General January Update

Happy 2018!

It’s a bit of a strange day today as I was supposed to be attending my graduation and also seeing Hamilton the musical. However as my health is an overbearing dictator I can’t currently travel and so I am missing them both. I was expecting to feel pretty sad and miserable about it but surprisingly I feel ok about it all. It’s very clear there is no way I would have been able to make the journey never mind being able to sit up throughout the events. My university have been really amazing about it too and have said if circumstances change then I can attend another graduation ceremony in the future so I don’t feel I’ve missed out. Instead for now the plan is to celebrate at home with fish and chips and listen to Hamilton instead. Meanwhile I am looking forward to seeing photos of the event. My year studying for my Masters taught me a lot, I met many new interesting people and made friends who I think shall be lifelong as well as the opportunity to explore a new city and have access to so many learning resources. Whether I can attend graduation or not those memories and experiences stay unchanged and that is what at the end of the day really matters.

MA memories

I’ve had an eventful beginning to 2018, hence my silence again. It turns out when I was in hospital just after Christmas in High Dependency I tested positive for flu (so I get to be part of all those statistics for people admitted to to HDU with flu in the news at the moment). Unfortunately I haven’t recovered very well from it and it seems I have a bit of a battle ahead. Just after the New Year it seemed to be making a return and I ended up with a chest infection. The GP visited me at home and decided I was really unwell again and needed to go back to hospital however wasn’t happy for my Mum to drive me as I was pretty bad so organised an ambulance. By the time the ambulance arrived my blood pressure was very low and they were having issues getting readings. I became extremely ill on the journey into hospital and it became very dramatic very quickly. I had to be given oxygen, had a litre of fluid squeezed down my IV line and I was blue lighted in. The paramedic meanwhile couldn’t get any readings except for my heart rate which was the fastest it’s ever been not moving. He was really nice, calm and just told me what would happen and what they would do if I stopped breathing while putting fluid through as fast as he could. My poor Mum who was following the ambulance in the car just saw the blue lights being switched on and the ambulance speed away with no idea what was happening until she arrived at the hospital.

As a result of all of this I’ve really not been too well and it’s led to quite a big deterioration. While I’ve finished my antibiotics and my chest infection has cleared my heart rate and blood pressure issues are worse and I keep getting temperatures which we think is now Autonomic rather than flu related. My physiotherapist was very concerned the last time she came out to visit me and thinks that they’re missing something so I have an appointment with my GP again tomorrow to see what we can do. On an every day level it has meant I am now struggling to sit up for any length of time without feeling lightheaded. I’ve also got very little energy. I’m not managing to make it out and about at all even with Rollo but I have managed to walk to the garden gate twice so far this year and am trying to build up muscle and reverse deconditioning by doing that.

Made it outside for the first time this year

First time outside this year, walking to the garden gate.

While the start to the year has not been good health wise I’ve managed to stay fairly positive. My research job which ends in February has been going well and I’m now formatting what I’ve found into a comprehensive document. I’ve also started a physics course as I always wanted to study physics at school but never did. I am really enjoying it and it’s something completely new to think about. Alongside this I and a few friends are aiming to complete a reading challenge this year where we have to read 50 books, each of which must fit into 50 prompts. These range from a book written by an author who shares your last name, to a book published the year you were born, an allegory to a book you saw somebody else reading in public. I think it should keep me busy and it’s good to have a reading focus!

Reading about Hamilton as a musical alternative

Reading about Hamilton as an alternative to seeing the musical.

The most exciting news of 2018 though has been finding out that the paper presenting the autism and mental health campaign that I was a co-researcher of last year has been successfully submitted for publication. It was peer reviewed at the end of last year and now it’s just a case of final paperwork and it should be made available in the next few months. This is incredibly exciting and I’m sure none of us in the first meeting we had over a year ago when we choose to focus on mental health as a topic had any idea what sort of journey we were about to go on or how far our research findings would travel. I can’t wait to see what will happen next!

An early report of our findings.


