Having been diagnosed with axial SpA (AS) when I was 23-years-old, I was concerned about what the future would hold. My dad has the same condition, and while I was growing-up I witnessed some of the difficulties and challenges the disease causes in everyday life.

As someone who is usually very positive and optimistic, I felt as though I could handle it. When I started experiencing symptoms and speaking with my dad about it, we both had a suspicion it could be axial SpA (AS).

Even though I had my suspicions, actually hearing my rheumatologist give me the diagnosis felt very daunting.

Here’s a video I made about Ankylosing Spondylitis talking about how I was diagnosed:

Being very passionate about my work and operating two businesses, I am a mobile DJ and website designer. One of my immediate concerns after I got diagnosed was being able to work in the same capacity as before.

Once I came to terms with my diagnosis I became determined to continue doing what I enjoy and decided nothing was going to stop me.

I created an action plan. I thought what could I do to best manage the condition, after a lot of research and speaking with my rheumatologist it was clear the answer was regular exercise, monitoring pain levels and diet. I started working with a personal trainer which helped me create a workout plan and ensure I was exercising with a good technique to prevent injury. Once I had a regular workout routine and had a healthier diet I noticed my pain levels reduced, I’d still have flare-ups from time to time but they were more manageable.

After a while I was fortunate enough to attend a two week axial SpA (AS) course at the Royal National Hospital For Rheumatic Diseases (RNHRD) which allowed me to learn more about the disease, learn new exercises and speak with other people that had the condition which was invaluable. I’d highly recommend the course to anyone that has the opportunity to attend.

Nowadays, I continue to manage the disease through regular exercise, I aim for 3 gym workouts per week, daily stretches, regular walks (having a dog certainly helps) and attend regular NASS sessions for an additional gym session and hydrotherapy. I also keep an eye on my diet as I’ve noticed too much fatty food tends to trigger a painful flare-up.

Taking the time to learn about axial SpA (AS) and how my body reacts to certain situations has allowed me to continue working and doing what I am passionate about.

While I want this post to be positive and inspire others, I want to make it clear I still experience pain, flare-ups and heavy fatigue on an ongoing basis. I’ve accepted the condition isn’t going anywhere and know sometimes it’ll be more difficult than others, however, I’m certainly not letting this disease take control of my life.

Richard is a multi-business owner who lives with axial SpA (AS) and has started documenting his journey on YouTube. You can follow Richard on Instagram, YouTube and Twitter.

The post Running Businesses with Ankylosing Spondylitis 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.

I had great initial care after being diagnosed as I was under private healthcare. Now I love the NHS and I love working for it but I had what I now know to be glaringly obvious symptoms of AS and I saw 3 different orthopaedic surgeons, 2 rheumatologists and countless other healthcare professionals in the 13 years and none of them managed to piece the seemingly obvious puzzle together, until I went private and a week later had my diagnosis. Part of me feels this is because of my gender as in university even today you are taught that AS is almost always found in men. Then when I was offered Anti-TNF I was told I had to go to the NHS.

I was referred to one hospital that shall remain nameless, in the 2 years I was under their care I was “forgotten in the system” when I was told I needed to change from humira to Enbrel and went 4 months with no medication. When I was flaring I had no access to my rheumatological nurse as they never answered the phone or rang me back and when trying to discuss my peripheral symptoms was told “We are only interested in your spinal pain as AS only affects the spine” by the head of the department.

Now there are countless studies out there. One promoted by NASS that conclude women are affected by a higher disease burden and are more likely to have peripheral involvement. As I progressed through my degree I began to realise this is not the sort of service I should be putting up with so I put in a formal complaint to PALs and changed hospitals and it was honestly the best thing I ever did. It was hard to believe that 10 miles “down the road” I was receiving such different care. I felt listened to and more importantly heard and believed which made me feel empowered over my care, and that there was light at the end of the tunnel. It was this feeling that I knew I needed to give my future chronic pain and rheumatological patients.

