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.

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Assessments, assessments and some more assessments

After months of waiting for things to happen I’ve suddenly had several weeks filled with assessments for all sorts of things; carers assessments, PIP assessments, option assessments and also assessment results back from university. It’s felt pretty busy all of a sudden and there has been a lot of reviewing everything. I had been really hoping that all my assessments for things would hurry up so I could start getting help that I needed put in place but what I didn’t expect was for them to all be quite depressing. The assessments, understandably, are designed to work out what is going wrong, what you need help with and what you can’t do. However, I’ve found that quite tough. I try not to focus on the negative side of things as much as possible and suddenly I’ve had several weeks of meetings that have all focused on problems and difficulties.  I also realised I hadn’t quite appreciated the extent my health has deteriorated and how much I’ve lost the ability to do things. Probably because everything has happened gradually over the course of this year things have just slowly changed or adjusted and I’ve needed more help with daily tasks as time has gone on. It was a bit of a shock therefore to suddenly have to examine the differences between me being well and now and list everything that has happened. It also became more apparent that my symptoms have also been present for quite a long time and I just ignored them as they were milder for many years. This has been a bit of an odd realisation as suddenly more and more things are linking together that I had previously dismissed and just carried on with.  All of this has been quite hard to bounce back from as well as physically exhausting with having a lot of meetings all clumped together. Luckily all of them were carried out at home so I didn’t have to travel anywhere. I’m now waiting to hear back from them all as to what the next steps are.

My carers assessment was probably one of the toughest assessments to get through as it was very long, fairly repetitive and quite difficult to know what sort of information you were expected to give. Carried out by a social worker they looked at what help I need with day to day living, taking part in social activities and getting out and about. They also look at whats already been put in place, what the goals you want to achieve are and barriers in the way of reaching them and also how you feel on a daily basis both mentally and physically. I didn’t quite expect there to be so many parts to this assessment and ended up having to have it carried out over two separate meetings as I wasn’t well enough to sit it all out in one go. I’m not too sure how it went overall as the assessment didn’t feel like it was very well geared question wise to me or to someone who has health that is still deteriorating or in fact to younger people. My longterm goal is I want to live independently, I do want to work and I want to carry on studying again at some point but I have to wait for more health answers first from hospitals and that got quite confusing to try and explain. It felt a bit like the assessment tried to put you in a restrictive box and assumed because you were ill that you had no plans other than to sit around doing nothing and have it arranged that people would be paid to come to your home to talk to you about the weather or something for an hour a week (OK I’m quite cynical and possibly over exaggerated a bit but it did feel very much like that!) The assessor also seemed fairly convinced I needed to have a television in my room (I don’t currently and don’t have any plans to) and I don’t think she understood that. The assessment then finished with several questions that felt a bit patronising such as ‘name x number of things that are going well with your health right now?’ This after an hour of all that’s going badly seemed a little bit odd and seemed a bit like a token question on the assessment sheet to try and end on a positive note but was kind of hard to answer. I have about a months wait to see a copy of the report from this one.

In-between my two carers assessments I had my PIP face to face assessment. PIP is a benefit paid to people who struggle with daily living tasks and mobility in the UK to help you be able to get support with these types of tasks. You apply by sending off forms and evidence and then you have a face to face interview with an assessor who checks your evidence, asks you a lot of questions, gets you to carry out exercises and writes a report on the interview. In the press there is a lot of horror stories about PIP assessments and so I was incredibly nervous about this. Luckily, I was surprised at how well it seemed to go. Originally I had been told my assessment wouldn’t be until February but it actually ended up being less than a month after I sent my forms in. I heard I was having an assessment four days prior to the day and also found out I was being assessed at home. Assessments are normally only carried out at home if you are terminally ill, or have good supporting evidence as why you can’t travel to an assessment centre. I had expected to have to travel for it and was really nervous about that as I really cannot sit up for very long, so I was incredibly surprised and relieved to find out they would come and visit me. The day of the assessment I was in the middle of a flair up and not long out of hospital so she was quite happy that I was stuck in bed and just carried out the interview in my room. The assessment lasted about an hour and a half and was mostly a lot of questions covering all sorts of things. I then had to answer some maths questions and spell words backwards which was easy and then I was supposed to have a physical assessment where they ask you to carry out several activities and see what happens. However the assessor took my pulse and oxygen levels before any of this and as these were not good readings  and apparently I was a fairly grey colour she wasn’t happy for me to do anything as she was worried she would end up calling an ambulance so that ended the assessment. While I am not sure what the report will say this assessment was no way near as scary as I thought it was going to be and the assessor told me to appeal the decision if I’m told I’m not eligible. While there were some questions that did seem a bit designed to trick you out if you weren’t genuine, this was one of the best face to face assessments I’ve had throughout the process of being ill. I’ll get the assessors report in a couple of weeks and the decision in about a month.

