Getting to and from school or university

When travelling on public transport or on a bus:

• If you experience lots of fatigue, ensure you sit down on your journey
• On public transport in London, use TFL’s badge and card to access a seat when it’s busy (link to https://tfl.gov.uk/transport-accessibility/please-offer-me-a-seat )
• Get off transport a stop early to include a short walk in your journey if you’re looking for ways to increase your activity during the day

When driving:

• Ensure your seat is positioned comfortably and the back of the seat is comfortable
• If you experience low back pain when driving, a small cushion behind your low back strapped to the seat can provide some extra support
• You can buy reasonably priced heated seat covers that connect to your car
• Ensure the head restraint is positioned to be behind your head (not above it or below it). Also, check that the head restraint is in a neutral position, rather than pushing your head forwards.

When you’re carrying books…

Carrying can be helpful to keep the muscles in your back and legs strong, but if you find carrying things daily to be difficult, these tips may help:

• Use a locker to limit the amount you carry every day
• Use a rucksack with the straps on both shoulders or a cross-body bag
• If you are transporting lots of things, use a suitcase or box on wheels
• Ask for help from friends when moving between classrooms/lecture halls

If you find sitting for long periods difficult

For most people with axial SpA (AS), the most difficult thing during studying is the amount of time sitting at a desk. While you can’t reduce the time needed, there’s lots you can do to make it more comfortable.

Speak to your school, college or university about chairs available that may be more suitable. If they’re unable to change the seat, you could use a cushion or inflatable pillow to sit on or place behind your back to help.

No matter how comfortable your seated position is, the best remedy is to move regularly. If your teachers are aware of your condition, they should be happy for you to stand, stretch and move during lessons if your back is feeling stiff or painful. If you feel self-conscious about this, sit at the back of the classroom or do these simple seated stretches.

Top tips for studying at home

When studying at home, try to invest in a desk and chair to make sure that you’re set up well. Sitting on a Swiss ball or standing for a period of time while working can be really beneficial. For more detailed information, read my previous post on working from home.

Similarly to during lessons, it’s important to get up and stretch or walk regularly. When you’re studying at home, it’s really easy to get distracted and spend hours sitting in one position. Set a timer on your phone for every 50 minutes as a reminder to get up and move. This is great for axial SpA (AS), but it also helps your concentration and fatigue.

The best advice is to pace yourself

Managing your workload and pacing is really important to help manage fatigue and it also helps as a ‘safety net’ if you have a flare up just before a big deadline. Poppy shared some great advice previously about how she breaks down coursework and assignments so she can complete them gradually over time.

Listing the tasks you have to do can be really helpful to keep track of everything. You can then prioritise each task so that on days when you have less energy, you know what to focus on first. It can also be helpful to break each task down into smaller amounts. Not only will this help you pace your energy, it’s also less daunting.

Resting regularly can help manage your fatigue. It may be helpful to organise a quiet place you can access to rest during breaks and lunchtimes if needed.

Having a conversation with your school, college or university about your condition

It’s really important to speak to your school, college or university to explain that you have axial SpA (AS) and how it affects you, so that they can provide the support that you may need. Even if you feel you don’t currently need any accommodations, if the institution is already aware, then they can easily give assistance at a later date if anything changes.

When applying to college or university, it can be helpful to discuss what accommodations are available to help decide which place to attend.

We’ve put together this prompt sheet to help you discuss your axial SpA (AS) with your teachers and school/university. You can use the first sheet to clarify your thoughts and needs, then use the second sheet to communicate these. We’ve put a simple explanation of axial SpA (AS) on the second sheet, but it’s important you explain how your condition affects you personally.

Create a great healthcare team

It’s always essential to have a supportive healthcare team around you. When making decisions about places of education and accessing support, speak to your rheumatologist or GP about what supporting documents or guidance they can provide. Your doctor may be able to refer you to a physiotherapist or occupational therapist to help you see what support or accommodations may be beneficial to ask your school/college/university for.

If you’re moving to a different area for college or university, discuss this with your healthcare team to decide how best to continue with your ongoing care.

Managing your axial SpA (AS) well when you’re away from home

We have lots of information on our website about self-managing your axial SpA (AS), which may be particularly helpful if you’re living away from home for the first time. Visit the My AS My Life page to see the different topics we cover.

There’s lots of support available for you

Legally, educational institutions have to provide support to disabled students. Read our step-by-step guide to the support you should be able to access and how to do this.

For financial support, you may be entitled to Disabled Students’ Allowance (DSA). Find out more about this and how to apply here.

