A Very MErry Christmas

For the majority of the population the festive season is a time that brings with it unwavering joy and excitement. The prospect of some time off from both school and work to spend with family. The good food, festive films and gifts. Family traditions that have stood the test of time like the post-Christmas dinner walk, that no one wants to miss out on. 

But for those of us with chronic conditions like M.E. the festive season comes with a few more challenges. Often making the time of year particularly anxiety fuelled. Christmas ends up being all consuming, permeating into all energy types. The cognitive tasks: coming up with gift ideas, the logistics of who is visiting when. The physical tasks: braving the supermarket, wrapping the gifts, eating the meal. The emotional tasks: the conversations, the socialising, the managing of other people’s expectations of you. The tasks listed are just a snippet of what could be a never ending list. 

If you feel overwhelmed just looking at those examples, just imagine doing all of them and more on a battery that only charges to 20%, takes about 3 hours to run out and 3-5 days to recharge back to 20%. 

That’s the reality of the festive season with M.E. 

All the things often wouldn’t get done at all without the help of supportive friends and family coming to the rescue. Picking up those last few gifts on your behalf and wrapping them to save your precious energy supply. 

Each year I always find myself in a situation where I overthink my every move in the weeks leading up to Christmas. Considering carefully the energy expenditure of each activity I do, spacing tasks throughout the week with bigger rest periods than normal. Trying desperately to walk the tightrope between managing okay and triggering a flare that could land me bed bound on the day we are meant to celebrate. 

Well this year despite best efforts I am feeling far from fabulous. Pushing through to the end of the university term has finally caught up with me and I’m paying for it, big time. Despite Covid-19 regulations minimising some of the in person plans we had as a family, something I’m sure we have all learnt this year is that Zoom fatigue is a very big problem!  So the day is still going to be alot for my body, that is very much finding being a semi-functional human hard right now.

In an attempt to stop myself making comparisons between this year and past years because of both Covid-19 and my health, I’ve compiled a little list of reminders to help me make it through the festive season amongst the uncertainty. So I thought I would share them just in case your body, brain or both are being particularly bothersome at this time of year. 

  1. It is okay to rest- The day doesn’t have to be 100 miles an hour, taking yourself off for a power nap or lie down is more than okay 
  2. You are allowed to prioritise what’s best for you, even if other people don’t seem to understand- I think sometimes it’s easy for the people around us to forget that chronic illnesses don’t just disappear because it’s Christmas (if only). 
  3. You aren’t the only one going through this- Lots of people find Christmas difficult for a multitude of reasons, even those without chronic illnesses .These people may be able to socialise or trudge round the shops, but it doesn’t mean they are having the best of times. All is not how it may seem from a social media post. 
  4. You are not obliged to tell extended family anything you don’t want to discuss- This includes discussions around your health, you don’t have to tell them no matter how insistent they are if you aren’t comfortable to do so. 
  5. You know your own body better than anyone, there is absolutely no need to overdo it for the sake of meeting other people’s unrealistic expectations of you. 
  6. You are doing the best you can. 

The impact of M.E. at Christmas doesn’t stop when the day ends. There will always be the payback days no matter how careful you were not to over exert yourself. Don’t beat yourself up about this, you can’t help it. Take the next few days to rest and engage in gentle self care, being kind to yourself and giving yourself the same amount of grace you would give a friend going through the same.  

Festive fatigue and M.E at Christmas is something I don’t think is spoken about enough. If you are reading this and don’t have experience of M.E I hope this has given you an insight into how much effort 1 day can be. If you too have M.E. I hope this has resonated with you in some way or another. 

Wishing you all a Happy Holidays and a Very Merry Christmas to all who celebrate!

Amber  

My DSA Experience

Long time no blog, it’s been a while since I last uploaded on here. In all honesty I’ve struggled to find the time to write since starting university in September. So I’ve taken advantage of the little let up in work being set during reading week to get a couple of posts written because I’ve missed posting here.

Today I want to talk about Disabled Students’ Allowance (DSA). 

