I self-medicated with alcohol. It didn’t happen often, but it happened enough. I was in a lot of pain, I could barely move, and I wanted to be able to go out and spend time with people, like any other 19 – 20-year-old. Alcohol fixed that, if only for a few hours. Nothing hurt and I was in a great mood and if the magic juice took the pain away, why not drink more? Then comes the next day, the hangover, the gaps in the memory and of course all the usual pain and lack of mobility, only amplified more by the hangover.

I knew what I was doing, I knew it wasn’t the answer and I knew I had to stop.

And I did stop. However, one of the main things that made me stop was getting my diagnosis and on my drug trial. I had hope and there was a light at the end of the tunnel, instead of at the bottom of a bottle. The feeling of hopelessness can lead us down dark and dangerous paths, especially when they feel like the only ones available to us. From someone that did it, please drink responsibly, don’t use alcohol (or drugs) as a coping mechanism. It definitely creates more problems than you think it solves.

If I could give my younger self any advice it would be to turn to the people in your life that care about you. They love you and want to be there for you.

I still drink, but not to self-medicate. Sure I’ve still had messy moments (my friends can show you pictures), but the motivation behind my drinking now is to be sociable and enjoy myself with friends and family, rather than to block out the pain by getting black out drunk.

Thanks for reading : )

You can find Jack on his Instagram , his poetry Instagram and you can read more of his work on his own blog . 

Help and support

As Jack explains, realising you have a problem with alcohol is the first big step to getting help.

A good place to start looking for help is with your GP. Try to be accurate and honest about how much you drink and any problems it may be causing you. Your GP will be able to suggest different types of assessment and support options available to you.

You can also search for alcohol support services in your area by using this link.

Some other useful organisations you might want to contact include:

• Drinkline is the national alcohol helpline. If you’re worried about your own or someone else’s drinking, you can call this free helpline in complete confidence. Call 0300 123 1110 (weekdays 9am to 8pm, weekends 11am to 4pm).
• Alcoholics Anonymous (AA) is a free self-help group. Its “12 step” programme involves getting sober with the help of regular support groups.
• SMART Recovery groups help people decide whether they have a problem, build up their motivation to change, and offer a set of proven tools and techniques to support recovery.

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My Journey of axial SpA to Present Day

As an occupational therapist, I knew there was something wrong when I was not only having severe pain in my hands/joints but when I started to lose my hand strength, dexterity, and range of motion in one of my fingers. Out of the blue, in 2018, one of my joints in my hands swelled up and after being referred to an orthopedic hand surgeon, the only autoimmune disease that was brought up was rheumatoid arthritis but was dismissed. I was told I could try to see a rheumatologist, but it was unlikely one would see me because I was ‘healthy.’ Over the years, I suffered from chronic back pain with periods of joint pain in my hands, hips, knees. My chronic back pain was often linked to being overweight. After suffering for a few years, I lost 40 pounds, as if expecting a miracle, I thought my back pain would go away, but it did not.

I would still have periods of severe back pain that it was impossible to even bend over at the sink to brush my teeth.  A year later, in 2019 I got hit with a flare so bad that I could barely walk.

In 2019, I finally got a comprehensive blood panel, which showed I was HLA-B27 positive and got referred to a rheumatologist. What helped me was I had discovered a family history of ankylosing spondylitis. As a precaution due family genetics, the doctor ordered x-ray’s but expressed how they would most likely not show anything. To the doctor’s surprise, they found something on my x-ray’s and quickly ordered for me to get an MRI. What the MRI revealed was that I have had periods of inflammation for quite some time and my right sacroiliac joint had started to deteriorate.

Coping with the Diagnosis

At first, I would say there was some type of relief that I finally had a diagnosis and was not imagining all these symptoms that had been bothering me for a decade. Immediately after the relief, fear set in, what did this mean for me for the rest of my life? Something extremely disappointing is that there is not much research done around AS and women.

Having so many questions and not having all the answers you want can be frightening.

Finding a doctor that specializes in axial SpA and one that I trusted and worked well with was key. Having a doctor who truly understands axial SpA and always strives for their patients to achieve optimal results has truly allowed me to be on a journey to recovery instead of settling for what I think I can live with.

Due to the progression of my axial SpA, I was immediately started on biologics. This was a decision that I did not take lightly and was incredibly hard for me to accept. After sitting down with my doctor and looking at the MRI, there was no denying the results on my body with axial SpA going untreated and I was even more afraid of the damage that would incur if it continued to go untreated.

Ever since starting biologics, I can easily say that it was the best decision for myself, I got my life back. After suffering with chronic pain for so many years, I forgot what I was supposed to feel like. The change was indescribable, and I am truly grateful for modern science.