This month I’ve also heard back about my masters degree assessments. I’m absolutely thrilled to have passed my course and also did better than I had expected I would do when I handed my final dissertation in. It’s made it really worth sticking it all out when it got really tough towards the end and has been excellent news to get in amongst all the other assessments!

Now just to wait for next week- the week of London hospital tests!

Dysautonomia Awareness Month

Once again I’m a little bit behind with blogging but my excuse is that I have had a month of feeling especially rubbish with symptoms and consequently had quite a lot of hospital visits. I’m considering giving the hospital as my address now. Luckily admissions have become  routine; they know what to do, I know what will happen and I know most of the staff now fairly well. My last admission my nurses ended up changing so that I have consistency with it being the same few people which I was very grateful for as I didn’t have to explain anything and they knew the signs to look for too. Consequently it was a fairly quick visit as they just attached me to a drip and started giving me fluids very quickly. They also got a vein first attempt, the first time this has happened for months!  As a result though this post that I had hoped to write near the beginning of October is just being written now. However as it is still October which is Dysautonomia Awareness Month I decided it would still be relevant.

Dysautonomia Awareness Month

I’ve always felt a bit unsure of awareness months for various things if I’m completely honest. Maybe its because there are a lot of them and sometimes it is confusing if it is awareness about the issue as a whole, or a specific element of it and also what as an individual you can do about it. However, I have found that with something like Dysautonomia Awareness Month it is quite useful. As a result of the month more information is being released about dysautonomia and made public and so more people are told what dysautonomia is and signs to look out for. As it is a relatively unknown group of conditions dysautonomia is rarely diagnosed and often people know little about it including medical professionals. Since being diagnosed I have only come across three medical professionals who knew what it was (and I have seen a lot!), one of these worked specifically with people with these conditions so I’m not sure if they count. Out of the other two medical professionals I was the first person one of them had met with the condition and for the other only the second in their career and they worked at a large teaching hospital. My own diagnosis really only came about by chance. Now consultants think I may have started to show symptoms of it, albeit mildly, since I was nine years old. It was not until several years of being abroad resulting in me being directed to tropical diseases, in what ultimately proved to be a red herring, leading to a consultant who remembered reading a journal article about dysautonomia who put my symptoms and the condition together. If it wasn’t for that one person, I’m not entirely sure where I would be now or if I would be any nearer a diagnosis. Awareness therefore can make a massive difference.

So what is Dysautonomia?

Dysautonomia basically means disruption of the autonomic nervous system. There are various types of it; some only affect specific population groups such as specific ages or ethnic groups, others are incredibly rare, they also range in seriousness. Postural Orthostatic Tachycardia Syndrome or POTS (which I have a diagnosis of) is one of the most common types. POTS while only being recognised as a syndrome in 1993, has however been around throughout history. Previously it has been known as Soldier’s Heart, which was documented as a condition that caused soldiers to faint on exertion; Irritable Heart; Effort Syndrome and De Costa Syndrome. There is also documentation of an abnormal type of polio that consultants today now think might have been POTS. More recently many people with POTS and other types of dysautonomia have been diagnosed with ME or Chronic Fatigue Syndrome and it is estimated that up to ten percent of people with a diagnosis of ME/CFS might actually have a form of dysautonomia that has never been diagnosed.

