Collecting Evidence and being a Spy

Evidence has been collected…

Data has been gathered…

A case has been made…

There has even been a body involved…

…Only the body isn’t dead and it’s mine!

Being close now to my first week of hospital London appointments I have been busy trying to collate as much evidence of what is going on as possible. The thing is the symptoms are all a bit strange and not always possible to provide evidence of on command. As a result, I’ve been armed this week with camera and notebook to record everything that may be relevant. To taking pictures of having one leg that looks like it belongs to a snowman while the other simultaneously looks like it belongs to a smurf (I have extreme circulation issues) to photographing oximeters showing oxygen levels in the 80s to my pulse changing from 62 to 190 from simply standing up. I also have alarms going off every 6 hours to remind me to check my blood pressure. I am basically seeing what it would be like to be famous and paparazzied. The real reason though is I’m determined to hopefully get as many answers as possible in a few weeks. The only thing is I’ve become so used to many things that shouldn’t be normal it is hard to know what is a symptom and what isn’t. This has caused some interesting discussions when I’ve been in trouble for something that should have been a 999 call resulting in me ignoring it all and wondering why I feel really horrible. Most doctor trips and many conversations with my Mum have now led to an ever increasing list of when I must call an ambulance.

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To keep with the crime theme I have also been electronically tagged this week! The only difference being my electronic tag is attached to my wrist, not my ankle (and I can take it off). Despite the fact I really didn’t want to I have finally given into Telecare. This is a system in which I have to wear this tag at all times which has a button on it that I can press and also a device that can detect a sudden change in space so detects if I fall down suddenly. From either of these, an automatic call is made to a centre, which will call an ambulance for me if I’m unable to (unconscious or can’t get to a phone) and will also alert other people on a list of contacts they’ve been given. It’s a pretty clever system and if I was about 9 I definitely would have pretended I was a spy with this device on my wrist (ok… I might of anyway!). Only downside is nobody has yet seen the market to make these look vaguely fashionable…

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In other news, I managed to, for several days, trick my body by deviating from normal events. I’m no longer allowed to eat meals because the results are disastrous. Instead, I’m now on a diet of eat-a-very-small-snack-an-hour. It worked for several days and then my stomach cottoned on that it was being tricked and is now deciding not to comply! I’m currently awaiting to see if a new cocktail of drugs has been found for me to combat this.

I’ve also been issued with morphine at home so a significantly less number of hospital trips as a result of pain lies ahead. Yay!

The other medical event of the week has been a referral to physiotherapy with home visits. I’m not too sure how long this will take.

Non- medical related, I got my results back from another two essays this week and simultaneously got my best and worst degree results so far. Luckily nothing too disastrous and as long as nothing goes too badly with my dissertation I’ve got my fingers crossed to graduate with distinction. However, if I’m honest I feel a pass shall be a good enough achievement as I’m down to about an hour only a day of productive study time.

However, the biggest achievement of the trip goes to my trip to Tesco’s! I may have only managed an aisle and gone at a time when there were no queues but this was a massive achievement for me and nothing disastrous happened in the process! Who knows next week it could be Ben Lomond!

June’s Book Reviews

Most of the time I am awake I am either studying, reading or watching boxsets at the moment. While I’ve always been a reader and this has developed into more of a lifeline. So I have decided the end of each month, the Thursday blog will be devoted to a review of the last month’s books.

As the start of this month was my birthday and many people gave me books as presents so I have read a more diverse range of books than normal. The first three were all given to me for my birthday and the last two I got with birthday money to help with my dissertation in the first case and just for fun in the latter.

Night Waking by Sarah Moss
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This was the first book I read this month. I actually ended up reading it cover to cover in one sitting because I could not put it down and had to find out what would happen next. If you are going to read it, I suggest preparing a flask of tea and packed lunch in advance! The story follows Anna and her family as they move to an island off the West coast of Scotland. This island, while fictitious, is based on St. Kilda (think middle of nowhere, stormy weather but plenty of wildlife). Anna is an academic, working on a book about the concept of childhood, while simultaneously disliking being a parent to her own two children and trying to get them to leave her alone long enough so she can write. Meanwhile, her husband is studying birds on the island and getting ready to invite tourists to stay in the holiday home that they have refurbished. In the midst of all of this, the skeleton of a baby is found in the garden and there are mysterious noises coming from the attic in the house. The novel switches between the past and the present. The sections set in the past (1870s) are a series of letters written by a midwife who has been sent to the island to work out why no babies being born are surviving longer than a few years at most. While she is there to assess child birth practices and living conditions she suspects her reports are not being sent back to the mainland…

This book is an easy read and while being light enough that you don’t need too much concentration to get through it, it does have enough plot twists and a strong enough story line that it is far from boring and you really have no idea what will come next. It also raises questions around is there always a right and wrong answer or can multiple people who make diametrically opposed decisions be equally correct at the same time? Furthermore, the book also looks at issues of equality and elitism without dragging the reader too much into these subjects they lose track of the story. From different social classes, landlords and tenants, to women trying to progress in academia it shows that there have always been barriers in the way of the many put there by a few which silence those at the bottom of societies hierarchies.