The Final Post of 2017

I am writing this in the middle of my 23rd hospital admission of 2017. I write ‘middle’ optimistically as I am hoping to get out tomorrow and get to go home. My Mum caught a cold at work and kindly decided to share it with me for Christmas. Unfortunately colds and POTS really do not mix and so I have been admitted while I get through the worst of it so my heart can be monitored and I can get IV fluids to minimalise symptoms as much as possible while the cold runs it’s course. There has also been the term banded round of ‘proper flu’ which meant I had to have a throat swab and await to find out tomorrow. This could determine when I get to go home. To aid with my chances of going home I now have one sheet only and the window open fully (it’s frosty outside) so all temperatures which could imprison me here are banished.

This hospital visit has been surprisingly entertaining. I’m on high dependency again which means I am provided with my very own personal interactive entertainment unit. If I hold my breath and lie very still it will play a tune at me. If I stand up and move around it will flash colourful lights. Who needs a game console!

Furthermore, a vacuum caught fire in my room. If that’s not an ice breaker (literally) I don’t know what is.

I’ve also been a spectator of the great nurses station debate: when will the Christmas decorations be taken down? There is no knowing when a successful orator will win this debate and so each time I see the Christmas tree still standing on the ward it is a bonus!

While I deeply dislike inpatient life this actually hasn’t been such a bad experience as it often is. I have a locum consultant who is a cardiologist, has heard of POTS and actually knows what to do which is so exciting and takes the stress away of having to advocate for myself and tell the doctors what treatment I need and what my condition is. My physiotherapist has also met with the ward sister and set out a plan of what I need. I have flash cards I can display on my table if I need something so a passing nurse can see (I can become fairly nonverbal during moments of extreme unwellness) and they are no longer implementing their renablement programs on me which only set me back further.

My test results have also come back from London confirming I am severely affected and they want to keep me on their case load if I can get funding from Scotland. That will be the challenge to enter 2018 with.

So while not the end of the year I would have planned it’s been surprisingly alright all things considered.

It’s been a funny year 2017 so to finish off blogging for this year here are some statistics:

⁃ 12 months

⁃ 23 hospital visits

⁃ 49 litres of IV fluid

⁃ 4 ambulance rides

⁃ 74 books read

⁃ 7 series of Doctor Who watched

⁃ Five photos accepted to galleries and magazines

⁃ 28 blog entries written

⁃ One masters degree obtained

⁃ Two attempts at conference speaking

⁃ Some of the most supportive friends and family members I could have asked for.

I hope you had a merry Christmas and a very happy 2018 ahead!

Positive Updates

I felt the news last week was a bit more on the negative side so this post is dedicated to the positive things that have happened in the last week or so.

Firstly I’ve got myself a job! I am so excited about this and it has lifted my mood so much to be able to get up each day and have a purpose and be able to do something useful. I am doing some remote voluntary working for an organisation called Spoonie Survival Kits. Spoonie Survival Kits makes little kits filled with surprises for people who are unwell. The items included are all designed for people who are chronically ill and the organisation is also run by people who are unwell themselves. I have a contract for flexible work until January making a directory of businesses run by people with illnesses and disabilities. Having this work really means a huge amount. I’ve been feeling quite down lately at feeling like I’m not contributing and don’t really have anything to work towards so this has been a boost I needed. Also it is extremely flexible which is exactly what I need. I can choose how many and when my hours are so it really works round how I am feeling/ hospital stays etc.

I’ve also had some positive news from my Occupational Therapist. The council are looking at building some accessible adapted housing locally and the OTs have been asked to put forward names of people who need this type of housing and they’re thinking I might be eligible for it. The houses haven’t been built yet and might take several years but they would be built with the people moving into them in mind. As anyone I have spoken to lately will know one of my top goals is for independent living. I had a chat with the OT about the support I will need, which is quite a lot, but not impossible. Also having an accessible place to live in would make a difference as while where I live in now is sort of working with adaptions to an extent but we are limited as to what can be put in as it is rented and as I keep deteriorating I will probably need more in place. Staying in an accessible hotel room in London also made it clear that accessible accommodation would be really helpful and make a big difference. Also I would be living in an easier to get to place which would be super helpful as right now I rarely see anyone who isn’t my Mum, stepdad or health professionals and following the ambulance coming off the road and into a ditch incident I am pretty isolated here if anything happens.