Throughout history and even today it is extremely common that people with dysautonomia are wrongly given a psychiatric label, especially as there can be so many symptoms and yet it can be difficult to see, making it an invisible illness. Instead it is often believed to be in the patient’s head and there are many associations made with the historical idea of the hysterical female (POTS sufferers are mainly female and develop symptoms as a teenager/early twenties). From my own experience I started to have an increase in symptoms when I first started university as an undergrad, I was directed by my university GP for Cognitive Behaviour Therapy. I was then rejected from the CBT course as the person running it did not think I displayed stress or anxiety and didn’t understand why I had been referred. For many people this becomes a never ending loop. POTS is not connected to mental health however sometimes symptoms may seem similar to those experienced by people who are anxious or stressed by a doctor. The average person takes six years and eleven months to get a dysautonomia diagnosis from when their symptoms first start becoming problematic.

What is especially frustrating about this is that dysautonomia, especially in the case of POTS, can be recognised from very simple tests. Taking your pulse from lying down and then monitoring it while standing up for ten minutes can provide an indication of whether there might be something more serious going on. If your pulse goes over 30 beats per minute higher than your resting pulse within ten minutes of standing (over 40 beats per minute if your under 19) then this is a sign something isn’t right and your body is struggling to correct itself in relation to gravity.

What causes POTS?

POTS symptoms are caused when the autonomic nervous system doesn’t work properly. On standing gravity pushes blood downwards into the legs. Most people are able to continue to get their blood flowing back to normal and their bodies constrict to changes in posture quickly enough that they don’t notice. For people with POTS this doesn’t happen and you end up with blood pooling in your feet and legs, your body consequently has to work much harder to pump enough blood and oxygen around, which causes your heart to beat faster. People with POTS may faint on standing up as a result. Often we also don’t have enough blood volume either. It is basically torture by gravity.

POTS though is just not a case of your heart rate speeding up on standing, there are many other symptoms alongside including gastrointestinal issues, difficulty thinking and concentrating, exhaustion, headaches, muscle and joint pain, tremors, lightheadedness, numbness in limbs, dizziness and many more.

Why does it happen?

This is different for everyone. Some people develop POTS after a virus and they just never seem to get better. For other people it develops during pregnancy or after surgery. For many people though there may be an underlying condition that triggers dysautonomia such as a connective tissue disorder, lymes disease, lupus or a number of other conditions some of which are extremely rare.

Long term Prognosis?

This is fairly unclear as research into POTS is quite new. What research has shown is that people living with POTS have the same quality of life as those with severe COPD or on dialysis. Maybe unsurprising from this is that the biggest killer of people with POTS is suicide. Getting ill can also prove more serious with POTS patients being at more risk of developing things such as pneumonia. Getting a cold can quickly turn into a hospital admission.

Some researchers predict people who have POTS caused by a virus are the most likely to recover and respond well to treatment. There is no cure for POTS but treatment can help to manage symptoms. If there is an underlying cause then treating that as well as possible should help to reduce POTS symptoms.

Originally it was thought that the majority of people would improve over time although a new study that was carried out over a longer period with a bigger group of people has partly disproved this instead showing that the majority did not get better although symptoms may improve.

What POTS means as an individual?

For me POTS has definitely changed my life. I am unable to tolerate sitting up or standing for long periods of time. My blood pressure is extremely low, on standing my pulse can go very high and my oxygen levels drop and my legs go purple while my hands stay their usual colour or I go very grey.

POTS has meant I now use a wheelchair to get around when I am out the house. I also have to have a LOT of salt in my diet to increase my blood pressure and have to drink a minimum of three litres a day to try and increase my blood volume.

If you’ve managed to make it to the end of this post and want to learn more about POTS, for Dysautonomia Awareness Month last year, this video was made which provides a pretty good outline of the condition. POTS video

London Calling

Last week I wrote that my week of tests had now been funded. Really strangely while my week of testing has been funded my appointment to get my results and plan next steps hasn’t been! So I’m facing having to go through the whole funding process again so I can find out my results and what I can do to improve. This seems really ridiculous and sums up bureaucracy at its finest. However I’m trying not to think about that too much for now and will worry about it when it gets to the stage of meetings.