As a qualified physiotherapist I never let any patient leave my cubicle until they knew I understood and I am happy to advocate for them and empower them to take charge of their health. The unfortunate thing as a healthcare professional is you get a 1 hour lecture on AS and you are taught the “red flag” questions but actually until they’ve met those patients affected or experienced that level of pain and at times unusual symptoms they are usually under prepared to deal with the AS cohort.

But don’t get me wrong there are some amazing healthcare professionals out there but again these are few and far between and usually each trust only has one rheumatology specialist physiotherapist which seems absurd for such a massive cohort of patients and usually leads to long waiting times and plenty of frustration.
One other thing I’ve noticed as a healthcare professional is the massive gap between paediatric and adult services. I was lucky enough to complete a student placement at Great Ormond Street Hospital in the paediatric rheumatology department. Now I feel paediatric services are miles ahead of adults! They have inpatient rheumatology wards where patients flaring are sent to receive intensive treatment, those that are coming off their immunosuppressant drugs for procedures are carefully monitored by the medical team. They have access to specialist rheumatology physiotherapists as inpatients to help keep them moving and reduce their pain during a time they often are off their medication and are not exercising as much as they are unwell or recovering from a procedure.

They have regular check-ups like the adults except in the room are the consultant, the physios, the occupational therapists and the psychologists, holistically treating the patient all together in one room as a team.

This team then meet separately once a week to discuss those more complex patients and plans to help them if they are struggling with pain or day to day activities, they write to those children’s schools advising them on their limitations and ways to help them thrive.

In London alone you have GOSH, the Evelina and Stanmore who provide a 2 week intensive rehabilitation course for those children newly diagnosed or struggling to cope, the adult services have Bath and Stanmore in the whole of the country… I’ve never come across an inpatient adult rheumatology ward, we as adults are expected to try and see our overbooked rheumatologists as outpatients and still cope living at home, many of whom live alone and if we are admitted we are admitted to wards who have no idea how to manage our condition. Equally I’ve come across so many arthritis patients struggling off their meds, had surgery and that has brought on a flare. I enjoy treating these patients and try to pick them up on whatever caseload I am managing at the time, so much so I’m hoping to highlight the gap in my trust for inpatient rheumatology physiotherapists.

And equally I don’t think I’ve ever experienced a multidisciplinary meeting as patient or a professional for rheumatology patients, it’s a case of seeing your rheumatologist once every 3-6-12 months and the rheumatology nurse in-between, and if needed you can be referred to a rheumatology physiotherapist but they have a waiting list of weeks and by that point your flare is most probably over.

I really feel we are at a point where not only we should be highlighting the amount of time it takes to get patients diagnosed, but with the NASS lead Every Patient, Every Time campaign, we should be highlighting a national standard of treatment for patients from borough to borough and from paediatric to adult services because at the end of the day, if we as patients are expected to self-manage and champion our own care of our long term condition then we should have access to the same standard of professional and care wherever we are in the country.

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 An insider view on services available for ankylosing spondylitis patients appeared first on ASone.

1. Walk or ride at least part of the way to work.

If you can cycle or walk (or even run) to work, this can be an excellent way to fit more activity into your day – and you’ll arrive feeling fresh and energised, with a clear mind. Not everyone lives close enough for this to be a realistic option, but you can still find ways to make at least part of your trip more active. If you use public transport get off a stop or two early and walk the rest of the way or if you drive see if you could park a bit further away. If it’s a big car park try parking at the far side. Experiment and try a few different things to see what works for you.

2. Take the stairs.

Take the stairs rather than using the lift. If it’s too much for you then think about taking the left part of the way and walking just one or two floors. If you struggle to walk up the stairs then how about taking the lift a floor or two higher and then walking down the stairs.

3. Use every opportunity you have to get up from your desk

Pretend it’s the ‘80s – instead of emailing your colleague walk across to their desk and have a chat with them face to face (weird, I know!).

Encourage people to have standing or walking meetings rather than sitting around a table. Research shows standing meetings can also be a good way to increase efficiency, making sure things don’t drag on unnecessarily. For smaller groups or one-on-ones, a walking meeting can be a great way to get things done while getting in a little physical activity. For smaller groups a walking meeting can also help reduce tensions and encourage more creativity and free-flowing conversation. And if the meeting goes really badly, you can just speed up, walk away and never come back.