Meanwhile while accessible housing seems a little bit further away then we first thought, I’ve had a room revamp to try and give me a bit more of a sense of my own place again. We’ve set it up a little bit like a bedsit and I now have a kettle, mini fridge and a microwave in my room so I can make myself a cup of tea, have some more control over what I eat (although I do have meal prep support) and also just feel a little bit like the old me again. To fit these new items in we had to completely change my room around and I now have a mini library corner too so that is pretty exciting!

I had an anonymous delivery which simply says ‘from a friend who thought you might like this’ from Wonderland Letters come through the post. This really was a wonderful surprise. Wonderland Letters is a letter on a completely random subject (this one was all about snails) with snail like activities to go with it. The person behind the letters included information about herself and she too suffers from dysautonomia. It was really lovely mail and I am thoroughly enjoying working through the activities and learning about the information that came with it. Its also been positive to read of someone with similar if not the same condition who manages to find beauty in daily things and that has inspired me too. If you are reading this blog post and are the sender behind this, thank you very much!

Also the final thing to mention in this post of positive updates is as I’m sure everyone is aware we are only a few weeks away from Christmas. Christmas and I get on very well and I am extremely excited already. As I know it will seem quite different this year I have started to prepare in advance. I have a one foot Christmas tree for my room with miniature decorations, a Christmas duvet cover and plan to spend time watching all my favourite Christmas films too! We had our ACM this weekend (Annual Christmas Meeting) and so we are now all set to go!

November Medical Update

I’ve had another few weeks of ‘medical stuff’ commencing with a longer than usual hospital stay starting the weekend before last (my fourth hospital admission this month!). I went to see the GP out of hours in the evening with severe joint pain that my painkillers just was not getting rid of. They decided I was really dehydrated and needed IV fluids while I was there. While waiting for a room to become free so I could get a cannula put in I collapsed in my chair. I have no memory of this event but apparently it involved people being kicked out of rooms in A and E back to the waiting room and me being wheeled into a room very quickly. Several litres of IV fluid later and I was still really unwell and so it was decided it was best to admit me for the night. There was quite a bit of hassle finding me a bed, but with the advantage of being a regular I have now visited enough times to have got the loyalty customer prize of the A and E staff turning up with a portable DVD player and a bunch of DVDs while I waited. I spent a couple of hours revisiting my childhood watching ‘101 Dalmatians’ and had a general catch up with some of the staff.

I was admitted to a high dependency ward and attached to a telemetry (a machine which monitors your heart rate). The hospital was pretty busy and at one point in the night the man in the bed next to me fell out his bed and was stuck on the floor. I woke up to see someones legs and feet sticking under the curtain round my bed which gave me a real fright! Luckily he didn’t seem to be too injured and they got him back into bed. As is the usual experience when I am admitted to the hospital ward they didn’t really know what to do with me. I also think people find it hard to understand that you can be sick and young. There were some problems as the next day they decided I needed to be ‘reenabled’ by which they meant I had to sit up for breakfast and until after the doctor had been. I can’t really sit up, at least not for any length of time as my blood pools into my feet, I become really unwell and collapse. They also removed my wheelchair to the other side of the room and stopped helping me with things listed in my care plan. Consequently I stood up and walked across the room and set off all the heart monitors and everybody came running in. My physiotherapist also turned up on the ward and wasn’t happy that they made me sit up and managed to speak to them and I was allowed to lie down again. It was very stressful though as I know what happens if I don’t do these things and being ‘reenabled’ won’t re-enable me or cure me but rather drag out my hospital stay as I will keep collapsing. At some point as a result of all of this I am supposed to be having a meeting with the hospital, my GPs and physiotherapist so we can come up with a hospital care plan that makes it clear what I can’t do and what help I need. Unfortunately with having rare illnesses people don’t always get it.

