Something else that’s taken me time to process, is using mobility aids and joint supports. Firstly, I’ve had to deal with my own internalised ableism and probably a touch of denial. Am I sick or ‘disabled enough’ to use these things? At what point should I use them and when should I push through the pain or fatigue? Am I giving in to my AS by using these devices? The ‘lightbulb moment’ for me was when a friend, who also has AS, described using an aid as just the same as anyone using a dishwasher. We use a dishwasher to save us time and energy, so why not use an aid to save us pain and fatigue? It sounded so simple, yet it really triggered a shift in my mindset.

I’m not working against my AS. I’m living with it.

I now use a walking stick when I’m out and about most days. I bought one that is lightweight and folds up, so that I could keep it in my bag and only use it when the pain got too bad. However, since trying it out I found that using the stick meant that I could do a lot more within my pain and energy limits. It seems obvious, but to me it was a revelation!

Before using a stick, my AS was generally an ‘invisible disability’. Most people couldn’t tell I had it from glancing at me, unless they noticed how frequently I change position when sitting, how much I need to sit rather than stand and the occasional wince on my face if I was in pain. To the stranger on the street, I was a regular twenty-something. With my stick, I find it easier to find a seat on public transport or (pre-covid!) I’d get support when queuing at the airport checks.

I’m really interested in the social model of disability, which emphasises that people are disabled by the barriers in society.

For example, a gig where I have to stand for hours would be inaccessible to me but having seating available removes that barrier. Using my mobility aid is freeing and reduces the challenges that I face, allowing me to do more of the things I need or want to do. I bought a stick which folds out into a seat so that, as the pandemic situation improves, I can enjoy visiting galleries and museums more. I’m acutely aware of how little seating most museums and galleries provide, so being able to fold out my own seat as and when I need it will allow me to visit these places and experience less pain during or afterwards.

Now, unfortunately, it’s not a guarantee and it’s not all positive (I certainly don’t want to go into the realm of toxic positivity!).

There will always be things that I can’t do because of my AS, but I will continually strive to accept this, even as it changes over the years. I can’t say it will be easy, but it’s all I can do. I do still have times, despite my stubbornness, where I have to ask for assistance, but the more I do it, the easier it’s becoming. I have experienced negative comments and rude stares, I presume because people are trying to work out why I need a stick. I have had some awkward conversations where well-meaning strangers have looked worried and asked what’s wrong – assuming I sprained an ankle or have a temporary injury. The first time this happened, I was taken aback and eventually mumbled something about “oh, er, I have a chronic illness…” and it was all a bit weird. Nowadays I have some fun replies ready, like “injured myself while lion taming”, “I’m an ex-pro crocodile wrestler” or the simple but intriguing, “it’s classified”. That last one is courtesy of WheelerDax.

In all seriousness, though, I feel that the more I talk about my AS, my mobility aids and disability in general, the more I will encourage people to be understanding and empathetic to other people.

The more I talk about it, the less self-conscious I feel. I have met lots of disabled people through my social media posts about my experiences and I feel less alone.

I know that in the future I may need different aids and that everyone is different with how or if their AS progresses. I want to use this blog series to meet other people with axial SpA, hear their experiences, get their recommendations and advice. Ultimately, I want to help support other people with axial SpA who may be at a different stage of their condition or their life.

I want these articles to be passed on to people without health conditions and non-disabled people to give them insight, to encourage compassion and to show that axial SpA is not “just a bit of back pain”.

So, if you would like to share your experiences, I’d love to hear from you. You can email zoe@nass.co.uk and we can have a chat!

Zoë Clark is our Senior Self-Management Programme Officer and leads My AS, My Life and our Supported Self-Management Programme. Find out about our upcoming Facebook Live sessions.

The post When the invisible becomes visible appeared first on ASone.

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

The post An Occupational Therapists Journey with axial SpA appeared first on ASone.

Looking back on it, it seems amazing to me that it took several years after my diagnosis of axial spondyloarthritis for me to realised that the word “disabled” applied to me. Even though I was in pain and fatigue every day, even though I sometimes needed a crutch to walk and sometimes had flareups where I couldn’t walk at all, it literally never even occurred to me that I had a medical disability. No doctor had ever told me I had a disability, and I used to think the term was reserved exclusively for people whose disabilities were visible and obvious, like wheelchair users.

It’s important to say that I mean strictly in a technical and legal sense. I don’t consider myself as less able to achieve my life goals (it just might take me a lot longer than others, or I might have to change my goals), and I think it’s right that people with AS do not consider themselves as less able.

But when it comes to talking to your employer about AS, one of the biggest things that helped me was to realise that AS is a medical disability. This is important because it gives you rights under the Equality Act. It is against the law for an employer to discriminate against you because of your AS, and they have a responsibility to make reasonable adjustments to support you.

Here are some more tips that I wish I knew earlier:

• Become comfortable with saying things like “I have pain every day”, “I have a disability” or whatever phrases you need to say to communicate what you really feel like on a bad day at work. Say them out loud, just to yourself to begin with.