4. Try a standing desk.

If it’s possible in your office, standing up to work can be a great choice. It’s needs to be easily adjustable so you can alternate between sitting and standing throughout the day. Getting a standing desk or similar adjustment can be covered by the Access to Work grant.

5. Turn waiting time into moving time.

Waiting for the printer, or the kettle to boil? Take the opportunity to do some stretching exercises. Check out the NASS Back to Action exercise programme for some suggestions. Alternatively, ask your physiotherapist to show you some suitable exercises.

6. Set a reminder to move.

It’s easy to get engrossed in your work and forget to move until you realise you are feeling stiff and in pain. Some wearable health devices will vibrate when you haven’t moved for a while or you can set reminders to remind you to take a break. Then you could get up and go for a short walk around the building or up and down the stairs. You don’t have to go for long. Not only will it get you moving, it will help clear your head, so you go back to work feeling a bit more refreshed.

7. Get moving at lunch time.

Do take a lunch break and try not to take your break at your desk. Having a break during the day is beneficial for your mental health and well-being, and it’s a good opportunity to get active. Instead of eating at your desk or sitting down in the kitchen area for your whole lunch break, make a point to get up and move for at least part of the time. Maybe go outside for a walk and enjoy the change of scenery.

The post 7 easy ways to get moving at work appeared first on ASone.

I’ve been moved by music as long as I can remember. When I was tiny I had a wind-up toy that played “Somewhere Over The Rainbow” and I remember it making me sad and happy all at once. Sometimes I couldn’t bear to listen to it and sometimes I couldn’t get enough! Luckily my parents recognised this love of music in me and my Dad bought a piano from a mate in the pub for £70 when I was about 4 and arranged lessons soon after.

12 years, 8 grades and a few scratchy self-taught guitar chords later, I started writing my own songs. I wrote all the way through university (where I studied French and Italian) and while my friends were applying for graduate jobs I knew I had to move to London and give music “a shot”. I thought that if I found myself a couple of years in and hadn’t got anywhere, I could always fall back on my degree. Fast forward a further 10 years and I found myself still living in London, still making music and doing unappealing, low-paid jobs to support my music career. I’m not sure where those “couple of years” went but I can only think that music really is who I am and I can’t not do it.

At around this time my partner saw a chiropractor after a minor road accident. I’ve had pretty poor posture for as long as I can remember and she suggested I go too. Shortly after my first appointment, I began getting pain in my legs and hips. When I returned for a second appointment, I told the chiropractor about the pain so she manipulated my spine again to try and relieve it. By the next morning I could barely move.

I consider myself very lucky given that the average diagnosis time for AS is eight years. My GP initially diagnosed a slipped disc and prescribed naproxen and rest which now of course I know only makes things worse! I returned six weeks later, with terrible fatigue and still in chronic pain, which by now had settled into my SI joints and lower spine and was waking me up 8-10 times per night. The GP ordered blood tests and an MRI scan which showed inflammation and sacroiliitis and I was referred to Rheumatology where I was diagnosed almost straight away. It took just 5 months from my first GP appointment to diagnosis.

Throughout this period, I slept an awful lot and my mood was low due to my debilitating pain. I had very little social life and it was definitely one of the darkest times of my life. Some days I wondered if life would ever get better and looking back it seems pretty remarkable that I was still performing as well as working two jobs. I’m stubborn like that and will keep going until I drop! I regularly needed help getting on and off stages and I held a launch party for my single “Hurricanes” while practically immobile on stage. I always suffered much more in the days after a concert because the travel and transport of instruments as well as the show itself were so hard on my body.

Looking back I think I could have paced myself better, said no to the smaller shows and focused on the more important ones. I feel grateful to my creative partner, Stefano, for keeping me going through these times – I think without him I may well have given up music. If you can find an ally, someone to share the journey with, life can be so much better.