The Journey to Healing Mentally & Physically

Since my diagnosis in 2019, I have found ways to cope with my AS and will say that overall, it has made me a healthier version of myself. I was always a health-conscious person and exercised but after my diagnosis is when I really started to take it to the next level. I carefully curate my weekly meals, which involve hours of meal prepping on the weekends and truly being selective of what I put into my body. I really got the chance to tune into my body and see what foods made me feel worse or better. Using my love of cooking has been so helpful to modify recipes and ingredients. But of course, I still indulge myself, in moderation of course!

I have also set up a rigorous fitness routine that encompasses not only strength and endurance but flexibility and mindfulness. Before I got diagnosed with axial SpA, all I knew was that when I was moving my body was not hurting me, which motivated me to work out so much. But now, I can truly say I enjoy working out and having a true purpose to what I am doing.

With axial SpA, it is so important to maintain spinal flexibility, so that motivated me to incorporate yoga into my weekly fitness routine.

Being an Occupational Therapist with axial SpA

As an occupational therapist, I am constantly doing task analysis’, which comprises of me breaking down each step (of any activity) into much smaller steps. Breaking these tasks to smaller ones helps the therapist to find the breakdown that is affecting completing these tasks and coming up with a solution so that they can successfully participate in daily activities. These solutions work not only by modifying a task, but by curating exercise programs to work on strengthening and finding specific movements to carry out these tasks.

I am lucky to have this skill and can modify my own daily occupations. I constantly use my knowledge and experience as an occupational therapist to modify activities of daily living (and at 29 years old I sit in a chair everyday to put on my pants and socks to conserve and deal with morning stiffness in my back).  I have learned through my profession and life that you can do almost anything you set your mind too, there are always hundreds of ways to complete a task and finding what works best for you and your body is key.

In Conclusion

This is a journey that is new to me and it will have many chapters in the upcoming years. This is an ongoing battle and with anything else, I have my good days when I feel invincible and then there are days that the pain sneaks back up to remind me that it still exists. What I can take away from my experience so far with axial SpA, is that it has made me incredibly resilient in all areas of my life.

I am choosing to persevere and live my life to the fullest and try to do everything that I enjoy. There is not a day that I take for granted and I will continue to do what I truly love: spending time with friends and family, cooking, working out and traveling the world.

This blog was written by Diana, who you can follow on her Instagram

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My 8 year journey to diagnosis

When I was 19 years old, I picked up a heavy box awkwardly and injured my back. At the time I didn’t think it was anything to worry about and being young, just assumed I’d pulled my back and it would go eventually. How wrong I was…

The pain started to get gradually worse, to the point where it made me physically sick. I started to lose some function in my left leg and big toe; and it would give way, meaning that I would randomly fall over. My leg became increasingly numb but some of the pain seemed to get better the more I moved around.

I was later referred by my GP to an orthopaedic spine surgeon where they arranged for me to have an X-ray and an MRI covering the full spine, SI joint and hip. (I remember being in the machine for nearly an hour and a half listening to ‘Radio 1’s Big Weekend’!)

The results showed that I had herniated some discs in my lower back, had hip cam impingements, sacroiliitis, torn hip cartilage and bursitis.

Over the course of around 8 months, I had 3 sets of injections into my lower spine, SI joints and hips. On the last set of injections when I came round from the anaesthetic, the surgeon said to me that I had some inflammation around my SI joint. He wanted to refer me to a rheumatologist to rule out anything else.

I underwent blood tests, which came back normal and a physical examination. I was then sent for a Nuclear Bone Scan.

I received a call asking me to come back into the hospital, as they had found something on my scan. I still had active inflammation in and around my SI joints and I was told to take Ibuprofen and try swimming.

I left there feeling worried and not very supported, as I did not know what was going on or what was causing it.

Over the next few months, I had physio and hydrotherapy, which built up the power in my leg and toes, however my pain started to return as the injections wore off. I started developing groin and hip pain as well when walking, which used to make me cry with how much it hurt. I decided to take myself back to the GP who referred me to a rheumatologist at a local hospital.

It took around 12 weeks, but I managed to get an appointment where my treatment really started. I underwent investigations, scans and was started on different medications to see what worked. I also started to develop some gastro problems and was diagnosed with Irritable Bowel Syndrome.

It was not until I was 27 that I was asked by a consultant if I knew what was wrong with me. My answer at the time was ‘no’. People had always told me it could be AS or something related but I wasn’t 100% sure, as where it isn’t always clear on scans it can cause such a delay in diagnosis. I was told that as the damage and inflammation around my SI joint were only visible on MRIs and not X-Rays and where the degree of damage was low, they said I had non-radiographic axial SpA.

I was started on biologics, as I had tried several other medications and they had not worked. Since being on biologics I have found that my pain is more manageable. Don’t get me wrong, I still have times where I flare, but the amount of flares I have is lower than before I started them.

How lockdown helped me feel supported and accept my condition 

Before we were put into lockdown for the first time back in March 2020, I really struggled with believing that I had something wrong with me. I thought it was in my head and that other people with mechanical back pain experienced what I do, and that I was just weaker than others. This therefore really affected my anxiety.