If you want to read more

Jenni has previously shared her experiences of training to be a physiotherapist while having Seronegative Spondyloarthritis.

Bethany Dawson and Bethany Bale are both university students who live with invisible illnesses. You can read about their experiences and also get more information on their non-profit organization BVisible here.

We asked a student!

We got in touch with Bethany (Dawson!) for her thoughts on studying with axial SpA (AS) and she gave us these incredibly helpful tips:

The impacts of Ankylosing Spondylitis came on when I was thirteen, and for all my teen years I believed that University was going to be something too big and too much for me. When I got to University to study Politics and Sociology, it felt like a bit of a shock. For all the advice that was given to freshers about how to settle in, how to study well, and how to succeed, none of it was tailored to students with a disability, let alone AS. So, here’s how I’ve managed to balance the two things:

• Communication. Get yourself well acquainted with your course leader, your personal tutor, and your lecturers. I’ve been incredibly lucky to be in the loveliest and most supportive department, which has meant I could comfortably explain my needs to all my teachers. On top of this, get in touch with your disability support team at your University. Even if you don’t think you’re going to need any special support, a conversation with them about you and your AS can show exactly how your University can support you. For me, I have been supported by using a laptop in exams as my hands are impacted by my AS, and I also get to record lectures in case pain or fatigue is too bad to retain all of the important information.
• Pacing. Right, so every lecturer is going to tell you not to leave your essays to the last minute, and whilst this is very true for your grades and stress levels, it’s really important to manage pain and fatigue, too. If you push yourself too hard with library all nighters and cramming for exams, your body won’t thank you for it, and chances are it could potentially aggravate your symptoms. Plan when you work and when you rest, and get to those deadlines with time to spare. Your mind and body will thank you.
• Believe in yourself, you can do this. This is a cheesy sentiment, which is my speciality, but truly: you’ve got this. It’s so easy to believe this is beyond you, especially when you’re in a lot of pain, but you can do this. You’re more than your AS, and you’re going to do this and smash it. Put yourself first, ask for what you need, take breaks and look after yourself. You can do this.

The key points

• Speak to your healthcare team about what support or accommodations may be helpful for you
• Use our prompt sheet to help you speak to your teachers and educational institution
• Making small changes can have a big impact on managing your axial SpA (AS) while studying

Zoë Clark is an osteopath living with axial SpA (AS) herself and has joined the NASS Helpline team to help with the unprecedented demand over COVID-19. You may have seen her blog posts previously written for NASS and she spoke at the latest parliamentary meeting in January and appeared on Channel 5 News. She’s joined the NASS team to help you keep active and feeling well.

Zoë is available on the Helpline, so if you’d like to have a chat then please get in touch and we can arrange a free call. She’ll also be sharing some of her top tips and answering any common questions, so please let us know in the comments if there’s any particular advice you’d like.

The Helpline is open 1000-1600 Monday to Friday on 020 8741 1515 or you can email zoe@nass.co.uk

The post Studying with axial SpA (AS) – a guide appeared first on ASone.

Growing up in a medical household led me to have a fascination in all things medical, and delving into the pre-hospital field has been an eye opening, rewarding and exhilarating experience.

I wanted to take on a career which is well known to put great strain on the body.

Many paramedics retire early with back issues. At my very first occupational health appointment I was questioned if this career would be right for me. This made me question my choices.

I felt they were putting a label on me. That axial SpA (AS) was just seen as a crippling disorder. I knew this wasn’t the case.

It’s an incredibly variable condition and everyone has a different story. I did not want my axial SpA (AS) to determine my life path for me.  I felt confident my axial SpA (AS) was well under control, and I planned to remain active so that my joints stayed as strong and healthy as possible.

Three years on, I can happily say my axial SpA (AS) hasn’t got in the way of my profession.

I do get pain when sitting for long periods in the ambulance and when I am doing more manual handling than usual on particular jobs. However, I stick to a stretching and yoga regime which prepares me well for my shift, and I had gotten into a habit of swimming regularly which eases my pain on my days off.

Prior to the covid outbreak I was only several weeks from finishing and qualifying to be a paramedic. After three years of hard work, I ready to be an independent paramedic working on the front line.

At the start of the lockdown it was decided that, because I take biologic medication, I had to be taken off the road. This means my qualification has had to be delayed and I will be starting my job as a paramedic later than hoped.

During lockdown, not able to work and with swimming pools closed, I have struggled. I felt frustrated I could not finish my course and start my dream profession. I felt jealous of my friends who were able to qualify early, and start work while I have been stuck at home.