Over the past three years, things have gradually improved health-wise with a mixture of medication and exercise. I swim regularly and have recently started yoga classes to try to keep flexible. I feel the benefits both for my physical health and my mental health. Everyone tells you how important exercise is – it really is. I’ve been lucky to be able to change my job and I now work fewer hours closer to home doing something I enjoy much more. I will always be grateful to AS for giving me the push I needed to make that change. My music career has moved forwards too: I have just released a new album (this time I could move at the launch party!) and in the past year I have performed in the USA, Germany and Spain as well as across the UK. I still find the travel a challenge but try to allow myself to rest before, after and between shows if possible.

Some days I hate AS, the pain, the fatigue and the limits it puts on my life. Other days I am grateful to it, for bringing about positive changes as well as showing me what really is important.

Hannah Scott performs contemporary folk music and her new album, “Pieces Of The Night” is out now. She also lives with AS and supports NASS every time she has a chance. You can find her music and follow her website, facebook, twitter, instagram and youtube.

The post On tour with ankylosing spondylitis: my story and music appeared first on ASone.

The application process is usually the first point at which you have to think about your AS: you will get asked if you consider yourself to have a disability. Being the stoic, almost pig headed person I decided to put “no” in this box. As far as I’m concerned I do not have a disability. Whilst I’m lucky enough to handle full time work I was not going to discriminate myself (or in my mind jeopardise this job opportunity!) because of AS.

In hindsight, perhaps it was not the smartest thing to do…

I recently started to work as a physiotherapist for NHS and have been restricted in what specialism I can go into. I change specialism every 4 months and I was about to enter the ‘respiratory’ area, but due to being immunosuppressed (on antiTNF therapy) I’m vulnerable to catching an infection, thus not able to treat some patients. Now, after 8 months into changing specialisms, I have to go to occupational health to be assessed for what sorts of things my employers need to adapt to help me in my post.

Knowing when to broach the proverbial elephant in the room that is AS can be extremely subjective. Do you do this on the application? During the interview? When you’re offered the job? Or on your first day? I think this is a personal choice but I would recommend to do this is as soon as you can or feel able to.

At first I was a bit defensive with this. I was sure I won’t need any help or support within my role and I was just as able as a healthy person (which I think I am!). Now I’m beginning to realise that disclosing my AS to the employer may actually prove to be quite helpful. Especially if I come up against less than helpful seniors or if I experience a flare up to the point in which I am not able to work.

I think it is important for us as young people to protect the future us: older, employed but potentially more affected by our AS. It is better to have that safety net in place than scramble around at a later date when you may not be in the best position to support yourself.

I’ve always been completely open with my employers as I was with my educators. I found (especially working in healthcare) them to be extremely supportive and treat me like anyone else… Well unless they want to ask questions or seek advice for other arthritis patients (which happens quite frequently!). If you don’t work in healthcare, then you may want to direct your employers to the NASS website or give them NASS guide for employers with information on how AS can and may affect you.

You should also ask for an appointment with the occupational health department. Don’t worry, they aren’t there to say you can’t do your job, but rather, what can be done to help you do your job. Ergonomic furniture is a must for anyone who has a predominantly desk based job – standing desks, personalised chairs etc…

I’ve also seen a lot on social media that some bosses are less than accommodating for those who take a lot of sick leave. Now understandably we may be prone to long periods of frequent periods of sick leave due to flares, suppressed immune systems, medical appointments, unexpected medication or inflammation side effects, but we should not be disciplined due to this. That’s  why going to the occupational health at the beginning of your employment is the best way to protect your income and job stability in the long run! Also, don’t forget you’re protected under Equality Act 2010, you can find more on your rights under this act here: Know your rights at work!

In conclusion: Choose when you are going to tell your prospective employer but don’t put it off for too long. Ask to be put in contact with occupational health as early as possible and work with them to create a plan and environment suiting your needs while accommodating personalised elements like flare plans etc… Most importantly don’t ever feel that AS will stop you from going for the job you want. It never stopped me! That’s despite many, many people commenting on my fitness and appropriateness. And you know what? 8 months down the line I’m in the job I always dreamed of doing!

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 Work with ankylosing spondylitis: importance of a safety net. 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.

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.