It was not until I had to shield that I really started to want to raise awareness about axial spondyloarthritis. So many people I talk to have never heard of it before and the understanding of what was wrong with me was low.

It wasn’t just back pain or having ‘a bit of a bad back’.

People did not seem to understand why I was immunosuppressed either and I wanted to inform others about this.

During lockdown I started taking part in Pilates virtually with ‘Animated Physio’ to try to strengthen my core and also started walking around my garden to keep my stiffness at bay (I wore some of the grass out in the end!).

NASS have always been a great comfort to me, answering my concerns and offering me advice when I’ve felt helpless. I really wanted to be able to give back to them, so I decided to take part in the ‘Walk for Us’ challenge at the end of October 2020. I was able to walk 10k with my husband when we were able to get away to Cornwall for our holiday and raise some money for the charity by doing this. I felt so happy and proud that I managed to achieve it, as sometimes walking short distances can cause me a great deal of pain. I was also very grateful to all the people who donated to my challenge. I raised far more than I ever had expected to.

After the walk I really enjoyed being able to speak about AS and NASS, so I decided to create an Instagram page called @kirstysbackstory to try to educate people and also to connect with others who suffer from the same condition or other chronic illnesses. I have learnt so much from this platform about chronic conditions that I did not know before.

I have connected with some amazing, strong, kind and supportive people who have been there for me throughout.

These people have also helped me to feel confident in myself. I am quite a self-conscious person and find that on high pain days I sometimes need to use a stick or find I limp. This used to leave me feeling a bit embarrassed, but since having met so many other people with similar conditions and seeing how amazingly they deal with things and how supportive they are, this has made me feel much happier in myself.

I have even made some new friends who I know I will stay in contact with once we are through lockdown. One of my new friends also has AS and we speak on the phone regularly, offering each other support and advice. This has also led us to realise that we have lots of other things in common and I am very grateful for this.

My Pilates teacher Anna asked if I would like to take part in a live talk about my diagnosis on her Instagram. I really enjoyed doing this, and the support and kind words I received were amazing.

Having AS can feel extremely lonely at times, but it’s ironic really that at a time where we could feel especially isolated, I was able to feel much less alone because people understood what I was going through. That honestly meant the world to me and still does.

You can follow Kirsty on her Instagram page for some support and positivity! 

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I first came across coaching as I was reflecting on my work situation and my need for a change. Living with axial SpA (AS) had significantly changed my life and my perspective.  

Five years after my diagnosis, it became clear that a desk-based job was not suitable for me anymore. I tried working part time, rearranging my desk, taking regular breaks and going for walks. 

It just did not work for me anymore. Sitting in front of a computer all week made me feel bad physically and mentally.  

But it was hard to think about what else I could do. I found the idea of changing my career too big, risky and confusing. Thinking it through alone was difficult. So, I decided to work with a life coach.  

The coach asked me simple questions to help me analyse my current situation at work and my desire for change. Through each session I made progress, gathering information, and identifying easy practical tasks to get answers about a new career path.  

I found it useful that the coach didn’t advise me but instead guided me to reach my own answers and work out my own plan involving my own actions. This made me feel confident, reassured and in control.

I felt empowered and positive about my ability to both keep working and cope better with my axial SpA. 

As a result, I worked towards a Diploma in Personal Performance. I wanted to offer to people what I found through coaching.  

What is coaching?  

Coaching has, at its core, the aim of a complete life balance. A life coach helps you to reach a happier, more balanced life according to your own vision and values.  

Coaching supports you to unlock a situation and gives you the space to explore ways to move forward, to structure a plan and take action while being witnessed, listened to and supported. This is also the place to explore the practicalities of achieving a goal, putting things into context of your life circumstances.

I noticed the coaching sessions were particularly valuable to people during lockdown restriction, to keep a focus on their goals and how to get there.  

Coaching for the management of long term conditions.  

Living with a long term condition can mean regularly revising our way of living and potentially adapting to new circumstances.  

Our symptoms  can change, or worsen, even overnight. As a result, our daily routine, the way we organise our life has to change too but without any plan or instructions on what that change should look like. 

It can be a real burden to have to manage the condition, navigate the care pathway, and adapt your life.  

Self-management of axial SpA can include trying to manage fatigue and chronic pain, fitting in regular exercise and, looking after our mental health, to name a few. All that can be overwhelming.  And that’s why having someone neutral and supportive to talk to can make a big difference.  

A coach can help you to define what you want to do first to improve your life. They know how to really listen to people’s story and asks powerful questions in order to identify where the next step might be to manage symptoms.  

Regular sessions are useful to keep the momentum to implement these changes. You and the coach are both engaged into this mission to improve your quality of life in whatever way that you decide, as you are the expert in your life with a long term condition. The coach is the facilitator in the process, the catalyst to the changes you will make in your life.  