My pain became more frequent and I suffered a bad flare up. Mentally, this took a toll on me and I desperately wanted to get back into a routine so I was ready to go back on the road as soon as I can.

I invested in a TENS machine which has been a great help with the pain. I can only speak from personal experience, but I really recommend them. I’ve got back into have been stretching daily, and trying to go on frequent walks to free my mind and appreciate the nature around me.

I hope by the time this article is published I’ll be qualified and working in my dream job!

This blog was written by Monika, who became NASS’s youngest trustee when she was elected at the age of 21. She aims to raise awareness and spread support to young people dealing with a diagnosis

The post On the front line – what it’s like to work as a paramedic with axial SpA (AS) appeared first on ASone.

Bethany D has suffered with chronic pain since the age of 13 (2012). She was diagnosed in 2017 with a non-radiographic axial spondyloarthritis (axial SpA), a condition within the same family as ankylosing spondylitis.

My journey into diagnosis was rather unforgiving. Not only is my condition non-radiographic, meaning it does not show up on X-rays, but I am also HLA-B27 negative, and that made the diagnosis more difficult. I spent a few years seeing different specialists before they could explain why I had this sudden, severe, pain in my lower back and legs. I saw some incredible doctors who made the process feel a little easier, and I had some appointments that were of a more challenging nature.

The onset of my chronic pain was sudden, contrasting to the previous 13 years of my life, in which the extent of poor health was a winter cold. I was hoping I could have an x-ray (or some other simple examination) which would show a perfectly curable condition. But alas, that did not happen. When the investigation process began, x-rays, MRI scans, DEXA scans and blood tests showed nothing. The words “non-radiographic axial spondyloarthritis” were spoken by my specialist rheumatologist in 2017, and it was at that point the previous 5 years of chronic pain made sense. I am now under an incredible team who are helping me manage my condition.

It might be that some of your friends or family have never experienced illness, and that might impact their understanding of what you’re going through. This is where the cliché “patience is a virtue” comes in handy.

You might have to have difficult conversations with your loved ones to help them understand what you’re experiencing and how they can best support you. If at first these conversations don’t feel effective, take a deep breath, get some head space, and try again.

AS is complicated (I still get surprises every now and then!), as are all invisible illnesses. It’s important to know that the task of teaching your loved ones about your condition might not be easy, but it’s definitely possible. In fact, once done, it can make your life a lot easier as it is likely to strengthen your network of support.

Doctors are another group of people whom you might have to have difficult conversations with. As mentioned previously, sometimes hospital/GP appointments can be challenging. The many appointments that I’ve experienced have taught me several important lessons.Firstly, be assertive. This might seem nerve wracking at first, but if you do face a hurdle and you need to push a little bit to make sure that the doctor fully understands you and your condition, it’s vital that you do this. I would suggest having a notes page with you, so that you can be sure you don’t forget to tell the doctor anything – and can keep track of what questions you need answering.

But the most vital part of your appointment is to have a positive attitude. If you go into the appointment with your best intentions, trying to get the most out of your time there, you will be far more productive than if you went in expecting the worst. Also, always try and find something nice about going in for your appointment, it will make the whole experience much happier (for example, there is a great bakery across the road from my hospital, and I always make a beeline for it when I’m done seeing my team. A good pastry is always uplifting!). The best way to achieve this positive attitude is to remember that this team of doctors are there to help you, and your positivity is going to really help them too.

Life with an invisible illness can be tough, and there will be challenges you’ll have to navigate. In terms of friends, family, and doctors, the most important thing to remember is that they are there to support you – and going into conversations and appointments with an optimistic smile will make even the trickier times that much easier.

The nature of having a non-radiographic axial SpA meant I had to fight my corner a little harder than normal. I did not have radiographic evidence to support my pain, and at points I felt as though I had to fight to ensure people, including doctors, friends, and family, understood the extent of my condition.

Now, however, with the help of my fantastic rheumatology team and a great support network, I am in much more positive position where I can learn from my experiences and help others do the same.

Bethany B was born with a rare and complex endocrine condition, and throughout her life – due to long term steroid treatment, amongst other things – has added various orthopaedic conditions to her ongoing list of illnesses. However, in 2014 (aged 15), she was diagnosed with inflammatory bowel disease (IBD) – an illness which affects around 7% of people with AS.