DSA is a government grant available in the UK for disabled students. It is available for people with a wide range of conditions including: autism, mental health conditions, physical or chronic illnesses and specific learning disabilities (SpLDs) such as dyslexia. Even if you do not personally identify as disabled you may still be eligible so it is definitely worth a look. Especially as it has been found that in 2017 nearly half the people eligible for DSA did not make a claim.

DSA funding can be used to fund a range of specialist equipment, software, mentoring and can cover extra academia related costs incurred as a result of disability. It aims to place you on a more level playing field to your able bodied peers. It is not a means tested grant and you are not required to return any of the equipment you are granted at the end of your degree. It is yours to keep. There are no costs; except if you live in England and are granted a laptop, you are required to pay £200 towards it (as all students, not just disabled ones require a laptop). 

I applied through Student Finance England (SFE) so this is the application process I am going to be describing, it may differ slightly if you apply through an alternative funding body. When I was completing my main application to SFE I was asked if I wanted to make a DSA application, I then had to fill out a short form. The main step is compiling evidence of your condition(s) and how they affect you in education. This may take the form of clinic letters, diagnostic reports or your ECHP if you have one. Something to note here is that your evidence needs to be from after your 16th birthday, so if you were diagnosed previous to that you may have to pay for new evidence. 

After submitting my evidence, I was granted DSA for my Myalgic Encephalomyelitis (M.E.) and was then invited to book a Needs Assessment. The thought of an assessment about my condition filled me with anxiety after previous experiences applying for PIP, however I was quickly reassured by people who had experienced a needs assessment that it was nothing like a PIP assessment- they were right. 

My assessment was conducted via Skype due to the Covid-19 pandemic but they are usually in person so you can test out any software and equipment. My assessment took about an hour and a half, but this can vary. My assessor was lovely and very understanding when I needed to take a break due to fatigue, she also didn’t bat an eyelid when I needed to lie on the floor for a minute. It was more like an informal chat. She asked about my condition, how it affects me in my studies and about any support I had in place whilst attending school or college. She then talked me through her suggestions of things that DSA could supply to help me and modelled some of the software. She was incredibly knowledgeable and  suggested things to help that I hadn’t considered before. After the assessment she then collated her recommendations into a report which advocated for as much support as possible by justifying my need for each item she had recommended. I was then sent a copy of this report to review and check I was happy with it before she submitted it to the funding body. 

It took around 2 weeks for SFE to process my report. They then sent a DSA2 letter which outlined the support I had been awarded- I received everything that my assessor had suggested, which I am told, is what happens in most cases.

I was awarded a lightweight laptop and printer. The laptop is great and really easy to use. My assessor highlighted to SFE the importance of the laptop being light weight due to muscle weakness and I’m very grateful she did as it has made such a difference. The printer is also brilliant and has saved me a lot of energy as I don’t have to venture to the library every time I want to print something. Alongside the printer I was also granted an allowance for consumables such as paper and ink- you purchase this yourself, keep the receipts and claim the money back from SFE at a later date. 

The laptop arrived with the software I had been granted already preinstalled ready to use. I was granted 4 pieces of software. The first being Read & Write (text to speech and highlighting for PDFs etc), Ayoa (mindmap software) Dragon (dictation) and Sonocent (recording). At the moment I use the first 2 most as online learning means many of my lectures and seminars are recorded already. To help me use the software I was also granted a microphone that attaches to my laptop to record from and a bluetooth headset for dictation as well as technology training with someone from the company to show me how to get the most out of each software. I was also given a high quality pair of noise cancelling headphones to help with my sensory sensitivity in communal working areas, I haven’t been able to test them out properly yet due to covid-19 restriction but they have been very helpful in keeping me focused whilst studying in halls.  