Dr Julie Vallortigara (PhD) is a Life Coach for people with long term conditions. She also ran a My AS My Life online session on coaching. You can watch it here and you can contact Julie on jvallortigara@hotmail.com 

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So if you’re young with AS, or just starting the AS journey – never think it’s the end of life as you know it – life with AS can be long and full and happy – here’s my story. 

When I got married in 1977 I was young and fit and healthy; working fulltime for a bank and running a couple of miles twice a week.  Six months later, I would crawl down the road, thinking I’ve only got to get to the next lamp post, I’ve only got to get to the next shop.  

I was in agony. My back would go into spasms so badly I could barely draw breath. It sounds awful, but I put clean underwear and tights on at night, because I knew I wouldn’t be able to reach my feet in the morning.  

I spent 18 months visiting my GP, going from, ‘Here have some pain killers and it will all go away’ to ‘There’s nothing wrong with your back – you just don’t like being married’.  

We moved house, and I was forced to move GP surgery – After a couple of visits my new GP, sat me down, and – I remember to this day – he said ‘There’s something wrong with your back, and I don’t know what it is. I can refer you to Gloucester Royal, but I don’t think they’ll know what it is. There’s an old retired GP living up the road, he’s a genius with backs, I would like you to go and see him.’  

On the third visit, this old GP told me he thought I had AS.  A referral to Bath Hospital quickly confirmed the diagnosis.  No one in my family had AS, but my mum had had sciatica for 15 years, 15 years of agony, of undiagnosed, untreated AS. 

Both of us were treated with NSAIDs and for us they worked. I took one tablet yesterday on that long walk, but I don’t often need them anymore.  Once I started to take NSAIDs regularly – AS for me at least settled down to a manageable condition.  

From onset to diagnosis was a difficult couple of years, very difficult, but once treated it is manageable, you can get on with your life. 

My spine is completely rigid to my neck, and my neck is stiff. I’ve probably got 50% of the normal range of movement.  My back is straight and my hip joints are still my own. I can’t run or do impact sports but I can walk and swim and swing my grandchildren around and sit on their beds and read their  bedtime stories (yes, during all this I had two children, both now around 40 and neither have any indication of AS).   

Until the COVID19 lockdown I’d spend one day a week on a voluntary gardening site, doing pretty long hard work.  Life is full and rich and I’m happy.  

In my twenties I thought I’d be in a wheelchair by 30, now, at 63 I’m a great deal stronger and fitter than many of my non-AS friends of similar age. 

So what would I suggest? 

GPs need to know about AS and get early diagnosis and referrals – NASS is working on that. 

If I’d done more exercise in my early AS years I might have more flexibility now, but I might not. 

I would recommend swimming to everyone – especially back-stroke. Personally, I think it’s hard exercise in cold water that is beneficial – it keeps your joints cool as you work out.  I’m an accountant now, I sit hunched over a computer for way too many hours, but back stroke is the antidote to hunching. I swim with short flippers and resistance gloves and when I get out of the pool I know I’ve worked every muscle in my body.  It builds good shoulder and neck muscles, and, if you’re young enough to still care – a very nice six pack. 

Join NASS, support NASS and when you’re in need, pick up the phone and call NASS – they are wonderful. 

Jean is NASS Member and supporter. You can read her story in our upcoming Membership magazine AS News and join thousands of others by becoming a Member today.

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I have thought about doing one for a while, but never thought anyone would like to read it. However, it’s got to a point where there are so many thoughts in my head, it’s about time I got some of them down. This isn’t going to be some sort of inspirational post where I tell you all that I’ve overcome my illness and now I’m thriving, I am unfortunately very much still struggling. This is a bit like those infuriating autobiographies that sports people write even though they’re only two years into a professional career (unless you’re Ben Stokes, he can do whatever he likes). This is for me to air some anger and frustration, and maybe let people know that they’re not the only ones struggling.

For anyone reading this who doesn’t know what axial SpA (AS) is, it is a form of inflammatory arthritis that attacks the spine, pelvis, heel, eyes, bowels, and a load of other things. If this sounds horrendous to you, then that’s because it is, and it doesn’t stop there. If the inflammation remains uninterrupted, it wears away at the tendon attachments that you find attached to bone, and the healing process results in these flexible tendon attachments being replaced by calcium deposits, and can eventually lead to fusion of the spine and sacroiliac joints. Sound bad?

Inflammation of the front part of the eye, called anterior uveitis, can badly affect your vision if left untreated, and inflammatory bowel disease, from what I’ve heard, is probably the worst of them all. Fortunately, not everyone gets all the symptoms and comorbidities, and an early diagnosis can help prevent these things happen or lessen their impact if they do. But even an early diagnosis may not bring back the life you had previously.