However more positively I have had my inpatient stay confirmed now and I will be admitted in early November. I am absolutely terrified and also excited, which is a strange mix. I know the week is going to make me feel terrible as the whole purpose behind it is to trigger symptoms so that they can be recorded and measured. I’ve kind of signed up to feel especially rubbish for a while. However I’m really excited at the prospect of finally getting answers and knowing what is going on. Hopefully with that information I will be able to learn more about what I’m dealing with and there maybe be more treatment to make life manageable.

With my appointment letter came a further letter with a list of tests and instructions on how to prepare for them as well as length of time each one will take. Some last 24 hours such as a wearing a blood pressure cuff which will take readings every twenty minutes another one involves cycling and says it takes an hour and a half (now I know cycling for an hour and a half will be impossible for me!). Other tests require me to keep my hands warm before, the majority involve fasting for four hours prior and slightly horribly the majority also need cannulas- I’m hoping they’ll have more luck there then they do here at finding my veins! I’m being tested for many autonomic related things from breathing to heart rate to exercise tolerance to why I can’t manage to eat meals without feeling ill. Some of my blood samples will also be sent off round the UK to different specialised labs for testing (my blood is becoming better travelled than me!) It’s very odd to be going somewhere were they understand my symptoms and have finally found potential connections between them all.

I’ve booked sleeper train tickets which I’m pretty excited about. I’m hoping this will make the journey seem a lot better than the last one and it will be something else to tick off that I have done. I can’t really imagine what it will be like so shall have to wait to see.

I just can’t quite believe after these months of waiting I just have a few weeks to go until it is here!

Helpful Discoveries I’ve found since becoming ill

I am aware that quite a few people who follow my blog also have chronic illnesses. I wanted to make a post therefore specifically for people who are in a similar situation to me of things I have found helpful so far. This is particularly the case as so many of these things I’ve only heard of by word of mouth or luck and would have been easy to miss. So here the top seven things I have discovered…

Listening Books
Listening Books is a UK based postal or streaming audiobook library. At £25 a year you can listen to as many books as you can get through. The library is vast with everything from children’s stories, classical fiction, new releases, plays, BBC recordings to a variety of non-fiction. I started a postal subscription about a month ago and it has been so worth it. They have sent me four books to begin with from a list I made on their website of books I was interested in. I can now listen to books when I’m too tired to read off the page. It’s also really useful for hospital stays to be able to tune into something and switch off to what is going on around you.

To be eligible for Listening Books you need to have a form of disability that makes reading more challenging whether it be something that makes you at times too fatigued to read or something such as dyslexia. The charity has been going for decades but I only stumbled across it recently. The staff who run it seem incredibly helpful too and can even make you a reading list if you don’t know what you want to listen to based on your favourite genres.

https://www.listening-books.org.uk

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Listening Shep

Future Learn
Future Learn is a website that offers free modules on a range of subjects run by universities. Before you begin, each module tells you how many weeks it will run for and how many hours you need to study a week. Unless you want a printed certificate at the end most courses are free to join, you study it in your own time and when works best for you and you can also drop out if you need to at anytime.

I was really missing studying and this website was recommended to me. I’ve found it really beneficial to have tasks to work towards each week that are intellectually interesting but not exhausting. Courses also have discussion boards so it has been good to interact with people on a variety of subjects. I’m currently doing a history course on the Jacobites and a course on hiring your own personal assistant if you are disabled (something I’m personally going to have to look at). However there are also language, coding, creative writing, science, politics and literature courses.

https://www.futurelearn.com

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Studying Again

 

Euan’s Guide
I stumbled across this website by complete accident but have found it incredibly useful. Euan’s Guide is a website of reviews of tourist attractions, holiday homes, cafes and restaurants but with a difference, it rates their accessibility. Until you are in a wheelchair it is hard to realise just how inaccessible most places are whether it be steps, to doors not being wide enough to people working in the place equating being in a wheelchair to you no longer being an individual person. This guide however reviews all of this and most importantly it is written by disabled people for disabled people. When I was in London with Rollo we found this website incredibly helpful to find places to go as you just need to type in your location and type of mobility aid you use. You can also sign up as a reviewer and rate places near you to help other people too.