Unlike Bethany Dawson, I had never experienced life without a chronic illness – so I’ve never had, or at least couldn’t remember, experiences where I had struggled to be taken seriously due to my illness being invisible. This was partly because, until a few years ago, these battles were always held by my parents; I had relied on them for many years to fight my corner when needed. But it wasn’t until my IBD diagnosis that I truly first experienced the prejudice that exists towards invisible illnesses. Whether prejudice is the correct term to use – as I don’t believe that health professionals go into their field for any reason other than to help people – or whether ignorance is more fitting. I guess a case could be made that you can’t have one without the other.

Not only have my experiences highlighted the importance of education regarding invisible illness, but specifically the battles that young people face with an invisible illness.

Even though I had years of in-depth medical history, when I went to my GP complaining of IBD related symptoms, it was first suggested that I be referred to a psychologist rather than a gastroenterologist. Many of the issues I faced and the delay to diagnosis were due to the people that did not believe I was ill. I don’t write this to scare you or put you off from hospitals (because it’s incredibly important that you see trained health professionals), but to explain why we’re working to eliminate the assumption that young people ‘can’t be sick’.

Often, with a chronic illness, you don’t appear as ‘typically sick’ because you live with your symptoms every day. So, when this occurs in a young and healthy-looking person, it does become more difficult for people to empathise with your symptoms.
That’s why it’s important for you to have the confidence to fight your corner when you need to. However – it’s also important to go into all of these things with a positive attitude, because they won’t always be bad experiences. For example, I moved to University last year, a level of independent living that nobody ever predicted would happen, and within the first few weeks I was unwell and had to be taken into hospital. I was met with amazing care from incredibly understanding doctors.

However, I’d say that my main advice is to never let your health get in the way of your determination. Plans might change, you might end up somewhere else (or end up arriving there a few years later) but never let it stop you being determined to achieve what you want.

I know that’s easier said than done, but there comes a point where you can either decide to stay down or pick yourself up. I’d suggest the latter (after an appropriate amount of time feeling sorry for yourself with some Netflix and Chocolate – because it’s important you let yourself feel sad sometimes). You know that, through no fault of your own, achieving your goals – whether that be certain exam results, getting into uni, getting a job, going to work every day – it’ll be 10 times harder with an invisible illness.

It’ll be harder because your living with painful symptoms, and because of the misconceptions the world will have of you. That’s why you’ve got to make sure you keep your motivation and positivity.

Stephen Hawking said that ‘disability need not be an obstacle to success’, one of the core beliefs of BVisible, and he was exactly right.

The world deserves to hear your voice and be impacted by whatever you end up doing in the future – so don’t let your health keep you down. Because it will get better, and – even though there might be no cure – your tolerance will improve every day. Outside of making sure your condition is stable and not causing any additional issues – finding your individual coping mechanisms will make life easier too. You’ve got this! We promise.

As much as a chronic illness is not necessarily the hand you would have chosen in life, you can’t ignore how it will shape you as a person, the lessons you will learn from it and the stamina it will build for you.

Having an invisible illness is arguably one of the most character-building things that can happen to a person. You may not have asked for it, but if you learn to accept the condition within which you live you can go forth and achieve great things.

Bethany Dawson and Bethany Bale are two university students who have come together to bring illnesses that are out of sight, into mind. BVisible is a nonprofit organisation founded by the Bethany’s that aims to challenge – and ultimately eliminate – the misconceptions often welded to disability, especially disabilities where symptoms aren’t visible.

The post Life with an Invisible Illness appeared first on ASone.

Even today when I am trying to raise awareness of AS on social media a post about my cat gets more interest than any of the information and AS facts I have been posting. Frankly, it does anger me, and I don’t want to be angry. Sometimes it just seems easier not to say anything.

When I experience ‘bad days’, I tend to keep it to myself as well. My parents are extremely supportive and understanding, I know how much they care about me, so sometimes it’s just easier not to give them extra worries.

I was able to hide my diagnosis very well in the beginning. The only difference for me was that I had a reason for the pain, nothing else. However, when I started taking certain medications such as steroids my appearance began to change. I started gaining weight, lost interest in my personal appearance, was spending most of my day in bed and haven’t been socialising at all. It was mainly due to pain, but I also think deep down there was a shame of losing to AS. There was a shame of putting on weight and not being able to do anything about it. I felt that everyone just assumed I was ‘fat and lazy’ since AS is invisible and they couldn’t know the real reasons.