So where did it all start for me? I had tendon problems in my ankle and behind my knee in my early teens, but they could have just been injuries. I also had something called reactive arthritis when I was 15, which caused my knee and wrist to swell up as a result of my immune system’s whacky response to food poisoning. This came back the following summer, but seemingly without a trigger.

After this, groin and back pain followed when I was 17, but it was minor, and it didn’t stop me from playing back to back hockey games on a Saturday. I was in the gym 3 times a week, doing mostly cardio, playing a lot of hockey, and playing in the 1XI at my local cricket club. I had a summer job, and then off to university.

I was mostly fine at university, other than a weird moment of horrific back pain whilst dancing to S Club 7 at freshers’ ball, which resulted in me throwing up from the pain (and alcohol) and fainting.

It took me 5 years to get my answer to this and I’m not sure it’s the one I wanted.

In my first year of uni, I somehow managed to get into the 1XI of the uni cricket team, and it was probably the most fun I have ever had playing sport; I am still gutted that a shoulder injury stopped me doing this in my 2nd and 3rd year. I picked up hockey again in my 3rd year and loved it. As a 20-year-old, I was normal, active and sociable.

Even when my groin and back pain returned in 2017/18, I didn’t take any medication. I just thought I was weak, so saw multiple physios and kept exercising.

Eventually I got fit again as I graduated and started playing cricket again in June 2018. The next few months saw improvements in my strength and mobility. The odd flare up followed me, but a combination of gym, swimming and pilates got me to the end of 2018 in good shape. However, while back in Southampton visiting my girlfriend in February 2019, I woke up at 3am in agony. I didn’t feel anything the night before, the pain in my back was sudden and agonising. I spent about an hour writhing around on the floor before I had to wake up my poor girlfriend to ask where the painkillers were.

I struggled for another 3-4 days, before being put on naproxen, which immediately made me feel normal again. I haven’t been off drugs since this point.

The naproxen worked for a while, but just as I was moving to Didcot to start my new job, it got worse again. I had an MRI scan privately about a month before then, which showed some minor disc issues, which became the problem for a couple of months – another misdiagnosis to add to the list.

The pain got worse and worse as I exercised less and less, until one weekend the pain subsided and suddenly I had a very red eye. It was extremely painful, but thinking it was just an eye infection, I left it for a day.

It was only when I woke up and my vision was blurry that I rushed off to the eye hospital.

The eye doctor took one look at my medical history and questioned why no one had picked up on my back pain before. An afternoon of stinging eye drops and an eye injection where the anaesthetic didn’t work followed, and I was sent on my merry way with steroid eye drops.

However, my eye got worse later in the week, and I ended up spending 3 days and nights in hospital having hourly eye drops through the night (apologies to the nursing staff for having to put up with me, I was very tired). To top this all off, I was discharged the day before my birthday. I was completely drained, and the combination of severe inflammation and lack of sleep left me with a complete loss of appetite and incredible fatigue for the next week. Fortunately, my back pain subsided, and the cricket world cup was on. I was signed off work for an extra two weeks, so I had the pleasure of sitting in my parents’ living room watching cricket. It was heaven.

With axial SpA(AS), you know before you know.

Anyway, there I was, returning to my office job after 3 weeks off, life completely turned upside down, flashes and floaters in my eye from the trauma, and expected to go on living life as normal. It was surreal. Luckily, I only had to wait another month for a rheumatology appointment, where I was told what AS is. When someone explains what axial SpA (AS) is, all your symptoms start to make sense. Axial SpA (AS) symptoms get better with movement, which explained how in my 4^th year of university, I could go from being unable to put my socks on in the morning to running around a hockey pitch in the evening. It explains why 20 minutes of high intensity training on an exercise bike made me feel better, and why I felt rubbish in the mornings as well as after rest.

Fortunately, my medication was changed to a different anti-inflammatory quickly, and overnight the pain almost disappeared – it was life changing.

I started doing strength training again, albeit in very small steps, and swimming became even easier. I had some pain in my groin and neck/shoulders, but this was well managed with swimming and I was waking up pretty much pain free. I was put on an immunosuppressant in November 2019 in order to get more of the pain to subside, and to hopefully prevent the uveitis returning. I was struggling with fatigue for a month or so, and some stomach pain which turned out to be stress-related IBS, but the pain had almost vanished, so I was happy.

However, 2 weeks before Christmas I had a major flare up. I tried exercising through it with running and swimming, but this level of pain was horrendous, and I only just about made it through Christmas, with a combination of exercise and hot water bottles. To be honest, I am only marginally better now than I was in January. I’m probably fitter and stronger, but the pain is at a similar level and my mental health is worse. I came off the first immunosuppressant in March and moved onto a different one. These drugs are relatively new and have revolutionised the treatment of many different inflammatory conditions, but not everyone responds to them, including me. Well, when I say don’t work, they probably work a bit, but I still can’t run and struggle to lift things.