https://www.euansguide.com
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Social media
This one may seem fairly obvious as when you can’t get out the internet begins to prove an invaluable way to keep in touch with people and discover that you are not alone in your circumstances. While I am not a fan of most Facebook support groups (I quickly got frustrated with it all being fairly pessimistic and people trying to show they were sicker than everyone else), I have found social media can be a positive tool if used in the right way. The most helpful things for me has been following blogs of people who are chronically ill and disabled who still have a positive outlook on the world and are still determined to achieve things even if how they do it is a little different. These blogs really pick me up when I’m feeling a bit more miserable. Also helpful have been hashtags such as #chronicallyacademic, which is of academics who are ill. This has helped give me tips of how I might manage to get back into studying again in the future.

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Bullet journaling
I’ve always had a bit of a notebook and stationary addiction and while I hate shopping can quite happily spend hours in Paperchase. As I suffer quite badly from brain fog on some days and also need to track symptoms and how often I am achieving tasks I’ve found writing it all in notebooks useful. This has led me into the world and hobby that is bullet journaling. Bullet journaling is in a basic form a notebook that is a mixture of a diary, planner, memory keeper, goal tracker and list collection. While it is up to you how you compile it and how basic you make it there are whole Facebook groups of people sharing their pages and ideas of what to put in it. I keep mine fairly simple with a calendar, weekly charts, lists of goals as well as book, film, tv lists and daily habit trackers. You can find more information about bullet journaling here:

http://bulletjournal.com

 

I have done lists
In slight contrast to my bullet journal of planning ahead I also carry out the opposite,  ‘I have done’ lists. Sometimes I can find it a bit demoralising to not feel I’ve achieved much in a day and so I started making these instead of To Do Lists. Everything I achieve including simple things go on the list and it helps me realise I often achieve more in a day then I had given myself credit for.
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Packs for bad Flair up days
While I am symptomatic everyday I have days where I can’t really get out of bed at all. On these days I don’t always know what to do and can feel quite low as symptoms seem overwhelming. As a result of this and to make these days better I have made a couple of different packs specifically for these days. Using shoeboxes they contain things I can do from my bed, that require minimal effort and will cheer me up. For example they might have a favourite DVD or book, things to colour, fluffy socks, favourite food or type of tea and puzzle books. On a not quite so good day therefore all I need to do is select a box and I’m all set.

 

 

Some good news

This is a very brief update but I’ve had some very good news so wanted to write a post to let people know. I found out yesterday that the appeal for funding to be seen by the autonomic unit for my week of tests was successful. I am incredibly relieved.

I ended up in hospital this weekend for more IV fluids as I’ve had a terrible orthostatic headache the last few days and haven’t been able to sit or stand up without becoming very unwell and the doctor wanted to see if fluids would help. They did slightly and so I’m now back home to my own bed but to return if it increases again. Luckily my own GP was on call last night and so gave me the good news which of course improved the whole hospital experience.

I heard from the Autonomic Unit this morning as well and as soon as the paperwork is through they will give me my inpatient dates. They think it will likely be in November but potentially they might be able to give me an October admission. As my last trip to London I wasn’t so ill and struggled with the journey down anyway we are going to see if we can get the sleeper train so I can lie down on the way there and back. I’ve never been on a sleeper train before so this will be a new experience for me.

In other good news this week my physio therapist has given me some supports for my knees and ankles to keep my joints in place. It’s helping and my pain levels are a bit more manageable.

After what has been a tough last few weeks I’m feeling a lot more cheerful again and so glad that things are going a bit more to plan once more!

September Book Reviews

It has been a quiet month of reading however here are my top four books from this September…

Bleak house by Charles Dickens
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I’m one of those readers who has several books on the go at all times. I’ve been reading Bleak House since May of this year on and off and I finally reached the end of it this week. It’s a very long book with extremely detailed descriptions throughout (as Dickens seems to be a fan of) but well worth a read and sticking to until the end.

Bleak House follows multiple narratives of a range of individuals including a woman called Esther who goes to live at Bleak House and who is an extreme optimist, Lady Dedlock who lives a life of luxury but guards a hidden secret and Joe, a street child who must fend for himself and is constantly being moved on by officials.