I’m 27 and I’ve been working as an actress for almost 5 years now. I started showing symptoms of AS on and off when I was 20. I suspect that a dose of salmonella picked up on holiday in India could’ve triggered my disease, but i didn’t get a diagnosis until 4 years later, when pretty much overnight i became crippled by the pain building in my hips and back.

Rehearsal hours are pretty similar to a regular 9-to-5 job, sometimes working on Saturdays too depending on the contract. Then, when the show goes up you’re working as many shows as scheduled, 6 days a week. It can be very demanding and requires a good level of stamina to maintain the performance energy expected from you for the length of your contract.

Back before my diagnosis I didn’t have any particularly long jobs, which looking back was a blessing in disguise! I remember being on a concoction of every type of the strongest painkillers available to me, just to physically make it through the day. I moved back in with my parents who got me through the worst days, sometimes driving me all the way to and from work to save my energy and let me do my dream job.

Dealing with the chronic fatigue was also an interesting curve ball in a job that requires you to be the best version of yourself 100% of the time. Sometimes I was so lethargic and suppressed going in to auditions I’m sure they thought I was on drugs or something. Not ideal when you’re about to start your first professional theatre job which included a week long tour around the Ireland after the original theatre run. As someone who naturally has a very positive and upbeat personality, all this was extremely frustrating for me.

The most difficult part of this experience was not being able to talk about it. Mostly because I didn’t know how to easily explain it myself ! I was totally in the dark about what was wrong with me at this point. The people I was working with at the time were some of the best, and I’m still friends with them today. But they didn’t know what I was dealing with every day and that made me not only pretty lonely but scared. Even my agent didn’t know much about it, but was ridiculously understanding when I had to email him to say I wasn’t physically up to certain jobs at that time – ones with demanding physicality, long tours etc. He didn’t ask prying questions which I was grateful for because i didn’t want to talk about it. He just accepted I had something going on and needed to pull back until I got a hold of it.

After my diagnosis I was finally able to open up more about it. Suddenly I started to understand why and how I was feeling and moving the way I was. I wasn’t so shy about talking about it as well!

Before that I was afraid to tell colleagues about AS because I thought people would see weakness and decide I wasn’t up for the job. I was trying to do everything I could to show them i wasn’t anything other than a young, active woman they wanted to see, who was completely in control of herself. I’m laughing out loud as I write that by the way!

After I started opening up to my colleagues and friends everything had changed. Finally I had the help and support from those I was spending most of my time with, and they genuinely cared about my well being! I was so well looked after. They really tried to understand and I even found myself being congratulated on a daily basis for getting through it with what I had.

Looking back, I can see the change in my demeanour. I’ve relaxed and started to enjoy my life again. I stopped being so hard on myself and my body, stopped blaming myself for why I was now more physically limited. I started finding it easier to push through the fatigue and the pain and even found that dancing helped when coupled with a good half hour of severe stretching before and after – it was here that I found the wonder that is yoga.

I also learned that I needed a little more than the half hour physical warm up casts do together to get me ready for work, so I started walking, getting an extra half hour to stretch out the stiffness. This is still in my work routine to this day! I joined the gym and worked with a personal trainer to find an exercise regime that would build my strength and stamina whilst safely navigating my flare ups and back pain.

Then almost a year after my diagnosis I injected my first dose of Humira. This drug has changed my life and I’m incredibly lucky to have something that limits my pain and discomfort to the extent it does. To those who are waiting to start it or another biologic – I am with you! Be patient, it will be worth it.

Giving people a chance to understand something that I was attempting to learn how to live with was a turning point; Not only for my career but for dealing with AS as well.

Mental health is a strong concern with people in the arts, generally, as to have your work opened up to scrutiny and judgement can take it’s toll on your emotional and mental stability. I’m lucky to work with people who understand the need to support each other no matter what.

