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!

Advertisements

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

IMG_2132
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

img_3138
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
img_2769-1

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.

social media.jpg

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.
to do

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
bleak-house.jpg

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

pat.jpg

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
to kill a .jpg

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
fall down .jpg

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.

Highs, lows and quite a lot of waiting…

I haven’t really known where to begin this blog post and so I’ve put off writing for a while. The last few weeks have had some very good moments and some very tough ones and so it has been a bit of a rollercoaster. In fact thinking about it I can’t quite believe how much has been squeezed into the last few weeks.

To begin with the good though. Since finishing my dissertation I’ve been able to get out and about more. This has helped enormously as it’s not until your stuck in that you realise how much fresh air does! With some help from my physio and lots of practice I’ve got better at self propelling my wheelchair and can now go round the whole of a supermarket without help and just get very tired towards the end.

Being able to get out more has meant that I’ve been able to go up and down the road leading to my house in the evening when my Mum gets home from work. I’m able to do this about twice a week in my wheelchair. Consequently, I’ve been able to deer spot, cow spot and also spend more time with the dogs.

I’ve been out and about in town a little bit more and we are getting good at finding flat and accessible walks. Not all have quite been on a beaten track though and Rollo and I have been off roading which resulted in having to be rescued from a gigantic very deep and very muddy puddle!

I had a relative come to stay and it was really good getting to have someone else to chat to, get out and about and it was a lovely few days that went incredibly quickly. I felt like I was on holiday and it was the perfect way to end several months of studying. The stay ended with chips on the beach, it doesn’t get much better than that!

Slightly less good news in the last few weeks have been, unsurprisingly, medical related. The funding application that my GPs put together for me to have my week of assessments in London got approved locally and at regional level but has been rejected at national level. This is very upsetting news and has also meant I am very stuck at the moment. Cardiology and rheumatology have refused to see me in Glasgow until I have my tests done by London because they think that my case is too specialised and not straightforward enough so need more advice. Not being able to be seen by London I’m not being seen by anyone above primary doctor level just now. My GPs have submitted an appeal so it’s now a case of waiting for that and seeing what happens. Obviously this is far from the news I wanted and I really don’t know what will happen next.

The last few weeks I’ve also continued to deteriorate and need more help with day to day living. I had another OT assessment to review the changes that have taken place. I’m now no longer considered safe enough for any meal preparation, to shower without assistance and need more help with tasks such as getting dressed. She is not happy with the number of falls I’ve had either and so I now have grab rails everywhere round the house to hold onto if I think I might fall. To compensate for this change of events I’ve added a bit more interesting decoration to the house too… in the theme of course of Christmas…

I’ve also had a lot more pain and with some investigation it’s been discovered this is in part because my joints aren’t holding in place like they should and I can’t do this myself. As a result I’m waiting for an assessment to see if I need to wear some form of brace. Meanwhile I have some cushions positioned to keep my feet in place when I’m sitting to try and ease the pain a bit. I’ve also been encouraged to increase the amount of oramorph I take but I hate doing this.

As I’m needing more support I’m also now awaiting an assessment to get home care. Unfortunately, as hit the press this week, there is a massive deficit in home care in my local area and currently thousands of hours that people need help for have gone unmet so far this year. I’ve been told I might have a very long wait just to be assessed. This is causing many problems as my Mum has been told by my doctors and the OT that she should consider if she can work with the help that I need. Luckily as she works on the community as a nurse her hours are flexible-ish. However when she was called away as an emergency for a non-work related matter this week for several days she wasn’t able to go. We tried to get me emergency home care but nothing was available and the local nurses couldn’t provide the support that I might need either. I’m also not eligible for respite care locally as I’m under 60. I feel I can’t be the only young disabled person in the area but it feels like it just now. It’s horrible being stuck in this situation as I want to be able to do things for myself and don’t really want to have to accept help but currently have no choice. Unfortunately even in accepting help this causes huge problems for other people. Safe to say I feel very stuck. However hopefully time will improve things and I will get to the top of the lists for assessments at some point!

A silver lining in this though is once I have home care agreed upon, while on one hand it does confirm reliance on another person on the other hand it is one step closer to getting to live by myself again as it starts to look at support I might have in place.