Whenever I actually opened up to people their reactions were very mixed. Most of the time they just looked puzzled and asked “Anky..what!?” Some treated me like I had become a fragile china doll and was about to break. Others would either be like “Oh yeah I get joint pain sometimes” or “At least it’s not something like cancer.” I’m not sure if that was their attempt at empathy or if they just didn’t know what to say…

It’s hard to be a young woman and suddenly start putting on weight, especially if you’ve always been a healthy size. My self-esteem dropped to the all-time low. I didn’t feel like ‘me’ anymore.
The once sociable, bubbly, outgoing girl now wouldn’t go out for days. When I had to cancel on my friends, instead of telling the truth I would say “I’ve got a sickness bug” or “I’ve lost my voice”. I thought they wouldn’t understand. Only now I know that I got it all wrong…

When you’re young and newly diagnosed you need to be open with your friends, family and educators. Don’t learn the hard way like I did. Being open and honest to those that matter or are closest to you will allow them to learn and accept changes in you. Those who are truly there for you will support you fully and look through your condition.

Around the time of my diagnosis I started a university degree in Physiotherapy. Enrolling in a course that requires to complete six, six weeks long placements over the span of 3 years turned out to be a whole different ball game! I chose this course as I could no longer perform my labour-intensive job at the time (due to the amount of pain I was in) and I have always been interested in physiotherapy.

Two things I found the most difficult about my course was sitting for extended periods of time in lecture theatres and more than anything fatigue.

Fatigue from travelling up and down to London on public transport. Fatigue while trying to keep awake in lectures after a week of not sleeping due to pain. Fatigue when getting up at 5am to go on work placement. Fatigue from trying to juggle essays, placements, lectures and consultant appointments. It has always been a real factor for me. Even now I didn’t manage to get a handle on dealing with it properly. I’ve only just about learnt how to work with fatigue and that’s if I limit my social life to zero!

I loved studying physiotherapy. It gave me such a privileged opportunity to learn more about my condition, weaknesses and disabilities. More than anything it taught me how to deal with them. How to stay flexible and strengthen my body. How to gently exercise when flaring or to deal with the after-effects of a flare.

Due to my condition I’m able to be more empathetic with chronic pain patients. I can have in-depth conversations with rheumatology patients and recommend things that I know work first hand.

I also met my best friend who suffers from Lupus on that course. It was so nice to have someone I could relate to! We often joked about our symptoms and things that only someone who lives with a chronic condition can understand.

While working with patients and other physiotherapists I finally felt I’m wanted again. I felt I’m actually good at something and I started to think: “I can do this, I can be a good physio!” That was my turning point. I decided that AS is not going to define me.

I kick started myself into healthy eating and made sure I exercised as much as possible. I think it’s important to tailor your exercises to your personal needs and preferences. I hate walking, so I cycle and swim or ride my horse and do specific stretching and strengthening exercises.

Don’t get me wrong, it’s not going as ‘nice and easy’ as it may sound. I have been eating healthy and exercising for the past three years and have only managed to drop a stone. It can be discouraging, trust me, especially when even health care professionals are doubting you! It is so frustrating!

There are still things I’d like to do better, like striking good balance between exercising and resting, or losing more weight. I think everyone have those issues, right? The most importantly I’m beginning to learn to love myself again. I start to see things out there in the world that are worth living for.

I live my life with a mind set: Yeah, I may be ‘crooked’ compared to my friends and I spend most of my free time in bed, but that is the new me and I’m ok to give myself a break. I may be mourning who I used to be, but I can also embrace who I am now!

I’m more accepting of AS. I’ve learnt to forgive myself more and accept my short comings.

I am not the same ‘me’ that I was five years ago. I feel stronger within myself than I have ever before. I’m more open about my AS and always trying to teach others about this condition and raise awareness. There’s a quote I saw recently which really sums up my attitude: “You either live to survive or you live to strive” and I certainly aim to do the latter!

Steph is a newly qualified physiotherapist that happens to have ankylosing spondylitis and blogs about it.. a lot! Find her on Instagram, or visit her Blog.

The post Diagnosed with ankylosing spondylitis. Journey to accepting myself again. appeared first on ASone.

I study Inclusive Education and Disability Needs at Manchester Metropolitan University. Before starting my course I was in touch with the disability service to discuss ways they can support me. I found out that I was eligible for the disability students allowance (DSA), and was provided with a laptop and other useful things to make studying at home easier with hypermobility, fibromyalgia and ankylosing spondylitis. The disability service had also put a personal learning plan into place, so that my lecturers would be aware of what was going on and how they could support me. The disability team was very helpful with filling out the forms with me or gaining the evidence from the rheumatologists and offered a lot of advice.

However, I’ve found that some of my lecturers show more understanding of my conditions than others. The same lack of understanding concerned recommendations disability service have outlined in my personal learning plan.