• Read the NASS Guide called “Managing my axial SpA (AS) at work”. It includes some great information about your rights under the Equality Act.

• While you’re there, get a copy of the “NASS Guide for Employers”. Ideally, get a physical copy (you can ask NASS to send you one). Having a physical publication from an organisation like NASS is incredibly helpful. It makes AS a real thing, a real medical condition, backed by medical science and research, not just words that you’re saying. For me, it relieved a lot of the stress and worry about not being believed or taken seriously. It’s also a subtle way to remind your employer that you have rights under the Equality Act without you having to actually say so, which can be awkward to bring up in conversation without sounding confrontational.

• Give the NASS Guide for Employers to your line manager or HR manager, and ask for a meeting after they’ve had a few days to read it. Ideally, if it’s possible to arrange a meeting on short notice (on the same day), take this meeting on a good day, when you’re feeling positive and more able to communicate your thoughts and feelings.

• Frame the purpose of this meeting in a positive way, by explaining that you are approaching them in order to make you more productive, more engaged and more efficient at your work, because you want to help yourself and the business succeed. Don’t frame it in a negative or confrontational way.

• Make the argument that if you can get a better chair, a standing desk, more flexible hours, extra breaks to rest, ergonomic equipment, a change in role, a different work environment, working from home, or whatever it is that you need that is reasonable, these things will make you happier at work, which actually makes you a better and more productive employee, which helps the business.

• The Equality Act gives your employer a duty to make reasonable adjustments to support you, but be mindful that the term “reasonable” is open to interpretation and can vary from employer to employer. A small company may have a limited budget, and may not be able to afford certain changes or be able to be as flexible as you want. On the other hand, for a large company, a fancy chair is an almost insignificant expense. Either way, make your employer look at these things as an investment – if they spend £800 on a great chair which makes you 5% more productive, it’s a no brainer – over time you will make the company back much more money than they spend!

• Your employer should be aware of schemes like Access To Work, which can provide funding for employers to purchase equipment such as ergonomic chairs and standing desks. If they aren’t, take the opportunity to do a little research and send it to your manager or HR department. This shows that you are being proactive, that you are coming from a desire to help both you and the business, and that you are willing to work with them to figure out solutions.

Finally, if you’re really struggling with work (or if you’re looking for work), it’s worth asking yourself what job would really make you happy. It’s much easier to motivate yourself to work when it’s something that you’re passionate about, even if it earns you less money. I ended up leaving my job to start my own company, so that I could create a 3D symptom diary app called Chronic Insights, because I realised that helping others who had chronic pain was what I was most passionate about, and that passion was the one thing that would make me get up and work, even on bad days.

James is a blogger, activist and app developer. You can find out more by visiting his website or by following him on Instagram 

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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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Naturally, the last year has demanded resilience and at times it can be difficult to maintain, particularly over such a long period of time. I want to bring together what we can learn from coping with the Covid-19 pandemic to relate to the skills we use to manage our axial SpA (AS) and manage the impact that it has on our lives.

Our natural resilience

Firstly, it’s important to recognise that this is a very stressful time and humans aren’t built to withstand chronic stress. As described in Anxiety UK’s video, humans cope well with short periods of stress and then periods of rest. To cope with stress long-term, we can increase our resilience through several different tools or strategies.

Same storm, different boats

Everyone with axial SpA (AS) is different, everyone’s condition is different and the circumstances we live in are different as well. This can be compared with how we experience the Covid-19 pandemic, with a quote from writer Damian Barr being particularly poignant “We are not all in the same boat. We are all in the same storm. Some of us are on super-yachts. Some have just the one oar.”. Disabled people and people at greater risk of Covid-19 have experienced this year differently to non-disabled people. We can recognise the unique challenges we face, while supporting ourselves and those around us.

Be kind to yourself

When talking about ‘resilience’, it’s easy to sound dismissive of the fact that coping with a long-term condition can be really hard. Self care is incredibly important and it’s essential to have a number of different techniques and tools that help you, because different things will help at different times. Ultimately, be kind to yourself.

Feeling worried or stressed

The first step to coping with worry, stress and negative feelings is to recognise and acknowledge them when they come up. These are completely natural emotions, but some practical tips to help manage them include:

• Have a list of people and organisations you can speak to if you need to.
• Keep a box of reminders of things you’re looking forward to and happier times in the past.
• Write your worries down, journaling.
• Take a look at our previous videos on emotional wellbeing.

What’s within your control?

Spend some time thinking about things that tend to cause you stress or overwhelm, that you’re able to influence. Write a list and then next to each thing, write all the things you can do to reduce the impact.

For example, frequently watching the news can make us feel more stressed and worried. While we need to be informed, we can limit how long we spend looking at the news and also change when we look. Instead of checking news and social media first thing in the morning, check it in your lunch break or later in the day. Try this for a week and see how it makes you feel.

What’s out of your control?