Lockdown was immensely tough. But, then again, it was rubbish for everyone, so I won’t say too much about it. Just please wear a mask. And wear the thing properly.

I am now 15 months into my diagnosis. Honestly, I feel worse than I did this time last year. I thought it would all be up from there. one of the first things I asked about at my first appointment was about playing sport. I was ecstatic when I was told that I still had a chance if the treatment worked. By October 2019, I thought I genuinely thought I would be able to feel relatively normal again. But right now, I feel further away from it than I think I ever have. Axial SpA is relentless, and when it gives you a good day, it will just as easily make the next few weeks hell.

I have tried swimming, yoga, strengthening, running, pilates, somatics, the Wim Hof method, and supplements. I even tried not drinking for two months. I have been on 4 different types of medication, and it is very hard to see the light at the end of the tunnel, even if my rheumatologist tells me it’s there. I was never the most confident person, but arthritis destroys any confidence and self-esteem I once had. Its debilitating. It weaves itself into every part of your life and tries to tear it apart.

I am better than when I was first diagnosed, but I am nowhere near where I want to be.

Maybe I just need to accept that this is my life now. Unfortunately, I hate being told what I can and can’t do, and it’s the sheer stubbornness within me that keeps me going. That, and the wonderful rheumatologists, the two physios that have helped me (thank you Dan and Rachel), Zoe Clark the osteopath who has been working with NASS during the pandemic, and Jamie Boder who has been helping me with yoga (I am practicing every day I promise!). I miss sport very much. It was somewhat bearable when no one else could play, as it meant they could join me in the misery. My love of cricket is inexplainable, as it is probably one of the worst games to play, especially when you pay to play game where you could end up spending you whole Saturday afternoon doing nothing. Its bonkers, but I love it and miss it.

Arthritis doesn’t get the coverage it should. I’m not asking for it to be prioritised above other illnesses, but some consideration would be nice. There are estimated to be over 10 million cases of arthritis in the UK, encompassing 100 different variations. Osteoarthritis, Rheumatoid Arthritis and Gout are the most common. Axial SpA (AS) affects roughly 220,000 people in the UK, but I sometimes wonder if people are being missed because no-one has ever heard of it. Its more common that Multiple Sclerosis and Parkinson’s combined.

One huge misconception about arthritis is that it only affects old people.

Two thirds of people with arthritis are under 65, and even people in their 20s are diagnosed with osteoarthritis. There are also 15000 children in the UK with arthritis. That’s 15000 children growing up in constant pain – it’s all they know. And yes, I know there are other children out there with disabilities which also need attention and funding for research, but that doesn’t mean arthritis doesn’t deserve it too. I’m not asking people to understand what this is like, how could you? It’s an invisible illness which can cause an unimaginable amount of pain. To others, I’m just the weirdo crying on the bus to work for no reason.

The advances in treatment and research over the last two decades gives hope, and the level of care I have had from the NHS is brilliant. NASS is doing some wonderful work in trying to get the delay to diagnosis from 8.5 years to 1 year and improve the level of care across the whole of the NHS through education and collaboration. There are some wonderful people out there helping, and the next few years could see great advances in treatment. I don’t know if there will be a cure, but obviously if there is one, hit me up. I just hope it’s not too late for me.

Mark is a mechanical design engineer at the Central Laser Facility, who loves cricket and supports West Ham. You can follow him on twitter here.

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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.

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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.

It signals an end to what has been an extremely challenging 4 months (5 by the time it ends) for the shielded. The advice is changing because the risk of catching the virus continues to fall but do you feel safe leaving the house on 1st August?

Mixed emotions

I was lucky enough to know the announcement was coming. So it gave me some time to process it. However, I still cried as I walked my dog listening to the announcement on the radio.

It was very mixed emotions.

It was the light at the end of the tunnel we so desperately needed but it also made you realise what a long road we still had to travel.

One doctor told me that it might be Christmas before it would be safe to hug my family again and March 2021 before a vaccine would be ready for widespread deployment. So August 2020, still feels very early.

What does it mean for me?

Personally, just because we are told we can go round other people’s gardens, it doesn’t mean I feel safe to do so. There is still an awful lot of anxiety in the community of us shielder’s and from my point of view, little has changed.

Yes, the risk of transmission may be considerably lower but there’s still no vaccine. Still no magic cure for me should I catch Covid19. It simply means that there is a bed, ventilator and medical professionals free for my treatment now.

Currently, I do two isolated dog walks per day, as my health allows. I have found them stressful enough, with cyclists and joggers brushing past me with no warning and seemingly little concern for the 2-meter rule. I feel a very long way off feeling safe enough to go into a shop or round a friend’s garden – what if I need to use the bathroom? How do you join in with a BBQ without sharing condiments and touching the same surfaces?

As a group of people, us shielders are extremely anxious and paranoid by this point. We’ve made far too many sacrifices to put ourselves at risk now. Especially when nothing has changed with regards to a vaccine or effective treatment.