To be fair, some lecturers appeared to not understand at all! From the million and one hospital appointments I had to attend, to some of the lectures I missed. Being in my second year now I can probably count on my fingers how many times I’ve been provided an ergonomic chair for my three-hour lectures.

I suppose because AS is not a visible condition and because I generally just ‘get on with it’ they don’t see the times I really suffer. When I’m stiff because I have sat on a hard-plastic chair for hours, or when I’m in a flare and even to sit down hurts!

I’ve always had the approach of ‘there’s no point moaning and dwelling on it.’ However, I do get frustrated when I have to leave lectures to stretch, what may not have had to happen if I was provided with the correct chair. At the end of the day it’s very frustrating and not inclusive at all. Don’t get me wrong, some days I do get a chair off some lecturers, but other times I just have to go and find it on my own…

It shows that communication between the disability team and lecturers could be improved. Lecturers should also set up meetings with the students with personal learning plans, but for me that never happened. I think that awareness of conditions like ankylosing spondylitis could help; people should be educated about invisible diseases. Not everybody has to be in a wheelchair or using a walking aid to show they are in pain.

I have found actual studying to be the hardest. Sitting down all day at a desk, forced to read a stack of journal articles for an assignment is really not great. I usually have to pace myself and try to start the assignments in plenty of time to account for flare ups or fatigue. I start off with reading the assignment briefs and highlighting key parts. Then, I bullet point and work out how long I have before the submission date.

When the fatigue kicks in, I usually try to carry on at first, hydrate myself and stay focused. However, short breaks and realising that you cannot always carry on with the work is a key. I will go away and do something else, completely away from my laptop and desk. When I’m flaring, sometimes I have no alternative but to read and carry on working.

I know that I can apply for extensions if needed, but this is a difficult road and there is not a guarantee as it is up to the individual lecturer. As soon as I have submitted one assignment I will usually start searching for readings for the next one.

When it comes to other students some are more understanding and some less. Sometimes I can almost feel the ‘funny looks’ from people who don’t understand why I get different things due to my conditions.

I recently did a presentation for one of my units on AS and pregnancy, and this raised some awareness of the condition with other students. I tend to not boast about my conditions, and when it crops up or someone asks I’ll talk about it then. But like I said, I’m quite a positive person and don’t tend to dwell.

For times when I do group work with other students I tend to be honest straight away. I let them know if I have any hospital appointments or cannot meet. I also let them know that I need to get my work done quite early due to the conditions.

My rheumatology team have offered on several occasions to write letters explaining my conditions for my lecturers and for the disability service. They wrote a letter to the disability team and student parking to get me a permit for parking at the University campus (meaning I would not have to travel far).

Overall, I think the most important things I can share about studying at University are: know your limits and know when to stop working. Understand how to pace yourself and don’t leave assignments till the last minute. That’s the key for me!

Also, if you feel you are not being supported enough at University discuss this with the disability service right away.

Poppy is a 21 year old student from Manchester. She’s also diagnosed with Ankylosing Spondylitis and Fibromyalgia, but refuses to let them get in the way of her passion for travelling and fundraising for NASS with her boyfriend Ben. You can find Poppy on Instagram @w0nderw1nder and on twitter at @poppymaelangxxx 

The post University and ankylosing spondylitis: juggling the work load and the pain appeared first on ASone.

Earlier on in my degree, I really didn’t feel comfortable telling my teachers that I had arthritis. I managed it myself because I didn’t want anyone to think that I wasn’t fit to work, or to be a problem. When I started on Methotrexate, I decided to be more open about my arthritis as I needed to tell my educators that I wasn’t supposed to come into direct contact with active shingles infections.
Initially, I was worried about how people would react: would they think that I could still be a good physio even though I have arthritis? Would my diagnosis put them off asking me to help out with any heavy manual handling tasks?

I wasn’t sure if I could handle people telling me to my face that my arthritis would stop me from doing the normal things required as a physio student, so I decided to tell my lecturers in advance via email.

I was always fairly brief about my diagnosis but I would give a summary of how my arthritis was affecting me at the time and if I needed any adjustments to be able to work. I would make sure to mention if I had any appointments or blood tests during the placement. I would also always copy my lead lecturer into these emails just to make sure that my University knows and to cover my back if anyone at placement did kick up a fuss.
It turned out I had nothing to worry about! My placement facilitators were absolutely amazing about my arthritis, and often would check if there were any patients with shingles on their wards to let me know. We often wouldn’t have detailed conversation about my arthritis and would just confirm that nothing had changed.

