Autonomic Results

I’ve not really known where to begin this blog post and so I have now stopped and started and edited and erased multiple times. It has been a bit of a strange month. I think February is always a bit of a uncertain month anyway; you finally stop accidentally writing 2017 on dates but 2018 still doesn’t sound quite right, while you’re fairly certain its not a leap year, you could be wrong, and so you remain a bit uncertain how many days are left this month, one minute its snowing and the next you notice spring flowers have appeared.

As often appears in my blog, there continues to be funding issues. While the NHS covers the whole of the UK, NHS Scotland is a separate health authority to NHS England which causes problems when you have to travel out of the health authority area for appointments and treatments. There are currently no autonomic specialist units in Scotland and so I am seen by a specialised unit in London (which is the leading and pretty much the only place with NHS places in the UK for Dysautonomia). Every time I need to be seen, have an appointment, have medication approved or tests this needs to be put in a report to NHS Highlands committee who decide whether or not it is worth funding. While my previous appointments have been funded (either straight away or through appeals), my test result appointment was turned down. This seemed really ridiculous as I had had the tests (which I couldn’t get anywhere else) and all I needed to get was the results from them, yet the committee refused this. My GP consequently attempted to get my results for me instead of me having an appointment with the consultant but the consultant refused this too and was adamant I needed to be told in person in an appointment. The first appeal after this was also turned down. Currently, because of major funding cut backs it seemed a decision was being made that all out of area appointments couldn’t happen. Eventually after evidence, lots of appealing the decisions and with one hour to spare before I lost my appointment slot, the committee agreed they would fund an appointment but only if it was carried out by telephone, with me remaining in Scotland to save money. Fortunately London also agreed to this compromise, but only as a one off exception.

My phone consultation took place last Thursday and was not an appointment with good news. I think when a consultant starts with telling you that they have one piece of good news, they are basically saying there is a lot of bad news. The good news is I have not gone into complete autonomic failure (which is very good as thats a terminal diagnosis and gives you about two years maximum). However I am experiencing intermittent failure and the majority of the tests they carried out back in November were positive. My tilt table, meal test, exercise test and 24 hour blood pressure and heart rate tape all came back positive. It confirmed I have POTS (which we knew anyway) and they’ve agreed I have some sort of hyper-mobility syndrome (which ties in with Marfan’s which is what my rheumatologist suspects). My anxiety test (which included the surprise mental arithmetic test) came back negative and showed that this does not have a psychological cause. None of this news was surprising as there had been enough hints at the time that these things were going to be positive. However the consultant is extremely concerned about my continued deterioration as well as my loss of ability to do a lot of things and what appears to be occasional limb paralysis. Consequently I’m being admitted to London as an inpatient urgently. In hospital there I have to undergo all the tests I had back in November (dreading this as I know what is coming this time), so they can see if things have changed. If they have they will then need to work out why. The plan is then that I will be admitted to rehabilitation where they will try and stop the decline and see if they can reverse anything. The consultant warned me with rehabilitation things will get worse before they get better, it will be very intensive and it will be difficult both for me physically and for them from a  medical point of view. There is no guarantee it will work. After getting off the phone with the consultant she rang my G.P. and spoke to me again later in the afternoon, as did the GP. They want me to be admitted asap but as usual the problem is getting funding. My funding application went in last week and so now I have to wait and see what will happen.

Its been really hard to find information about rehabilitation for Dysautonomia in the UK. There is very little about it online or in support groups. What I have found is it is initially quite intensive (from anyway between 2 weeks- 4 months inpatient stay) with a multidisciplinary team. A huge component of it is physiotherapy and exercise which makes you feel terrible as it causes all your symptoms to flair however you have to keep on pushing it to improve your hearts stroke rate and volume. I will have to keep up the exercises daily for the rest of my life so I do not decline again, if it works.  So far I’ve found only two people who’ve undergone it, both in their cases as outpatients. For both of them it has helped a bit and they are now able to tolerate sitting up better (though still rely on wheelchairs). I’m really hopeful it will work though extremely apprehensive too. While the news has not been good it has been helpful to finally feel like I’m starting to get more answers, an action plan and not just be passed to a different department. For now though I’m just waiting for the first hurdle to be crossed; the committee to approve funding.

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Book Reviews (January 2018)

A selection of some of the books I’ve read in January. I’m attempting to get into reading and reviewing again this year. As mentioned in a previous blog post I’ve started a book challenge which has helped with my reading efforts this month. Here are reviews of some of the books I’ve finished so far…

The Sound of a Wild Snail Eating by Elisabeth Tova Bailey (5/5)

This has been sitting on my to read pile for quite a while and I finally got around to it this month. The Sound of a Wild Snail Eating is an extremely interesting read. The author Elisabeth has Dysautonomia (the same condition as me, hence why I found the book). She became completely bedbound and in this time ended up inadvertently adopting a snail. As she is stuck in bed she reflects as to the changes in her own life, the life of a snail and what they may or may not have in common. There is a lot of information about snails in this book (they’re a lot more complicated than you would expect), however the book also contains so much more with reflections on life, what matters and possibilities in every situation. The only real downside to the book is it’s fairly short. I would be interested to know what has happened since she finished writing it.