Shortly after getting out of hospital I had my trip down to Glasgow to see a rheumatologist about suspected Ehlers-Dalos Syndrome and the joint problems I have been having. The journey down was a little bit of a nightmare and took a lot longer than we expected as my Mum, who was driving, had to stop frequently for me to lie down as I started to faint. By the end of the trip we were stopping every twenty minutes for me to lie down for half an hour or so before I stopped having pre syncope symptoms. However luckily the route between Glasgow and here is really beautiful and we got to stop in parking spots that overlooked snow on mountains so I shouldn’t really complain!

When it was my turn to see the rheumatologist they called my name and the ultimate embarrassing moment of the day happened, I fell over! Not only did I just fall over, I fell over three times in succession as my legs would just not hold me up! I don’t think that a waiting room of people is the best place for this to happen but luckily the consultant was very nice about, saw it was very genuine and came over to help, it also helped them see what happens to me several times a day!

My rheumatologist appointment took nearly two hours and involved having to see several people as no-one was exactly sure what was wrong but could tell something was very wrong. I do know I have lost more weight (not good) and grown taller (strange but explains why everything else has shrunk!) It seems that while I would fit the criteria for Ehlers-Dalos syndrome they’re not sure that is what I have. Instead they think I might have another genetic connective tissue disorder called Marfan Syndrome. Interesting they are the third place to mention Marfan Syndrome so I’m thinking there might be something in it. Marfan Syndrome is caused by a gene so I will have testing to look for this, it can take up to two years after the test though to get the results as there are thousands of variations that the gene has mutated to in people that they need to look for. Its a fairly expensive process so they are fairly sure I have it to put me forward for it. I made the mistake of googling Marfan Syndrome and was unimpressed that the search told me that it’s progressive, often causes sudden haemorrhages, sudden ruptures of the aorta, lung collapses and all sorts of wonderful other things. A bit more research since though I’ve found that you get yearly MRI scans, echocardiograms and see lots of specialists so they try to see problems before they really cause issues and then you can have surgery and things to correct it. Some people are also only mildly affected. Unfortunately as the rheumatologist told me there is no cure and they can do very little to improve my quality of life- which is pretty rubbish!

They also think there is a lot more going on than simply POTS/Dysautonomia and a connective tissue disorder too so they don’t think I’ve got to the bottom of it all yet. I think by the time this is all over I will have a much longer medical alert bracelet! They took 13 bottles of blood for various things (not a fun experience and they went through several veins so I’m sporting technicolour arms at the moment but at least everything can be ticked off). I am also being referred to a geneticist, back to cardiology and also to see gastroenterology as soon as possible.

I made it through the trip back home with lots more stops and even went through the first snow storm I’ve encountered this year!

Also as a final note I’m really sorry for being incredibly behind with communication this month. If you’ve sent me an email, text, letter or message I will get back to you as soon as I can but it might take me a little while.

How I nearly had Astronaut Syndrome

As a child for many years my main ambition was to grow up and be an astronaut. My room consisted of posters of stars and planets, my bookshelves of tales of outer space and the only barbie I ever owned was hung from my bedroom ceiling in a homemade astronaut outfit. For a while aged about 4 I had an email correspondence with NASA and they answered younger me’s questions about their space missions and what I needed to do to become an astronaut myself.

Fast forward to the present and while I no longer have ambitions to be an astronaut, though it would be pretty cool, I was slightly too excited to learn that POTS, one of the conditions I’ve been diagnosed with, was almost called Astronaut Syndrome. I’m very disappointed that it was not!

It turns out that astronauts after being in space for any amount of time on returning to earth develop the same symptoms as people who have POTS. Their bodies are unable to respond to gravity and they are unable to sit or stand up for any length of time, their Autonomic system (which regulates things we don’t have to think about such as heart rate, temperature and breathing) doesn’t work as well and they often have problems with fainting. While their condition is not lifelong and they are able to undergo processes for their bodies to work on earth again the similarity between the two is incredible.

It was hoped for a while that in studying astronauts return to life on earth and what worked to improve symptoms the medical community could transfer this knowledge to help patients with POTS. Unfortunately it turns out that this is not so straightforward as there is nothing exactly wrong with astronauts bodies. Nothing has really changed, they just need to readapt. For people with POTS however there are neurological changes that have taken place meaning the wrong messages are sent and we cannot control things that other people can automatically. Still there maybe things that could still be learnt and I’m following a current research project into this with interest.