While I can’t give away too much of the plot as it all interweaves with each other and it would be easily possible in even saying little in saying too much. However Dickens through his portrayal of Victorian England still brings up many questions and themes that are relevant today: Do we blame the individual for poverty? Do we forget to focus on those who might need help closer to home? Must you always carry out duty no matter what the cost? What really is honourable or not? As well as themes of family or lack of it and what really counts as being a relative. What does family really mean?

I definitely think this book is worth a read if you have quite a lot of spare time. It is one of those books that is difficult to just read a page of in one go and instead needs to be read in larger chunks too not get lost.

Pat of Silver Bush by L.M.Montgomery

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As a child, L. M. Montgomery was my favourite author and I still frequently revisit the Anne of Green Gables and Emily of New Moon series. I was absolutely thrilled to discover that more of her books have recently been reprinted (they’ve been out of print for a number of years) and so ordered a copy of Pat of Silver Bush.

For those not familiar with L.M.Montgomery her books tend to centre around children/young adults growing up on Prince Edward Island at around the turn of the century until around the 1920s. She writes of old fashioned farm houses, and mini adventures, catastrophes and incidents that befall her heroines. Her books are always gentle stories though her characters are normally strong females with plenty of imagination and inward reflections.

Pat of Silver Bush follows the story of a young girl into early adulthood as she grows up with her extended family on Prince Edward Island. Pat however hates change and doesn’t understand why things can’t be the same. The book follows her life as she is forced to encounter change some of it very unexpectedly.

Pat I have to admit is not one of my favourite Montgomery heroines and the story did seem slightly rushed at times. Nevertheless I really enjoyed reading this and it has renewed my ambition to someday make it to Prince Edward Island.

This is a good book if you want a gentle read and bit of an escapism into a past world. The story follows seasons as do rural communities and has a sense of a different pace of life to the ones we follow today. If you’re new to L.M.Montgomery books I would though recommend starting with one of the more popular Anne of Emily series.

To Kill a Mockingbird by Harper Lee
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I read this book about once a year and realised earlier this month that my annual reading of it was long overdue. One of my favourite books I don’t think there are enough good things to say about it. If anyone was to read one book from this list, this should be the one.

Jem and Scout Finch are growing up in a small town in Alabama during the Great Depression. They are brought up by their father Atticus who is a lawyer and quite possibly one of my favourite characters in literature. Atticus is called upon to represent a man who has been accused of raping a girl in the town. However the accused is black and in Alabama that makes him guilty even if the evidence suggests he is innocent. The book told through Scout Finch’s eyes tells this story as well as following her growing up and her own interpretations of her father, who while having integrity and strong morals, can at times not be understood by his daughter for this.

There are so many themes rising from this book from race, poverty and gender expectations to what age do prejudices develop, peer pressure and group mentality to the importance of integrity in all situations.

What makes the book work as well as it does though is it’s narrative told by Scout who never fully realises the implications of what is happening around her. Sometimes more is said by what is not said then what is explicitly written on the page.

Prepare if you start to read this book that you will not be able to put it down until you turn the final page and then prepare that you just might want to start it all over again. Even if you’ve read this before I recommend reading it again. I pick up something different from it every time and as I’ve got older my interpretation and understanding of the plot has changed too.

Fall down 7 Times stand up 8 by Naoki Higashida
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I read this book in part for my dissertation and partly because I wanted to anyway. This is a non- fiction collection of writings by a severely autistic man in Japan about his life. While Higashida is non-verbal and requires assistance in day to day living he is extremely expressive through written communication and is able to describe in detail how he experiences the world. Talking about everything from how he finds others perceive him, to the care he needs and the frustration at not being able to express himself verbally this is a really interesting account.

It once more raises the questions of do low and high functioning labels of autism put people in a box that results in their personhood, potential achievements and individuality being ignored and on the other hand certain difficulties being overlooked.

A must read for anyone who works with autistic people or those with learning difficulties or to be honest for anyone. It shows that everyone is an individual and deserves to be treated as such and that is not ok to overlook someone or make assumptions about them.