probably only the tip of the iceberg of what is to come. The reality of this means I am also constantly tachycardia (meaning my heart is working way too fast). A good heartbeat is about 70 beats per minute (though under 100 is normal) and may increase on standing and moving around up to another 10 beats per minute. For me my body doesn’t work like that and I can frequently hit 200 beats per minute which as you can imagine makes you not feel too well. It is a bit like getting a gym cardio workout by standing waiting for the kettle to boil to make a cup of tea! I also spend a lot of my day extremely dizzy and like I’m about to faint. Sometimes I do faint and often I fall over. In the last few weeks alone as a result of this I have given myself a black eye, torn the ligaments in my shoulder, torn the inside of my mouth by fainting and biting my cheek, bruised my chin and given myself countless other bruises. I also get unbelievably tired to a level I didn’t know was possible. Having been someone who would last on three to four hours of sleep per day I can now sleep twenty and still feel too tired to function. If I have to have a shower that is often all I will achieve in that day as it is so difficult. Alongside this, I have severe joint pains and my stomach thinks it has a never-ending bug and is responding accordingly and I am losing a lot of weight. I’m on quite a lot of strong medication for these things and it adds to my tiredness. I also have no immune system at the moment and my body is basically attacking itself. This meant an insect bite last week resulted in frequent trips to hospital as it became infected and I was unable to fight it, this caused my heart to not work properly and I felt immensely unwell. Before this would have caused me no problems at all.

However, to go down the anthropologist route of all of this. That is the medical health side of what is going on, but a medical model does not give you the whole picture, the social side must be applied alongside. So what does that look like. Well, I have had to move back home as I am not safe enough to be living by myself- I was having too many collapses and was not well enough to be able to manage to cook, clean and everything else that having your own place entails. That was very tough, as I loved having my own flat. I’ve had to move away from Brighton and so I am missing being at university and attending lectures, seeing friends and having the freedom to just go out and about. I’ve also had to stop a lot of the volunteering I was doing and my daily long walks that kept me from becoming anxious. Unfortunately living back with my Mum, I didn’t grow up here so I don’t know many people and she is 8 miles away from the nearest bus stop so it is pretty isolating. I am however finishing my degree from here and am really enjoying having an assortment of animals keeping me company throughout the day as well as having a garden to sit in again. Luckily I don’t have to go far to see eagles, deer, otters and red squirrels and that makes it easier. I also have to spend less energy doing things round the house which means my collapses have lessened a bit and I have more energy to do things like studying or watching something which was becoming impossible before. My phone bill has also reduced as I can catch up with my Mum in person instead of over the phone! From a social side I’m also left wondering what happens to all my plans and things I wanted to do. Being ill does not mean that your mind changes and you no longer have ambitions, they’re still there. It’s just your body doesn’t let you. On a more positive note, I have suddenly found time to read more fiction and watch more boxsets and have discovered that listening to podcasts and audiobooks is not something just for old people!

What are the doctors doing about it? Someone gave me the advice that when you have something wrong with you that is hard to get to the bottom of and doesn’t have a cure a doctor will either enjoy the challenges of this and be amazing or dismiss you as you’re not an easily solvable case and challenge the very ideas of medicine as being something that can fix you. I’ve found this to be very true. I have had some doctors who have said I’m too young to being having these problems and many have not heard of what is wrong and don’t know what to do, claiming these conditions do not exist, when a Google​ search quickly shows otherwise. For the most part, however, my doctors have been amazing. I have two GPs who have really listened and are brain storming options and another two previously GPs have kept in touch to see what is going on. I am being seen by specialists in London as there is no one in Scotland who deals with these things and they have been really good and often bring other specialists along. My last London consultation ended up with four consultants discussing my case many of whom were professors in medicine and were involved in latest research developments. I get to meet some interesting people! At the moment I am still having lots of tests. I have had more blood tests than I knew existed. This week I was attached to a heart monitor for several hours on one day in hospital and on another day I had a CT scan to look for tumors (not a fun experience as they put iodine in your veins which is really odd)! I have a week of testing in London soon too. Meanwhile, I am being given tablets to try and symptom control. I have a mattress lifter at home from the district nurses. This is like a hospital bed as your bed moves up and down so you can sit in it like a chair and also lie flat. I’ve also been assessed for an alarm I have to wear that will connect to a call centre if I fall over and send an ambulance if I’m unresponsive. I’m waiting to see a dietician and have an assessment for home equipment, wheelchairs etc. by the Occupational Therapist. So the NHS are doing a lot, I am just learning I have to be patient and put up with needles and tests.

The last question I am often asked is how am I coping. Honestly, I’m not too sure. It all feels fairly unreal really. I do feel surprisingly calm though, maybe because I can’t change anything and all I can do is turn up to tests and try and finish my degree. I have been really grateful for the people who have stayed in touch through it all listened. People who have sent books to read, things to do, recommended TV series or sent me photos of their travels so I can still see different places. I would change it all if I could and know if I was well enough again I would be straight on a plane tomorrow traveling​ again but for now battling it through to the end of my masters, sitting watching wildlife from the garden and finally getting to the end of reading Bleak House is enough.