Fast forward four years to now, I’ve had an amazing, busy year and I’ve just finished 5 weeks of rehearsals followed by a 6 week long run playing Gretel in ‘Hansel and Gretel’ at the MAC in my home city of Belfast over Christmas. We did two shows a day with few days off (I had less days off because I was busy gigging with my band The Swingtime Starlets on the side) and it was the most physical, and rewarding thing I’ve ever been a part of. I was looked after every step of the way by the incomparable cast, crew and entire staff involved in the production and the building.
Being able to do the job I grew up dreaming about without AS being the forefront of my mind is something I’ll never take for granted. And yes, I can hear you asking – I did have to do a lot of dancing in ‘Hansel and Gretel’ and guess what… I NAILED it!

Rosie is a rising star, actress from Belfast. You could see (or hear) her in CBBC’s Pablo series, Belfast Lyric Theatre and the most recently MAC Theatre. She’s also a part of the ‘retro’ trio The Swingtime Starlets. All that while living with ankylosing spondylitis. Look out for Rosie! She may be coming to the theatre near you soon!

The post The backstage of looking healthy: acting with ankylosing spondylitis appeared first on ASone.

My childhood was a difficult time for me, whilst living with being deaf and being sent to a special needs school ( unnecessarily I might add! ), I had no speech therapy and didn’t get taught to sign or read, and left school with very little qualifications. The school I was sent to let me down badly, I thought I could achieve so much more. My home life was far from happy for me, my father physically and mentally abused me leaving me black and blue with bruises from top to bottom! My confidence as a child growing dropped to the floor and that’s where it stayed for years! Not only did I have the struggles of school life but abuse at home was more than any child living in an isolated world could take.

When I was 19 years old I met my partner and one year after that meeting I decided to start a new life and moved to Norfolk to be with him. We thought a fresh start was what we both needed and left behind Tunbridge Wells in Kent. We never looked back, he’s been my rock, my best friend and now my husband.

I currently work supporting adults with learning disabilities, I find work life hard as I can’t hear what’s going on around me, and so far my work colleagues haven’t been ever so supportive of my deafness, and it sometimes causes real problems in the work place. Once again my confidence drops, I feel they discriminate again me and don’t see me as an equal because of my disability.

Life has been a tough ride so far, after being diagnosed with ankylosing spondylitis in 2007 I was then told I had testicular cancer, after treatment and an operation I made a good recovery.

Being so young and not well I decided to get fit and join the gym, good choice I hear you say but it wasn’t that easy! No gym would allow me to register with them as I was high risk because of my ongoing back problems, they said to me get a doctors letter to say you’re fit and we’ll accept you! That’s where the next problem arose all 3 doctors I visited refused point blank as they said I was at risk of damaging my spine and could be un-repairable! Great!

Life stood still for a while until 2 years ago I discovered Zumba! So after investing my time and researching my possibilities I gave Zumba Gold a go as it’s low impact. I was hooked at the first session I attended with Dominique Houghton, she is an amazing instructor, and after 6 months she encouraged me to become an instructor! Let me tell you this was not in my thought process at all!! I decided why not? Let’s try it.

So I signed up to a Zumba course and was successful! I’m now running my own classes each week, my confidence is growing slowly but surely. I signed up for a Zumba gold course and again passed successfully and on my way to keeping fit with great people around me! It’s so much fun and I can honestly say I love it and much better than any gym experience! It’s taken 17 years to find what makes me truly happy! I eat, sleep and breath Zumba and can’t live without it! This has changed my life for the better there is no looking back, only what’s ahead and the opportunities it will bring me. I am thankful of all the support I have received and feel very lucky to have found my new Zumba family, I no longer feel alone my classes are growing all the time, I now offer individual private classes to clients who want them. Without such supportive instructors this wouldn’t have been possible, I am currently working on routines for my new classes as an Aqua Zumba instructor and have recently purchased waterproof covers for my hearing aids to make this possible.

My only regret is not finding Zumba 10 years ago, it’s changed my life for the better, I’m so happy providing a service for others to enjoy and making great friendships along the way! I am thinking of attending the Zumba convention in 2018! Everything looks much brighter these days!

Russ is a Zumba Instructor from Norfolk, he’s really passionate about this sport and staying fit while living with ankylosing spondylitis. He has overcame many obstacles in his life but never gave up until finding what really makes him happy.

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