Gilead- Marilynne Robinson
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I would never have picked this book off a shelf to read so was a bit apprehensive. However, it turned out to be an interesting book nevertheless. The Reverend Ames is dying and has decided to write his memoirs, family history and advice in a book for his seven-year-old son. He is aware that his son will not be told these things by him so the book is a collection of what he thinks his son should know and what would have information would have been passed on should he have lived to see his child grow up. It is a simple idea, but quite a powerful one as Ames reflects on his own life, prejudices, and decisions as well as those of family members before him.

There is no substantial plot line and nothing extremely shocking or exciting happens. However, if you are looking for a gentle read then this is perfect. However beware there are no chapters, the book runs straight through and is at times quite fragmented as a result. It is quite possible though that this fragmentation is deliberate and provides a tool to show that Ames brain is also switching from subjects and memories. The main frustration I found is I wanted to keep telling him to stop writing and go and spend actual time with his son and build memories while he still could.

Home- Marilynne Robinson
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This novel is by the same author, set in the same town, at the same time as Gilead. However, it focuses on another characters perspective. I much preferred this novel to the first and understood the characters, their motives and actions far more than I did of Ames. Focusing on siblings Jack and Glory who have returned home as their own father is dying (Robinson likes to focus on death!) they look back at their childhood and what has happened to them since as well as the decisions they have made. It many ways the themes are very similar to that of Gilead, only the reflections are happening by younger characters who have more dramatic stories to tell and often cross what existed as social barriers then.

I really recommend reading the two books together as it shows that how one person may interpret an event can be polar opposites to someone else. Again the story is a bit disjointed but this time round it is much easier to follow. Prepare for plenty of unexpected twists!

The Man who Mistook His Wife for a Hat and other Clinical Tales- Oliver Sachs
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Sachs wrote in the 1980s several books which all look at psychology and neurology but not simply from a medical lens. One of the first people to combine the medical and social model of illness and disability, Sachs presents case studies of patients that are not just a list of traits and conditions but also show the person behind all this and their personal experience. While this is more commonplace now, at the time of writing this was quite unusual and medical and social models did not mix as they do today. Consequently, this book is incredibly interesting to see how this has developed over time.

Furthermore, Sachs has a really easy to follow and humorous writing style that makes you forget you are simply reading medical cases and as a result, you wonder what happened to the patients. The version I read had postscripts after the cases where Sachs had added more information about the patient’s, correspondence he had with other medical professionals and discoveries that had been made since. Interesting fact from this book was that Parkinson’s Disease was not discovered in a hospital or clinic but by psychologists who were people watching on a street and observing that some people had very different movements. It had often been accepted before and had not received much medical attention! Consequently social and medical sciences really do need to work together!

Miranda’s Daily Dose of Such Fun- Miranda Hart
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The best book of June goes to this gem! This book consists of 365 fun things you can do- one for every day of the year. They are all a bit silly but funny. Written to help people with anxiety, depression but very much suitable for everyone. This week has consisted of everything from singing Christmas carols, having an imaginary conversation with a shop mannequin to designing a toga and thanking a traffic warden or bank manager. Such fun!

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

Hospital Bag 101

Being autistic, I am a person who likes structure and routine. I have decided therefore to structure the blog a little bit and plan to post twice a week when I can on Mondays and Thursdays. Monday’s blogs will be health updates and anthropological musings about chronic illness and Thursday will be reviews and hints and tips I’ve learnt along the way.

So without further a do, here is my firsts hints and tips blog of living with chronic illness- the hospital bag…

Since the start of June, I have had four trips to hospitals and only one of these was planned. While I try to stay out of hospital; I’m not always very good at it and sometimes there is no choice but to go and see a doctor, normally at this point it is urgent.