It also has raised for me the question as to what would happen if you put a person with POTS in space, away from gravity. Would our symptoms improve? After all there would be no gravity to pull our blood downwards so the fact we can’t regulate this wouldn’t matter. I’m more than willing to volunteer myself to find out and revisit my childhood ambition to become an astronaut after all!

The London Diaries: Part Two

Tuesday 7th November: 17:55

Another day of testing over. I didn’t have to be at the unit until late morning today but was nil by mouth again beforehand. I finished off recording blood pressures, heart rates and carrying out my list of exercises on my twenty four hour tape before going in as well as managing to have a collapse at the hotel before leaving.

Today at the unit was tests to see my response to food. The scientist running the tests went into a lot of detail to explain what they were looking for. She explained that after eating and when digesting everyone has blood redirected to their stomach to help with this process. For people with POTS this happens at the cost of the rest of your body working well. For many people with POTS eating even a small meal can make you feel like you’ve eaten too much and have symptoms other people may only have once a year at Christmas for example when overindulging. The problem is with this is that you have the symptoms even when you eat something tiny.

The test itself consisted of being back on a tilt table for ten minutes while my heart rate, oxygen levels and pulse were monitored before lying down and recovering from this. I then had to drink as many grams of sugar as I am kilos mixed with water (this was really difficult and incredibly sickly!) This is supposed to replicate the number of calories in a normal meal. I had to drink this lying down through a straw, very tricky, as my body responds adversely to posture changes. After drinking the mixture in five minutes I was left to lie in the dark for forty minutes with five minutes observation checks before being tilted once more for another ten minutes.

While the scientist said she can’t tell me much about the results and isn’t supposed to tell me anything she did say there was a massive change between the two tilts before and after food. I could feel a difference too, feeling particularly bad after the second tilt and during it.

After these tests I was allowed to leave again until tomorrow. I ended up returning to the hotel and sleeping the rest of the afternoon away to recover. Tomorrow I have an exercise test and have to move hotels, neither of which I’m excited about.

It’s been a bit of a hard hitting day as I’ve realised how far from right things are. The scientists and doctors keep picking things up to that show that my body is not working well, things which I’ve always not paid any attention to but actually indicate more serious problems. I’m also very relieved to have the evidence that yes there is something very real going on and I’m not making it up. I have been saying for a number of years something really is not right and in a way it’s reassuring to know that that is the case after all. I just wish I was getting happier answers or fixable conditions!

Wednesday 8th November: 21:01

Another tough day but fortunately tests are now all completed. It was a tough start to the morning but I wasn’t nil by mouth until mid morning and didn’t have to be at the hospital until early afternoon. As we had to check out of the hotel the hospital had booked us into we spent the first part of the day in the hotel lounge until it was time to leave.

At the hospital this afternoon I had my final test looking at my tolerance to exercise. This was the simplest test I’ve had to carry out but also the most interesting as I was able to see the results as they happened on screen in front of me. To begin the test I had to lie down until my pulse and blood pressure base lined and then I had a 5 minute standing test (just had to stand up for five minutes while my sats were recorded- this has become difficult for me). This in itself was interesting as it was very clear I cannot regulate my pulse, temperature or blood pressure at all while standing. I then had to rest for another ten minutes before my pulse and blood pressure returned to base line level before the real challenge began, cycling while lying down. I had to cycle for nine minutes and every three minutes the scientist took my blood pressure and pulse and increased the bike resistance. I managed to set off alarms as my heart was going too fast towards the end. I then had a ten minute lie down with monitoring every one minute before being asked to stand up for another five minutes. Once again my heart rate shot up and she was forced to end the test a few minutes in as my blood pressure plummeted and they said I was about to faint. So that ended my tests at the Autonomic Unit.

Next step is a multi disciplinary team meeting next week to discuss my results and put them all together and an action plan is formed. I then get sent a letter and return to discuss it all with my consultant. While the scientists and doctors aren’t supposed to give much away this week they’ve all said they’ve got a lot of information and I now know my pulse, blood pressure, temperature and breathing are all affected.