A perfect gentle day Sunday afternoon read that could easily be read multiple times.

Eriskay: Where I was Born by Angus Edward MacInnes (4/5)

This autobiography, which I received for Christmas, tells the story of Angus and his life both growing up on Eriskay and as a sailor traveling the world. Full of history of places, tales that were passed down through generations and descriptions of daily living it makes a good social history of island and sailing life. It shows that in some respects so much has changed yet at the same time people are always the same.  The book ends with a couple of songs written by Angus. Some chapters did feel slightly rushed and went on bizarre tangents in an attempt to pack them with information but this could also be on account of the book taking on a similar approach to information as oral traditions which works slightly less well in print form.

Worth reading if you want to know more about the social history of the Western Isles of Scotland. Also makes a fascinating read if you’re interested in languages. While the book is in English, Angus was a Gaelic speaker and it adopts Gaelic speech patterns and turns of phrase.

Love of a Country: A Hebridean Journey by Madeline Bunting (4.5/5)

The first book I read of the year and was another Christmas present (proving that people know me well)! Love of a Country is a fascinating read looking at the history, geography and politics of the Hebrides. With specific focus on Iona, Jura, Eriskay, Lewis and St. Kilda Bunting travels to each of the islands and looks at how they fit into the understanding of being British, the effect of Scottish nationalism and how their histories shapes the communities today. She follows very much along the line of Benedict Anderson’s Imagined Communities and ideas of Modernity on rural communities.

One aspect I did find interesting in the book is she mostly interviews and reviews the lives of outsiders or incomers to the island rather than islanders themselves. At first I found this strange but then in a way it made sense for it is through our own understanding and communities we understand others so in speaking to those who came from a similar background to her own, this was how Bunting made sense of the Hebrides. I feel had she been from the Hebrides then she might have focused on different points or seen different things. However ultimately this builds into the idea of imagined communities- who we talk to and whose stories we are told shapes our understanding of a particular place. I think this is the book that’s given me the most food for thought so far this year.

A good read for anyone interested in anthropology and politics. Definitely worth reading if you have an interest in community, culture or nationalism.

Alexander Hamilton by Ron Chernow. (4.5/5)

Alexander Hamilton is the founding father who is on the US $10 bill and who recently has had a new increase of fame again thanks to Lin-Manuel Miranda’s musical based on his life. The musical was inspired by this biography after Miranda read it on holiday and saw similarities between hip-hop and Hamiltons life.

The biography itself is very long, which can seem a little off putting. However it’s an incredibly easy to book read and is devoid of waffle. Hamiltons life really does need all those pages! Chernow makes interesting conclusions as to the influence Hamilton had on wider proceedings in the 18th and 19th centuries and lasting legacies we can see today. He also focuses large sections of the book to tell us if Eliza, Hamiltons wife, who is often dismissed from biographies but really shouldn’t be as she was an interesting and successful person in her own right. Not knowing too much about US history and the founding fathers I found this a good place to start. Chernow is also good at attempting to rebute opposing views to his own on Hamilton and by no means ignores them, though I would like to read some other biographies to make my own conclusions as I’m not always entirely convinced.

Worth reading if you have any interest in American history, economy or politics (or are obsessed with Hamilton the Musical).

Robinson Crusoe by Daniel Defoe (2/5)

I really really wanted to like Robinson Crusoe but I’m afraid I really hated it! I would have given it one star if it wasn’t that I thought it made an interesting contribution to literature and told us about 18th century attitudes on issues such as colonialism, race, superiority and just generally terrible things the British Colonial Empire is responsible for.

As I’m sure you know, Robinson Crusoe tells the story of a man who is shipwrecked on an island for several decades and his subsequent life there. He ends up with a slave, Man Friday, who he converts to Christianity and is eventually able to return to ‘civilisation’ to tell his narrative.

Robinson Crusoe is an odd read for all its contrasting themes and narratives. Crusoe is fine with slaves but wants his freedom off the island. He is shocked by the ‘natives’ killings but happily shoots them with guns of which they’ve never seen and have no chance of defending themselves. He laments his own lack of acts of religion at the beginning of his island spell but instantly on gaining a slave feels he must convert him. He doesn’t learn the slaves language or way of life despite him being from the area so having a better idea of survival but instead ‘educates’ him and consequently Crusoe thinks ‘improves’ him. Robinson Crusoe could basically be an allegory for colonialism.

Worth reading if you’ve read everything else or want to be annoyed at something or are interested in 18th century literature. Also one final note of aspects of the book I did enjoy; the old spellings and tales of tigers in Africa. Useful for ranting at things and making you put your own beliefs in check.