When I did have small flare ups in peripheral joints while I was on placement, they were great at advising different positions that I could sit or stand in to take some pressure off my sore joints. That helped with being able to participate in the placement fully.

Because I was learning to become a physio, I was very fortunate with everyone having a good basic understanding of inflammatory arthritis. However, if I was on placement outside of the healthcare field I would probably give a brief explanation of what inflammatory arthritis is to help my educators understand how it might affect me.
I think one of the most important things for me having placements in a healthcare setting was understanding which infectious diseases to avoid. I had quite a few discussions with my rheumatologist, rheumatology nurse and later my biologics nurse about what patients I could and couldn’t treat. Since I haven’t been assessed for personal protective equipment, I wouldn’t be able to treat people with flu for example. Especially if someone had a rare infectious condition I would avoid being involved in their care until I had confirmed this was safe with my team. Since I have become a qualified physio and have been assessed for specific personal protection equipment by my Hospital Trust, I am able to treat all of the patients.

Jenni is a 21 years old, fresh out of Uni Physiotherapist, you can follow her story on youngarthur.blogspot.co.uk

The post My experience with work placements and spondyloarthritis appeared first on ASone.

My Physiotherapy course had a perfect balance between practice and theory. I had a chance to practice various treatments and techniques with my peers, but I also needed to sit down and learn the theory behind these therapies and how to adapt them to individual patients in different settings. Over the three years, the practical aspect of my degree moved more to real life settings and was developed on placements, whereas our lectures, seminars and assignments focused more on the understanding of the application of Physiotherapy and Healthcare.

The most difficult thing for me was finding the best place to study and adapting it to my needs resulting from arthritis. Personally, I could only concentrate in my University’s library, because of that I’ve spent a lot of time doing assignments away from my flat.

Most of us know that sitting down for a long time isn’t brilliant. I found that if I sat for longer than 30-45 minutes my joints would became a lot more of a problem. Because of that, I tried to pace my work, much like I would if I knew I was going to have a really busy day with loads of walking. I would only do 30 minutes of work at a time and then I would get up and walk around for 5-10 minutes. However, I found it difficult to concentrate on assignments when I had to keep getting up for my joints and could easily loose my train of thought.

It took me quite some time to work out how to write assignments in 30 minute bursts but I developed a method which worked well for me. I would start planning assignments long before they were due in. That meant if I had a flare, or was unwell and couldn’t work for a while, I was still ahead of the curve. When I planned assignments, I would first write a detailed checklist of everything that needed to be in it from the information our lecturers had given to us. From that checklist, I would then make an extremely detailed mind map for each section of the essay with references (which I would save onto my computer), and then I would check all the information on the mind map against the mark scheme to make sure I hadn’t missed anything. Where possible, I would organise a meeting with my module leader to make sure that I hadn’t missed the point of the assignment before I started the actual essay.

Now all of that takes a fair bit of time but at the end I had a mind map which was essentially my assignment just not written in paragraphs. It also meant that when I did need to take a break for my joints after 30 minutes of sitting, I wasn’t going to loose my train of thought because it was already written down.

I also made sure to keep one of my lecturers up to date with how my arthritis had been. I had numerous flares while at University which weren’t easy to deal with but having someone ‘on the inside’, knowing about my condition and how it was affecting me was really important. I knew about what services were available to me and my University, as most would, had a Student Support and Wellbeing Service where I could seek further advice about getting help with my studies had I needed it.

My Rheumatology team also repeatedly offered to write letters to my University to have extensions on any assignments because of my joints, to provide a stronger case if I wanted, which I think would have been very useful if I had a flare that stopped me from being able to work. However, keeping my Rheumatology team in the loop about how my arthritis impacted my Uni work was very useful and was a discussion we had at most appointments.

I think the most important thing to know about studying with arthritis is finding a way that you can work effectively without overdoing it for your joints, and seeking support wherever you need it. It does take time to learn about how you learn best, but once you know it, take time to work out how to make it work for your joints as well.

Jenni is a 21 years old, fresh out of Uni Physiotherapist, you can follow her story on youngarthur.blogspot.co.uk

The post My experience with studying and spondyloarthritis appeared first on ASone.

What is DSA?

DSAs are grants to help pay the extra essential costs you may encounter due to your AS. They can pay for a variety of costs caused by your AS, depending on your needs, that includes: specialist equipment, non-medical helpers or extra travel.

DSAs don’t cover disability-related costs you’d have if you weren’t attending a course, or costs that any student might have. That’s why it’s important for you to think about any new essential expenses that can appear when you start Uni.

Do I qualify?