Another thing that was recommended by my needs assessor was an ergonomic equipment assessment. This involved a Zoom call with a company who provides office equipment. We talked through the things I found difficult about working at a desk and they suggested pieces of equipment they could provide to help. The report from the company was then sent to SFE to be approved. Someone then came out to my house, well garden because of the pandemic, in full PPE to take my measurements. The equipment was then delivered 3 weeks later to my halls of residence, where again in full PPE, I was talked through everything I had been awarded. 

I was granted a wide variety of equipment. Including an ergonomic desk chair, which is built specifically to my height and weight as well as providing support in targeted areas of my spine. A foot rest that tilts to help with the circulation in my legs. A laptop stand, wireless keyboard and adapted mouse. A lap desk, bed wedge and book seat- these have been particularly useful when having to study from bed. All of which is now mine to keep at no cost.

This equipment has been invaluable during the period of online learning. Don’t get me wrong being at university has taken a toll on my health- that’s a post for another day- but the equipment provided by DSA has enabled me to make the best start at university possible. So, if you think you may be eligible it is definitely worth a look. 

I hope this has been helpful in outlining the process, making it appear less daunting and giving you an insight into some of the support available.  

You can find more information at these links:

5 Things I’m Doing to Prepare for University as a Disabled Student

Starting university is a daunting prospect for everyone, but as a disabled student I can’t help feeling as though some of my main concerns and worries are quite different to those of my able bodied peers. Today I wanted to share 5 of the things I have done/am doing to ease my transition into university life as a disabled student.

  1. Introducing new tasks into my daily routine 

Moving away from home is a huge deal for anyone, but as a disabled student the move comes with additional challenges. On top of getting myself to lectures, moving into halls means I will have the responsibility of cooking for myself and cleaning my own space. Something I’ve haven’t really had to think about when living at home as my family would prefer I save my energy for other things. So in the months before starting university I have slowly been adding some of the new activities into my day and looking at ways I can reduce the exertion throughout. Some examples include using lightweight saucepans, pre chopped vegetables and sitting on a chair when cooking. 

  1. Getting into contact with other disabled students current or graduate from the university 

Hearing from other disabled students who currently study or have studied at the university is invaluable. Whether it’s finding out the most wheelchair accessible routes across campus or knowing the quieter places to study, first hand experience is the best way to find out. It may be that student support services or the disability representative of the Student’s Union are able to put you in contact with other disabled students. But if not you might have to dig a little deeper. Within the chronic illness community online many disabled students are sharing their stories and would be willing to chat to you about their university experience if you pop them a message. 

Pippa Stacey, a chronically ill writer and blogger, has collated a list of connections and contacts for disabled students, which you can find here. All the individuals listed are either current or graduate students who have offered to be a point of contact for prospective chronically ill/ disabled students. 

Whilst you might have different conditions, they have experienced life at the university so may be able to give you extra pointers or advice as to what to expect.

  1. Researching support available

My sixth form was not the most knowledgeable when it came to information about support available at university for disabled students, telling me to apply for Disabled Students Allowance (DSA) but not telling me what it actually was. That was when I started to do some research. 

It was then I purchased University and Chronic Illness: A Survival Guide written by Pippa Stacey. The book explores every aspect of university life from the perspective of a chronically ill student, giving tips and advice of what to expect, highlighting things to consider you may not have thought of before and the support you are entitled to, including the DSA process. I know that I will come back to the book many times throughout my degree, it really is an incredible resource and I would highly recommend it to any chronically ill person who is trying to navigate the world of higher education. You can find more information about the book here.

As I had disclosed my disability within my UCAS application and consented to having this information shared with the universities I had applied to, student support services contacted me via email. They outlined the support that they could offer and also made sure I was aware that I was entitled to DSA. I was assigned a member of staff to be my key point of contact for any questions or queries, I really appreciated this as it meant I didn’t have to keep explaining the same things in multiple emails to different people. Once I accepted my offer the process of getting my Academic Access Plan (AAP) began.