To finish though with a few more positives. As I’ve been trying to stay away from the land of boredom I have set myself a number of goals. I’m going to try and finish reading the BBCs top 200 books, read a book from every country and I’m trying to get back into learning Gaelic. I also really want to find some volunteering I can do from home for a couple of hours a week. So if everyone knows of anything please let me know.

I have now scheduled to blog more regularly and will aim for more positive posts too! (For those who follow my blog via social media I don’t tend to put a link up except about once a month which is why there may be gaps in reading).

General September Update

As I type this there is torrential rain outside and I feel quite glad that I am tucked up in bed buried beneath multiple duvets and blankets with a cup of very hot tea beside me. It feels like Autumn has well and truly arrived. I am currently joined by two dogs who are showing no interest in the outside world today, they are fair weather creatures!

While I did post a blog at the end of last week to mention that my dissertation had been completed and my MA over, I thought it would be best to have a general update post as many people have been asking me what has been happening and what the latest news is, so here it all is…

I continue to be admitted to hospital extremely regularly, so much so at the two week mark of not stepping foot within the doors I have a mini celebration. As I am a regular I am getting to know the nurses and some of the consultants and they are getting to know me which makes life easier when I am there. They also know I hate being there and so they try to get me in and out again as quickly as possible. I don’t go as often as I should and my visits are normally after being strongly encouraged to attend by my G.P. or when I get to a stage where I really can’t cope. Unfortunately due to being a regular and having to have IV fluids every time I go in (this is the primary purpose in going) my veins no longer like to cooperate. I have scar tissue developing now on them, which makes it more difficult to get needles to go through. My last hospital visit took three different people and many different attempts until they found one vein that worked temporarily. This is not much fun and while I had got over my needle phobia this doesn’t help that fear lie dormant. However, there has been some talk about getting a port (a thing that is inserted in an operation to give permanent vein access) and this scares me more, it also throws up the added risks of infections and things. So right now I am happy to make do with temperamental veins! When I am in hospital it is normally due to me becoming hypovolemic (too little blood volume) and so they just top me up and I am free to go until next time.

I also mentioned in previous posts that I have been having problems with my eye sight disappearing and becoming blurry during flair ups. This has increased and often several times a week now I have problems with my sight. As this, like the hospital visits, have become more frequent it is a little bit less scary now. It is amazing what you can get used to! I had an optician visit just to see if there was anything obvious causing this. Fortunately there is nothing structurally wrong with my eyes and so the doctor and optician think this suggests that there is a neurological cause, probably caused by a mixing up of messages from my brain. Having a bit more free time I have done some researching through medical journals and discovered that eye sight problems such as these are not uncommon with dysautonomia patients. While there is not much research into the area it looks like it is either caused by mini TIA’s when the blood and oxygen is struggling to reach your brain (ties in with my hypovolemia and fast pulse rate) or it is caused by the two nervous systems competing with each other causing parts of the body to shut down.

My medical journal investigations have also brought up some more interesting information about a condition called Mast Cell Activation Syndrome that often occurs with POTS and connective tissue disorders and for which I match the symptoms for incredibly well. The condition has only been recognised in the UK since 2011 so very little is known. However, my amazing GP who luckily doesn’t mind me doing me own research and appearing at my next appointment with all my findings thinks this is a potential too and so is going away to find out what she can about it. While I know it is generally not suggested to google your symptoms to find out what you come up with, I have found using my university library access to access journals has been quite helpful. Everything I’m being diagnosed with has only recently been discovered so papers are limited and often don’t have very many participants in the studies however sometimes it is reassuring to know you are not alone!

I continue to have Physio therapy every three weeks. This consists of being given exercises which I do multiple times a day at home. This has been going very well and I have now managed to build enough arm strength that I am able to self propel my wheelchair for slightly longer distances. The success of my leg exercises depends on the day, however what I am finding easy and difficult has given more clues to the types of conditions that I might have so even that has some positives included.