My experience of shielding

Without question, shielding has been one of the most emotional experiences of my life.

I was unwell when lockdown kicked in and was receiving a lot of medical support. There was one week where we had 5 letters and phone calls cancelling appointments. One of those, I had waited 30 weeks for a pain management appointment for it to get cancelled a week before it was due. That was a low point. It was the moment where it really sunk in how medically unsupported I would be during this pandemic.

This is something that the country needs to remember as things get back to normal. Along with those that tragically lost people, we sacrificed the most, in order to make space for the sick through COVID.

There are a lot of people with chronic conditions that are now broken. So not only have we been in the most challenging situation but have lost the most in terms of support. I hope there’s a plan to ensure that the chronically ill and disabled get the support they now need. I fear I may be disappointed.

First in, last out

What people need to remember is that the shielded and high risk have book-ended lockdown in a way that others haven’t. At first where ‘underlying health conditions‘ was used daily to explain those that sadly died from the virus. Like some kind of reassurance to the general population.

And again now at the end of lockdown. It is harder for us shielding now. In March, everyone was in the same boat, in it together, rainbows in windows etc. Now, families are reuniting, social media full of photos of people at bbq’s and the beach and we’re still having to shelter in place.

I am having to listen to neighbours laughing and drinking in gardens with friends. Its torture. Soon, it will be friends having a beer at the pub, watching football and I’m still sitting at home in my garden. Some are not even that lucky to have a space outside this entire time.

It forces you to withdraw. Protect yourself from the pain of it all and that’s not good for your mental health and puts a strain on relationships. It drives a stake between the shielded and their families and a divide between the healthy and the sick.

Socially disadvantaged

Shielding was the first time I ever really felt socially disadvantaged by my health condition. And, as attitudes already appear to be changing with delivery drivers no longer leaving items on doorsteps and stepping back as one example, the next six weeks I fear are only going to be harder for us.

There was a small window of opportunity where the healthy could have experienced what it was like to be chronically ill or disabled. Appreciate what it’s like to not leave your house, go to work, get your own shopping or medicine. To be stuck on the schedule of a disease, not your own.

But just as our beaches are being left littered just months after the world celebrated the apparent boom of nature in the deserted streets, we threw the chance away. Reverted to type. As humans so often do.

So much sacrificed, so little gained

As the first ones to enter lockdown under the instruction of our doctors, we were called ‘scaremongerers’, ‘paranoid’, ‘over-reactors’ by our friends, family, work colleagues and trial by social media. As the world returns to normal and we’re left to turn out the lights on lockdown, what did we gain?

The majority of us spared our lives but at the cost of our long-term health, relationships, jobs and confidence. We didn’t just do it for us – we did it for those that enjoyed that last night in the pub before they closed even though they knew the risks. The neighbours who continued to have family over throughout lockdown. The businesses that refused to close because they claimed they were providing ‘essential supplies’ (I’m looking at you, The Range!).

Do you think at any point they thought who’s doctor, nurse, bed or appointment they were taking when they were being treated for COVID when their own actions, their lack of self-control, meant it could have been so easily avoided if they just sat at home?

One thing we certainly didn’t gain is any more respect, understanding or appreciation from the wider population. The very people we made space for in the hospitals. The big hitters in the media barely mentioned us, with Monday’s news eclipsed in less than 24hrs hours because the pubs reopening was a greater public interest, apparently.

It’s this that made the personal sacrifice to my health and millions of others so sickening. It’s also why I fear what we have to witness from our homes over the next few weeks will be equally as challenging.

Share your thoughts

How do you feel about the Government’s announcement? Will you be ending shielding? How has shielding been for you? Let us know in the comments below.

This guest blog was written by Joel for his website. Joel is an arthritis blogger, writer and advocate. You can find more of his blogs at https://joelvsarthritis.co.uk/ and follow him on Facebook, Instagram and Twitter on @joelvsarthritis

The post Guest Blog – As shielding comes to an end in England, do you feel safe? appeared first on ASone.

Although I had what might be described as a “textbook case”, the journey to diagnosis was far from smooth and full of opportunities to become lost in the system and trapped in no man’s land.

I wish to share with you some of my insights (from a clinicians perspective) and what this means for others who may be struggling to obtain a diagnosis- or to make sense of your own lengthy delay to diagnosis.

The start of it all

2017 was a one of those years. There was significant upheaval and quite a lot of stress and eventually it took its toll on the body and mind.

My symptoms began with a very gradual onset of lower back pain. It was so gradual that it took me a while to realise I had it. I noticed that it was particularly bad when I was sat or standing still. I was also extremely tired all the time!

Image 1 – Yawning at work!

Given what I knew about pain and the relationship to stress- I shrugged it off. “It will pass” I thought.

Weeks turned into months but for some reason the back pain still persisted. I was very active- which helped, but nothing I was doing would resolve the issue.