Friday 10th November: 13:32

I made it home and am so relieved to be back in my own bed! Yesterday I didn’t have any tests but did have to sit up for a lot of the day which was really tough. I found a park bench to lie on for a lot of the afternoon and ended up crashed out on the station floor in the evening. The sleeper train last night was amazing. As nobody had booked the accessible room and as I rolled along with my wheelchair they moved me to the accessible room. The extra space made it so much easier! I also visited a cycle shop in London and Rollo is now kitted out with lights so I’m a bit safer rolling along the single track when it gets darker in the evenings.

Arriving back I have also heard I qualify for advanced rates of PIP for both mobility and daily living. It’s a bit of a shock as I don’t think of myself as disabled even though things are difficult. I’m just me. Now just to wait for test results and rheumatology later this month.

The London Diaries Part One

Friday 3rd November 2017- 16:00

Super nervous. Setting off from home in an hours time to begin the long journey down. I’ve got a twenty minute drive, three and a half hour train journey and then a 9 hour sleeper train to get to London for my tests and I’m kind of dreading it all. At least once I’m there I can crash until Monday when the tests begin. We spent the afternoon packing, well my Mum did, turns out the biggest piles of things to take was my medication. We also have A and E protocols for if I end up in a hospital that doesn’t know me on the way down as well as a whole load of fact sheets on my conditions as it’s rare anyone has heard of it. I had a trial run with this information yesterday. I was just about to sleep when I suddenly felt really unwell and my pulse hit 176 while I was resting. A first for me to have that happen out the blue. It was pretty scary. I got taken to hospital by ambulance and the paramedics were able to use my fact sheets. I was border line being admitted but everyone needs these London tests to happen and I had only last been in hospital earlier that day so for now we’re going to see how far I can get on the way down. No pressure at all! I’m very tired from it all and I can’t get my pulse below 90 which has worn me out. I’m hoping it means I will be able to sleep on the train as a result. I’m just trying to keep the nerves at bay. It will all seem like an adventure in a few weeks hopefully!

Saturday 4th November: 10am

Successfully arrived in London and so very relieved to be here! The train down wasn’t brilliant but not disastrous either. The hardest part was sitting on the train to Glasgow as that felt very long and I was ready for a nap by the time we arrived. Luckily we didn’t have to long to wait until we could get on the sleeper. This was definitely a bit of an adventure as there is not much space, which seems obvious, but I didn’t fully consider it. Rollo, the wheelchair, just squeezed in but took up the floor space so we squeezed on to the berths and rolled him in. I was very nervous about getting a sleeper for the first time however there was really no need to be. It was an incredibly comfy bed, you get given an eye mask and ear plugs and there are no announcements. I managed to sleep on and off on the way down. It was fairly bumpy but you get used to it quickly and it only became strange when we stopped. We arrived in London nearly an hour early and were woken up by the assistance people with their van to take us through the station and help us get off the train. The only downside of this was an extra hour to be up in the day.

Squeezing Rollo on the sleeper

We’re spending the first night in Premier Inn Hub in London before we get put up in hospital accommodation for the tests. Premier Inn were absolutely amazing! We arrived at 9.30 in the morning (check in is at 2) to drop our bags off. As I was a very grey colour and having presyncope symptoms they however offered to let us check in then and we only had to wait ten minutes for the accessible room to be sorted and that was it. We’ve consequently just checked in and so relieved that this has been made easier. The staff here are really friendly too. It’s my first time staying in an accessible room and it’s been well adapted with a shower seat, emergency alarms and more space. Not sure what will happen the rest of the day.

Sunday 5th November: 16:00

Had a very rough day so tucked up in bed in a new room dosed with strong painkillers. I think I’m paying for the traveling and a mini trip out to Hyde Park yesterday to people watch.