You are eligible for DSA if you meet the definition of disability under the Equality Act 2010. That means you need to have:

A physical or mental impairment that has a substantial (more than minor) and long-term (12 months or more) negative effect on your ability to do daily activities.

You also must be an undergraduate or postgraduate student, qualify for student finance from Student Finance England and your course has to last for at least a year.

You are not eligible if you’re an EU student, eligible for an NHS Disabled Students’ Allowance or getting equivalent support from another funding source, like your university or a social work bursary.

What could I get?

The support you can get depends on your individual needs and not on your income. DSAs are paid on top of your other student finance and don’t have to be repaid. Pretty neat so far, right?

After your application and assessment is successful the money will be paid either into your bank account or directly to the organisation providing the service or equipment.

Full-time and part-time undergraduate students can get up to £5,358 for equipment (for the whole course), up to £21,305 for non-medical help (a year) and up to £1,790 for extra travel (a year). Bear in mind this amounts are the maximum you can get. It’s aimed at supporting those with a high level of need, so most people get less.

Application and assesment.

You should apply for DSAs as early as possible and there is no need to wait until your course has been confirmed.

Once your eligibility for DSAs is confirmed, Student Finance England (SFE) may ask you to contact an assessment centre to work out what help you need, but don’t book this until SFE asks you to. A Study Needs Assessment is an informal meeting with a Needs Assessor to discuss what equipment and support they can provide to help you during your time at school.

After the assessment, you’ll get a report listing equipment and other support you can get for your course.
You won’t be reimbursed for any equipment bought before the assessment so it might be a good idea to wait with the shopping until you’ve been assessed.

You can find more details on DSA and the application process here.

The post DSAs, or how you can improve your student finances. appeared first on ASone.

Equality Act 2010 is the key.

Under the Equality Act 2010, universities have a duty to help meet disabled students’ needs. You’re considered to be disabled under the Equality Act 2010 if you have a physical or mental impairment that has:

• Substantial (more than minor)
• Long-term (12 months or more)

negative effect on your ability to do daily activities. Under this Act, universities and colleges must make ‘reasonable adjustments’ so disabled students aren’t significantly disadvantaged compared with other students who aren’t disabled.

First things first.

Your first step should be check how your chosen universities can help you. You can ask at open days or look on their websites.

When you start your UCA application form remember to tick the ‘disability’ box.  Many universities will contact you beforehand so they can put any necessary adjustments in place before you arrive. Even if you choose not to (or forgot…) tick the box, still try to contact your university before arriving.

Register with the Disability Team.

Next thing to do is register with your university’s ‘Disability Team’. Each university has a slightly different name for their team. Ideally try register before September, so everything is in place for the freshers’ week.

Think about making an appointment with one of the co-ordinators. This way they can verify your disability (don’t forget the paperwork from your doctor!) and come up with a plan for you. This is the time and place where you can communicate what you need. Try to think about it beforehand and come prepared. Remember, some universities might seem less friendly and approachable, but they still need to respect your needs.

Reasonable adjustments you can expect.

Your university must offer ‘reasonable adjustments’. Even if you’re currently managing your AS very well, think it through. Take into account your worst days, not the best.

Some difficulties to consider:

• Irregular attendance or lateness (morning stiffness doesn’t care what time you start)
• Periods when you’re unable to study or complete assignments on time (flares don’t care about your coursework deadlines) 
• Concentration and stamina problems (painsomnia and fatigue are nothing new to you).

Adjustments to meet your needs can include:

• Flexibility in attendance (or being late)
• Class and exam arrangements (rest/stretch breaks, adjusted sitting, extra time)
• Assistance in supplying you with handouts and lecture presentations in advance
• Library arrangements (they can deliver materials to you rather than you travelling to a campus in a different city).

Deck the halls (of residence).

If you’re planning to stay in university accommodation do think about any needs you might have in advance. A en-suite room or a room on the ground floor might be a life saver when your pain and fatigue is really bad. If you are on biologics think about how and where you’ll be storing it.

Take time to talk.

Everything might be in writing but do make time to chat with your department and tutor to make sure they understand your needs.

If you feel your needs aren’t being met try to speak with the Academic Advisor, Specialist Advisor, Equality and Diversity Office or any other service that is in place to deal with your query. If you’re still not successful you might consider a formal complaint and take it further to external organisations.

Most of the universities provide counsellors that can help you with a range of personal and emotional issues. If you feel like AS is taking a toll on your mental health don’t hesitate and contact your university services to schedule an appointment.

The post Your first steps at Uni. Know your rights and services available. appeared first on ASone.