I have just started undergoing the process of applying for Personal Independence Payment or PIP as its more commonly called. This is a benefit that is given to people who have problems with mobility and everyday living tasks. You are awarded either a basic or advanced rate if you are classed as eligible. The process to apply is very long. So far I have sent off for forms and filled one lot of forms in. Next I have another lot of forms to fill in that is to be submitted with medical evidence as to my limitations and from there I am invited to an assessment in person. I’ve heard many horror stories online and in the media of people’s PIP applications so I am quite apprehensive about this, however really need to be able to find a way to get more help as I am struggling more and more. For my PIP application I have been keeping a diary of what I struggle with or need help with on a daily basis and have been quite shocked seeing it written down just how much support I now get. Obviously, I cannot stay living with my Mum forever and I’m needing more help in the day so we are going to start looking at ways I can live independently but still get the support I need.

I am still waiting for funding to be approved to return to the autonomic unit for my week of tests in London. The GP however now thinks this is just a case of waiting formalities. I am also still waiting for my cardiology and rheumatology appointments as there was a bit of a mix up over which departments should see me first however that is now being sorted.

Away from the medical side of things I am beginning to get used to life on wheels! Rollo and I have been increasing our adventures and I feel less self conscious now when I am out and about. I continue to be surprised how inaccessible places are, however have managed some off road wheeling to compensate! But I shall save that for another post…

A Battle Completed

I haven’t posted in quite a while as life, as it has a habit of doing, got in the way a bit. I haven’t been especially busy but I have had to ration all the energy I have had into my dissertation. It has been a slow and very painful process, as I have only been averaging a few hours on it a day and have forgone everything I can to reach the end goal. Consequently I have an overflowing email inbox, my room is very messy, I haven’t spoken to anyone for quite a while and have been a hermit in my bedroom staring at laptop screens for what feels like months. However, my dissertation is now completed which means I have made it to the end of my masters degree and now just have to sit and await results in about two months time. I’ve no idea what to expect to walk away with, as my goals have had to change from wanting to get a distinction to simply a pass being enough. However, at this point what ever I achieve I shall be incredibly happy and proud that I stuck this out to the end. I think after the pain, tears, at times feeling of sheer impossibility and doubts as to why I’m studying, finishing my dissertation has become enough of an award in itself.

When I started my degree last September I was well. Although I did have some troublesome symptoms I was able to do what ever I wanted, rarely missed classes and was very active. Health rarely got in the way. Handing my dissertation in today has been a reflection not only on a year of academic work but also a year of rapidly deteriorating health. The first term of my degree went really well. I got grades I wanted, was student rep for my course and got to sit on several committees. I had problems finding time to fit everything in but I was very happy. Then, the first week back in term two, I had my first collapse at home and the first of my visits to A and E via ambulance, then really began this journey into the land of chronic illnesses. Since then I have just continued to deteriorate. I started this degree being able to go on hikes, now I can make about 50 metres and have to use a wheelchair. I used to struggle to find time to do everything I wanted to do, now I have the time but struggle to find the energy. It is strange to look at what has changed and how. Before my life consisted of reading multiple journal articles a day, now it is filled with taking vital signs multiple times a day. I visit the doctors more than I see the inside of a library and have seen the inside of an ambulance this last term more than I have seen the inside of the bus to university.

While it sounds a bit depressing, right now I don’t feel too down about it. I’m just incredibly pleased that when I was told to give up my degree back at the start of this year that I said no and persevered. That when I was told I wouldn’t be able to complete it and that I should at least take a leave of absence that I have stuck on. Back then we thought I would simply get better, it would be a case of working out what was wrong, giving me a tablet and all would be well. Now it is apparent that that is no longer the case. It is looking likely that I have something genetic and potentially the end scenario is not good. If that is the case, I am even more grateful now that I got to the end and have something else to tick off that I wanted to achieve.

Since starting studying for my dissertation I have had fourteen unexpected hospital admissions, been seen by seven different hospital departments, been to six different hospitals, however despite this I have managed to get my dissertation finished.

I know if it hadn’t been for the obstacles in the way of studying, I would not have the sense of success I have now in getting to the end. I can’t quite believe I’ve done it and that when I wake up tomorrow I don’t have worry about word counts and deadlines! Instead I can aim for the next challenges that life has thrown my way; getting full diagnoses and looking at my options for independent living.