Ask an Astronaut by Tim Peak (5/5)

This book is marketed for all ages but really it should be marketed as essential reading for all! Peak asked for people to send him questions on social media of what it’s like to be an astronaut in training, space and return to earth. This book is those questions with answers (and some incredible photos). Want to see if you could answer NASA logic questions? Read this book. Ever wondered about CPR in space if your floating round? What do astronauts eat? What do you miss the most? What does space smell like? All is included! There’s also quite a lot of science stuff with helpful diagrams.

Definitely read if you’ve any interest in space. It’s very accessible, informative and at times funny. It has refuelled my childhood astronaut ambition (though apparently you need to have good coordination which could be an issue…).

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.

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 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!

Unrest Review

A couple of weeks I came across the documentary film Unrest. I’ve now seen it a couple of times and really think that it is an important contribution to film as it explores the concept of illness and goes beyond the normal portrayals of it in media as something from which a character is either miraculously cured or dies from. Focusing on Jennifer Brea, the filmmaker’s life, Unrest looks at what it is like to live with a disabling chronic condition both physically and mentally, as well as how widespread an issue this is, yet is never really discussed. Instead as she puts it with chronic illness, “we disappear so you never see us at our worst”. Brea through the film successfully changes this.

Unrest started off as a series of clips that Brea made on her phone to document her symptoms and how ill she was so she could show this to doctors in an attempt to find answers, a diagnoses and be believed. These clips which have been retained throughout the film provide an accurate portrayal of what daily life is like for her. However the clips then evolved and through showing film of what her life was like before illness, with illness and interviewing others who are bed bound, scientists and medical professionals through Skype from her bed, Unrest has created a new way of making films. While Unrest focuses on Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) which Brea was eventually diagnosed with, the film however also is able to show what it is like to live with other disabling conditions too. What isn’t mentioned in the film but has been discussed in interviews since is that Brea also has diagnoses of Postural Orthostatic Tachycardia Syndrome (POTS) and Mast Cell Activation Syndrome (MCAS) and so life with these conditions is also shown.

Brea explores her own personal history as going from someone who was studying for a PhD at Harvard, who had travelled the world, studied abroad and was extremely high flying and ambitious to being bed bound and wondering what her identity is as she grieves all she lost and might have been and wonders what her existence will consist of now. She explains she feels like she has “died but forced to watch the world move on”. Running alongside her own journey of being ill is the journey of chronic illness and ME/CFS too. As is explained by professionals and looking at historical data in the film longterm illnesses that are hard to diagnosis often have histories of being believed to be psychosomatic with sufferers being sectioned and diagnosed with hysteria before a biological cause was found. ME/CFS is still going through this process. As the majority of sufferers of ME/CFS and other autoimmune conditions are female the film explores how much has this influenced historically how the illnesses have been viewed by the medical community and the lack of research that often goes into these areas.

While the personal experience and history of ME/CFS is explored, Brea also explores the stories of others severely affected with the condition around the world. We learn of a young woman in Denmark who was sectioned as it was not believed she could be physically ill against her and her families wishes. Another woman in America tells of how her marriage fell apart after she got ill and answers couldn’t be found at first, until her daughter also got sick with the same condition. A former photographer who can no longer speak, eat or tolerate any noise or light has his story told by his family who have actively got involved in research about the condition, while a 23 year old sufferer from Kent, England who spent four years of her life in hospital has her life depicted. While films exploring topics such as ME/CFS have been absent, the fact that the condition affects millions around the world is not ignored within this film. A portion of Unrest examines the protests and campaign ‘Millions Missing’ which aimed to get governments to sit up and take notice that people within their states were missing from everyday life due to severe, chronic illness that was being ignored. The Millions Missing campaign is extremely clever as it raised awareness of people who are absent from society by simply placing their shoes with a label of what the person was missing somewhere public. Its really worth looking up if you have a spare five minutes.

Unrest’s main aim is to raise awareness of chronic conditions, their history, how widespread they are and how these conditions are absent from public consciousness and hidden behind closed doors. It does this effectively and the film is definitely hard hitting and impacting on the audience. For me personally though what stood out was that the film showed that severe illness is not just something that happens to people who do not want to work and want to look for an excuse to stay at home. It shows it is very real and has devastating effects for people who very much want to be part of life and who were extremely active studying, working, being part of families, travelling and living life to the fullest before getting sick. I thought this was incredibly important as people who are ill are so often referred to as ‘benefit scroungers’ and made to feel like we are simply trying to cheat a system to avoid responsibility.

Another important element in the film for me was that it focused not just on the individual patient’s experience of being chronically ill but also the wider implications of this on those around them too; how families are affected, how simple daily tasks became impossible etc. The guilt of the sufferer and changes families had to make was explored in detail. Unrest is not without humour and hope. Being ill does not mean you stop living completely and sometimes it is the small things that many people can take for granted that can mean a lot in one person with a chronic illnesses day and this was portrayed really well. Finally a note should also be made that the cinematography and music was also fantastic.

If you have a spare hour and a half and are looking for something to watch that is different from other films, is very well put together or simply explores issues that the media usually shies away from I highly recommend giving this a go.

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.