  1. Preparing information to share with lecturers and flatmates 

Lecturers 

At the university I am going to be attending you work with student support services before you arrive to create an Academic Access Plan (AAP). I had to fill in a questionnaire and provide some documentation from a medical professional about my conditions, how they impact me and any access arrangements I would need. All this information was then collated to form my AAP. With your consent this information is then shared with your lecturers to make them aware of how they can best support you.

Flatmates 

I have been lucky enough to find over half my flatmates through the applicant facebook group set up by the university. So over the past few weeks we’ve been getting to know each other. I had been quite anxious about disclosing my disability to them, not sure when the right time to bring it up would be. In the end one of my flatmates brought up the fact they had some health conditions, so me bringing up my M.E and ambulatory wheelchair use was not a big deal. As a flat we decided to write a brief summary of our conditions, what to do in an emergency situation and how other people can help if we are struggling so we know how to support each other.

  1. Creating a written flare plan 

This was something suggested to me by my M.E specialist. Whether it be a routine that has helped you navigate your way out of a flare before or certain things you do to help manage increased symptoms. Having a written plan to refer to that outlines the ways in which you’ve mitigated flares before should help it to be less overwhelming if it happens during the academic year. If you feel comfortable sharing this plan with a flatmate it will allow them to know how to help you through the flare. Whilst creating this plan won’t stop the flare from happening it will remind you of the practical steps you can take to help yourself survive the storm. 

I am hoping that taking these steps to prepare will help make the transition to university that little bit easier to manage.  

Disability Representation in Books: Girl in The Window- Penny Joelson

Off of the back of my post about disability representation in the classroom I decided to have a look into some books that included disability representation. I have been a bookworm for as long as I remember but before I became disabled myself disability representation wasn’t something I necessarily looked for when buying and reading books. It is only in the last few years I have come to realise just how important representation of all types is. It is well known that children look to literature as a source of identification. They are able to associate themselves with the characters they read about and these associations begin to shape their beliefs about themselves from a young age. 

In an ideal world, literature would accurately reflect all demographics within society. However this is not the case. Whilst in recent years progress has been made, many marginalized groups are still underrepresented within literature. One of these marginalised groups is disabled people.  

So today’s post is the first in an ongoing series about books I’ve read recently which have included disability representation. 

The first book I wanted to write about is Girl In The Window by Penny Joelson. 

Throughout Girl In The Window I really enjoyed how the story of Kasia’s recovery from Myalgic Encephalomyelitis (M.E) was weaved alongside the main storyline. The novel explains how Kasia developed M.E after a bout of tonsillitis. Initially leaving her house bound, isolated from her peers and the outside world.   

As someone with M.E I was a bit sceptical as to how it would be portrayed but it was done amazingly. Highlighting the physical, social and emotional effects an ME diagnosis has. Many parts of the book resonated with me greatly. A particular part that I could relate to was when Kasia had an event that she really wanted to go to but couldn’t physically manage. Her parents then suggested using a wheelchair to help, explaining that the chair could be used as a tool to help lessen the post exertional malaise (PEM). 

Throughout the novel many aspects of living with M.E are explored; from the importance of pacing and tackling activity in manageable chunks to the debilitating nature of PEM. As well as the isolation, loneliness and overwhelming desire to lead a normal life felt by many sufferers.

As the novel progresses Kasia makes gradual progress, establishing a daily routine that allows her to stabilise a baseline from which to build. The book accurately portrays how the journey of learning to manage a chronic illness is never straightforward; it’s not without the aspect of trial and error, the relapses and the setbacks. Sometimes no matter how careful you are, flares can still happen without an obvious reason. 

The frustration flares and PEM cause is also portrayed brilliantly. The way in which us chronically ill folk often seek to blame ourselves for the increase of symptoms “because we should have known better than to push it.” But in reality we are seeking to enjoy opportunities and events as much as the average healthy person. So sometimes pushing it a little bit to have some fun is needed, it makes us human.  