The first of these trips I went to hospital, as I usually do, armed with a coat, a book, a bottle of water and myself. I expected to be seen, maybe given some fluids and stronger pain relief and sent on my way. That didn’t quite go to plan and I ended up having to get my Mum to bring me some things into the hospital. I learnt that it is not too easy to direct someone else to what you want, when you aren’t there and limited mobile battery can get in the way too. My Mum turned up with the wrong phone charger, clothes that had been waiting to go to the charity shop and forgot any toiletries. While I appreciated her help, it was a stressful situation for everyone and so now I go into hospital prepared. I have a bag already made up that sits next to the front door so whether I’m taken in by paramedics, go by myself or send someone to my house to collect things all that has to happen is for someone to lift the bag. Easy!

The last few hospital trips I have edited what goes in the bag, removing some things and adding more. I’m pretty happy with what I’ve got now so thought I would share what for me is the idea hospital bag to help or inspire.

Clothes
The thing with this is you never know quite how long you will stay. I try to take 2-3 days of clothes with me and can get someone to change these from my house if I’m in longer. I always put a few favourite items in as it is the little things that can make you smile.

– Loose fitting tops. When I’m in hospital, I’m usually attached to various machines, wires and cannulas that medics need easy access to so I make sure my tops aren’t restricting.

– Light cardigan- lets face it hospitals are often unpleasantly hot but sometimes you want to cover up or if your being taken for scans etc. a cardigan can come in handy.

– Comfy PJ’s. This is the most important item in my bag for me. I am not a fan of hospital gowns with the slits up the back, that in my years of many hospitals, I have yet been able to work out how to tie properly and remain decent! I would much rather be in my own clothes. I normally take several pairs in that are all comfy and baggy and again allow easy access to anything I might end up being attached too!

– Spare underwear. Running out isn’t fun!

– Flip flops. If you need to move to a wheelchair to go somewhere or use the bathroom it is easier to have slippers or flip flops that you can slip on easily without the hassle of laces etc. You don’t want to end up with another injury from standing on something in bare feet…

Toiletries
Some hospitals seem to provide these and others don’t. It can also depend how busier they are too. It can be comforting to have familiar smells and items from home either way.

– Shampoo

– Soap

– Toothbrush

– Toothpaste (I feel these are self-explanatory)!

– Hairbrush- I forgot to put one in my bag for ages and always felt horrible, similarly hair ties can be good for keeping your hair out your and the doctors and nurses way.

– Dry shampoo and wet wipes. If I’m feeling really bad the last thing I’m going to manage to do is shower. It makes me symptomatic at the best of times. These things can be a lifesaver and while I may not feel physically better being clean, I do feel mentally better.

– Moisturiser. Hospitals are hot and if your feeling run down, the last thing you need is itchy skin

Fun Things to Do
Hospitals can be boring, stressful and days can seem long. It’s a good idea to having things you can do that are easy, fun and provide distraction.

– A good book or charged e-reader. I try to take something that is long enough that it will take a while to read but simple enough that I don’t need to concentrate much and won’t get distracted by surrounding noises.

– Headphones. Music, podcasts and audiobooks are normally how I get through a hospital stay. It can block out any unpleasant noises from being in a hospital, help you get to sleep, keep you focused and give you something to do. I have a hospital playlist full of upbeat, happy music.

– Crosswords, colouring books, sudoku , puzzles etc- something that requires a bit of thinking but is easy to switch to and from. These can be a good conversation starter if you’re on a ward with the people next to you.

– I also take a notebook and a pen too. I can write how I’m feeling, questions for doctors I don’t want to forget, write letters to people and play paper games (how many countries can you think beginning with ‘A’ or how many words can you make out of the name of the new drug you’ve been put on).

Miscellaneous
– Phone charger- nothing worse than a flat battery to feel like you are now completely cut off from the world.

– Cash. Not too much as there is not always a safe place to keep it but it’s a good idea to have a little bit so you can get home when your discharged, buy something if there is a shop on a trolley that comes round wards or if you start to feel better and are allowed to go sit in a hospital cafe for a while.

– Snacks. Hospital food does not always have the best of reputations and it may be served at times your not used to so I like to keep small snacks with me. As a POTsie I need to keep my salt levels up so this helps when hospitals don’t always cater for this. Always check you are allowed snacks incase you’re having your food intake monitored or have to fast for a while.

– Diluting juice. I have a mini squeezy bottle of diluting juice to make water taste better. Helps me stay hydrated and takes up hardly any space in my bag.

– Medical information. I have a brown envelope in my hospital bag that has a list of all my allergies, doctors, past medical history, diagnoses, medication and symptoms. I try to keep the last letter from my consultants there too. It makes it easier for me as I don’t need to recall information and helps the hospital out too.

What do you have in your hospital bag? Is there anything you think I’ve missed out?

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.