We moved Rooms today as for the rest of our stay we are being provided with accommodation by the hospital who are carrying out my tests. We’ve been put in an NHS hotel which is a novel concept for me. It’s a really nice hotel which provides accommodation for people who have to access services at the University College London Hospitals but live further afield. Apparently most of the people who stay here are seen either by the same place as me, are getting transplants or have rare forms of cancer. Everyone staying seems really friendly and there is a sort of day room where you can go and sit. There’s also a laundry that’s free to use, you can borrow Kindles and DVD players from reception and the rooms are well stocked with drinks and snacks. Since we’ve checked in I’ve been stuck in bed though so not really been able to do anything today. Tests start 8.30 tomorrow morning and I’m nil by mouth from tonight.

Monday 6th November: 17:39

Feeling absolutely deathly. I knew today would be tough I just didn’t appreciate exactly how tough! I got to the Autonomic Unit at 8.30 and had to wait in a day centre for tests to begin. The day centre was a room of recliner chairs where patients sit until they are taken away by porters and in between tests. I had my blood pressure and pulse done here which were already not too good. They couldn’t pick up my oxygen sats as my hands were too cold so I had to sit holding a bottle of hot water they gave me. Apparently the cold hands thing is an Autonomic thing, I always thought it was just me!

About twenty minutes after arriving I was taken to a different floor for my tests. A doctor who was really nice and once she found out I was interested in the details of the tests gave me lots of information ran them. After a mini consultation going over my daily symptoms I had to lie down for part one of testing: seeing how my Autonomic system responded to everyday things. I was attached to an ECG machine, oximeter and had a cannula put in my arm. I had to carry out a number of breathing tests, had an temperature test where ice was applied to my arm, had my reflexes tested, had some lying down to standing up tests and also had a stress test. The stress test consisted of counting backwards in 7s from 100 but apparently nothing changed on my sats so they started giving me quick fire maths problems instead. After this round of tests was the tilt table test. The tilt table test consists of being strapped to a table which is then tilted upwards 60 degrees- it sort of replicates standing up and can last between 10 and 45 minutes. The doctor made the decision from my readings to lower me back down after ten minutes. I didn’t faint but felt very dizzy and light headed. They took quite a lot of bloods to check for autoimmune diseases and also to check adrenaline levels when I was both lying down and on the tilt test.

While I didn’t get any results and couldn’t see any numbers from today the doctor did stop several tests early and said they had a lot of information that would be useful from the tests so I’m expecting it definitely showed something. My blood tests get sent to Oxford so it will be a while before I hear back about those.

After a 30 minute lie down as I wasn’t well enough to sit up, I was wheeled through to another room for part two of the day. I had to fill out quite a bit of paperwork agreeing for my test results to be used in research (there’s currently very little research so this will be interesting). I was then attached to a blood pressure cuff which will take my blood pressure and pulse every twenty minutes for the next 24 hours. I have to write down every twenty minutes what symptoms I’m experiencing and what I’m doing as well. Alongside this I have quite a bit of homework to do with the blood pressure cuff on including walking up stairs, standing up for five minute intervals, walking briskly and carrying out activities I know exacerbate symptoms. It’s not too much fun.

After all of this there was a bit of a break where I had lunch in the hospital canteen and then sat up in the day patient room before seeing a doctor this afternoon. The doctor appointment was a little bit pointless as it was to check I was well enough to have the tests I had already had. It was also to answer questions which unfortunately she didn’t know the answer to any of mine so will have to email her boss but isn’t sure if they will reply before I leave. The doctor was surprised I hadn’t been admitted as an inpatient for tests on the ward and left us with the parting words of to go straight to A and E of my symptoms become particularly troublesome. Not very encouraging.

After all of this it was mid afternoon and so it was time to head back to the hotel and begin my homework of activities. We arrived back at the hotel for me to have a near faint on arrival and so I’ve not moved consequently for the last couple of hours except to record my diary and do a sit and standing test. I still have the stairs and other homework assignments to go.

Unfortunately I’m really feeling far from well after today and am struggling to move at all. I’m well dosed up on morphine though it’s still all feeling a little bit unbearable. I’m holding on to the fact that these tests are the only way to get the answers I really need. Luckily I’m not due back at the hospital until 11am tomorrow morning when I have a meal test and have to have two more tilt table tests. We also have to move hotel tomorrow as the one we’ve been put in is fully booked so the Autonomic Unit are moving us somewhere else, we just don’t know where yet.