It wasn’t until after reading the book I realised that Penny herself had lived experience of life with M.E, falling ill aged 25 whilst working as a teacher. After over a decade of varying symptom levels Penny deems herself as better “about 60 to 70 percent” explaining in this piece “I live a full life and I value every moment but I have limitations. I don’t have anywhere near the energy of the average person my age. I can’t work full time. If I do too much, the leg pain and swollen glands and exhaustion return. I still have to be careful. I am better – but not recovered.”

This book is incredibly important to me. I won’t lie, reading it made me particularly emotional. It was the first time in a long time I had been able to fully identify with a book character with every part of me. To see my struggles reflected back to me in the pages, something I had missed for a very long time. 

Disability Representation within the Classroom

The other night I found myself in a bit of a Twitter rabbit hole. I came across a blog post called “Disabled? Or disabled by Society?”. The post raised the subject of disability representation within the school curriculum and classroom. 

This got me thinking about the representation of disabilities within my own education thus far. I came to realise that this was incredibly limited. On the rare occasion disability was raised in the classroom the instances fell into one of two categories; either highlighting the discrimination disabled people had faced throughout history or depicting them as some kind of superhero, defying all the odds, achieving so much despite their limitations. A particular memory that stands out was during an assembly in the build up to the 2016 Paralympic games. The assembly was about overcoming adversity, we had sat and listened carefully as a member of staff talked about how a collection of successful, able-bodied people had overcome adversity in their lives. The assembly concluded with us watching this Channel 4 short film. As we sat and watched, looking around you could see faces change, people were shocked at the skills these disabled people had. As the film ended the member of staff returned to the front and said the words “See, there are no excuses- if they can do it so can you”. The idea of disabled people being used purely to inspire us didn’t sit right with me, even though at the time I was able-bodied myself.

I began showing my first symptoms of ME a few months after that assembly. Being unwell myself brought the lack of disability representation in all aspects of life to the forefront of my mind. Suddenly, I couldn’t see myself reflected in the mainstream media anymore. There were no longer book characters with whom I could fully identify. No models in magazines showing me what the clothes they wore would look like sat in a wheelchair. In films portrayals of disability are often dodgy at best. Disabled characters (usually played by able-bodied actors) tend to fall into one of two groups: the superhuman, constantly overcoming their disability; and the person who is constantly miserable, asking “why me?”. That is of course if they make it through the film without dying!  

As I progressed into sixth form the disability representation on the whole became even more scarce. However, around this time I began to feel more comfortable with my identity as a disabled person. I began starting conversations that I felt needed to be had myself, bringing the perspective of disabled individuals into class debates, offering to answer the questions of both my peers and teachers to the best of my ability. A stand out moment for me was educating my sociology class on the process of claiming disability benefits. They were extremely shocked to find out that the process did indeed mirror to a degree the scenes in the film “I, Daniel Blake” that they had deemed as “ridiculous” and “incredibly frustrating” when watching it in the lesson prior.

I deem myself lucky, to a degree, that I became disabled at an age where I could better understand why the representation wasn’t there and could articulate my feelings on the matter to educate others. But I can’t help but worry for the younger disabled children who won’t understand why they don’t have a character to dress as on world book day who looks like them.

Don’t get me wrong, things are moving in the right direction. I’m sure if I were to go back to my primary school the amount of representation will have grown significantly since I left 7 years ago. There are so many more books and resources promoting diversity and inclusion now that building representation of all minority groups into the classroom has become somewhat easier than it was. I am so hopeful for a future where we will no longer be surprised when the protagonist in a story is disabled and a spectrum of disabilities are represented in the curriculum as standard- not just because there is someone in the class who uses a medical device. 

To any educators who may read this, please ask questions! 

If you have a chronically ill/disabled student in your class or tutor group and have questions- ask them!  Most students will happily answer or soon let you know if they aren’t comfortable doing so. I always appreciate when teachers take the time to ask questions in order to educate themselves a little more about my illness, it makes me feel seen. It also helps the teacher to support me better. Lastly, I guarantee that I won’t be the last chronically ill student you teach, with every question you ask knowledge is gained and that should make supporting the next chronically ill student who enters your classroom that little bit easier.