Image 2 – Despite being very active- I still couldn’t run from the pain

When it clicked

After a period of 8 months of lower back pain, I woke up one morning and my eye was red and painful. It was unusual. I thought that I had irritated my eye somehow but couldn’t think how.

By the third day- my eye had become sensitive to light and was painful whenever I focused on near objects.

Image 3 – red and painful eye.

“Oh no!” The cogs were turning. “I have Uveitis!”

A few moments passed.

“Oh no!” The penny dropped …… “I think I have AS!”

All of my symptoms now made sense. A few years prior, I had an episode of rib pain at night and almost 12 months of unexplained achilles tendon pain. Now I have had almost a year of unexplained and unrelenting lower back pain that isn’t improved (with any of my normal self-management strategies) and now I have Uveiitis!

The journey begins

After a swift trip to the walk in centre for my eye, I was referred for an emergency appointment the next day with the ophthalmologist doctor.

Image 4 – Opthalmologist assessment

As I am sat in the waiting room (with sunglasses on to shield my eyes from the painful glare of the lights) I notice a poster. The poster is from NASS.

The poster said “Do you have Uveitis?… Do you have back pain?….You may have AS”. Brilliant, I thought. I have my fingers crossed that the ophthalmologist will be aware of the link between my two core symptoms and make the necessary referral.

After I have my eye examined- I am told that I have Acute Anterior Uveitis.

“Have you had much lower back pain recently?” I am asked. “Yes- for almost a year.” I am pleased that I am being asked the right questions but for some reason it now looks as though she doesn’t know what to do or say next.

From my own perspective, I am very aware that she now needs to make the necessary referral for further tests- HLA B27 gene test and further imaging with MRI. But I can see that she is about to wrap up the visit. “This doesn’t make sense” I thought.

She goes on to explain what medication I need for my eye and that is it- No further action required.

I then ask the question very reluctantly as I don’t want to appear pushy.

“Do you think it might be a good idea to investigate the back pain and uveitis further?”.

Cross roads

It is in the moment that I become extremely aware of how the delay to diagnosis is so long.

Despite the opthalmologist doing a fantastic job of diagnosing my eye complaint and also considering reasons WHY I may have uveitis, it is clear she is not certain on what to do next when someone has hallmark symptoms of AxSpa.

Image 5 – one decision can take you a long way off the path

If I was not very aware myself of what needed to be done then I could have been lost in the ether at this point. Sent on my way with no explanation of why an active chiropractor has persistent back pain.

There is a difficult exchange between myself and the ophthalmologist on the importance of further investigations and it is decided that a letter be sent to my GP to recommend me for HLA B27 gene test.

Enter rheumatology

My blood tests are back. I am HLA B27 positive. A referral is made to rheumatology for strong suspicion of AxSpa.

I thought the initial consultation would be plain sailing. I have a history of; back pain made worse by inactivity, uveitis, chronic tendon problems and HLA B27 positive. “this is a no-brainer” I thought.

Despite this. I would describe my initial consultation with the rheumatologist as another “near miss”.

I sat down and described my history of symptoms. I looked back at a rather doubtful rheumatologist.

He checked my range of motion. “You have quite good range of motion” he said. We sit back down and I am expecting him to discharge me – no further action required.

“Have you had rib pain before” he asked.

“Yes a few years ago – it would wake me up at night which was a problem for a few months” I replied. Bingo! His face changed.

“Ok” he said “If you had not had rib pain – I would be doubtful that you have AS. Let’s get you booked in for an MRI”

I was rather confused as I thought that I had enough symptoms without the history of rib pain to warrant an MRI but clearly not.

Clarification at last

Image 6 – MRI gold standard imaging for axSpa

Around 18 months after my initial symptoms, I had my MRI results back. “Signs of sacroiliitis indicative of axial spondyloarthropathy”.

Wow. So, that’s it. I have Axial Spondyloarthropathy. There is now no doubt.

It was a double edged sword. I now had an explanation of my symptoms. I also now had an auto immune disease.

I am one of the lucky ones. 18 months to diagnosis is fast! It could have turned out very different.

What if I didn’t get uveitis?

What if the ophthalmologist never made the referral?

What if the rheumatologist felt I didn’t have enough symptoms to warrant an MRI?

What if my MRI came back negative?

This can happen to a lot of people which is why there are a lot of undiagnosed sufferers out there. Work needs to be done in terms of clinician and public awareness in order to get people the right diagnosis and the right type of treatment (which is a different challenge all together!)

Thanks for reading.

Shane Derbyshire is a Norwich Chiropractor living with Axial SpA. Shane has more information on his blog on how to manage the condition and other back pain related issues. If you live local to Norfolk – then give Shane a call and book a consultation for expert advice and treatment. 

If you have any further questions  you can get in contact via email – shane@fitmotionchiro.co.uk 

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