If anything comes up in your mind that you have absolutely no control over, write that on a separate list. On this list, in the second column you write all the things you can do to distract yourself if you’re feeling stressed or worried about things you can’t control. This could include:

• Hobbies, crafts, knitting etc.
• Listening to music.
• Reading, writing.
• Speaking to loved ones.
• TV, movies etc.
• Exercise, yoga, going for a walk.
• Breathing exercises, meditation.

Coping with uncertainty

Make it easier to cope with uncertainty with creative ways to look forward, but don’t put pressure on yourself to set a date for plans:

• Make a joy jar (as described in our previous video)
• Create a vision board of things you’re looking forward to.
• Talk to people regularly.

Social media holiday

If you find social media gets you down, take a regular ‘social media holiday’ to reduce overwhelm.

Communicate

Speaking to loved ones about how you’re feeling can help build you up. Even if someone can’t give you practical help, the emotional support will help you feel stronger. You may also be able to talk to colleagues, carers, professionals or charities. Look for local or online support groups, including NASS Branches. For a listening ear, the Samaritans are always there.

Remember how strong you are

Repeating the lyric “it’s always darkest just before the dawn” to myself helps me through nights when an axial SpA (AS) flare is keeping me awake. It may sound cheesy, but reminding yourself of how strong you are when you’re feeling at your weakest is incredibly powerful. We are a resilient bunch and it’s worth remembering that.

Zoë Clark is our Self Management Programme Officer. You may have seen her blog posts previously written for NASS and she spoke at the latest parliamentary meeting in January and appeared on Channel 5 News. 

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

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

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Don’t get zoomed out

With so many online events over recent months, more and more people are reporting feeling ‘zoomed out’ and fatigued. It’s wonderful to connect with people, but take care not to over-commit to events ahead of time. Try to pace the activities you sign up to so that you have time out in between. As always with a chronic illness and social events, remember that it’s okay to say no to an invite or ask to reschedule.

When you are on video calls or events, remember to move and stretch regularly either before, during or after the event (or preferably all three!)

Motion is lotion

I doubt there will ever be an article I write about helping yourself feel better with axial SpA (AS) where I don’t mention movement. In terms of self care, you can easily incorporate gentle movement regularly throughout your day to help limit the pain, stiffness and fatigue you may feel.

We’ve got lots of resources on My AS My Life giving simple movement routines, such as desk exercises, targeting specific areas and even a morning stretch routine. During the day, you can also sneak a few stretches in when you’re brushing your teeth or when you wait for the kettle to boil. You could even stick a note on the fridge so you do a stretch every time you go for a snack.

One positive to come from 2020 is the huge increase in online exercise classes. These are so much more accessible and many people find them less daunting than an in-person class. Search for your local NASS Branch to see if they’re doing online sessions with a Physiotherapist. The NASS Branches also offer an important chance to meet others with the same condition, chat with people who really understand and support each other.

Not-so-social media?

I’ll be the first to say how much social media has helped me over the recent months and years to stay connected with loved ones, meet new people and find support when managing my AS. However, it’s always helpful to occasionally take a step back and reassess the accounts you’re following to see if they leave you feeling more positive and supported, or if they have the opposite effect.

If you find social media draining your energy and mood, you can either unfollow some of the troublesome accounts or set some ground rules about how much time you spend online. Schedule in regular breaks and even an extended ‘social media holiday’ if it helps you feel grounded.

To connect with others on Christmas Day, 2020 will be the tenth year that comedian Sarah Millican is hosting #JoinIn on Twitter. Search for this hashtag and tweet with it to connect to other people online. The event gets bigger every year and I expect 2020 will be the biggest yet!

Relaxing activities

Have a brainstorming session and write down all the activities that you find relaxing. Keep a note and when planning your week ahead, carve out some time in the diary to ensure you take some ‘me time’. You can use these activities as rest periods during the day to help manage fatigue.

These activities could include:

• Having a hot bath with no interruptions
• Reading a book or magazine
• Breathing techniques or meditation
• Taking time to make a cup of tea/coffee and relax drinking it, rather than drinking it on the go
• Have a nap (unless you’re having difficulty sleeping at night, in which case we don’t recommend napping during the day)
• Look up recipes to try
• Look back on old photos of happy memories
• Put your favourite song on (and have a dance about if you want to!)
• Do some crafting/painting/writing/something creative
• Watching TV or a movie

Get creative with what you could do and share in the comments below.

Reducing overwhelm

This links in to my earlier advice about pacing activities and saying no if you need (or want) to, but reducing overwhelm can helped by planning ahead:

• Create lists of what’s coming up or what you have to do. If it’s out of your mind, it can be easier to switch off and relax
• Prioritise your tasks so you do the most important and urgent first
• Look at tasks that keep getting pushed down your ‘to do’ list – do they really need doing or could they wait until the New Year? If they’re still there months later, do they really need doing at all?
• Speak to friends, family or a professional if things are getting on top of you

It’s also important to ask for practical help from friends and family. For example, can they help with some of the Christmas shopping, wrapping presents, decorating the house or food preparation? Don’t feel stressed about making everything picture perfect, too. Do the carrots really need chopping perfectly and does the house need to be spotlessly clean? Try to take the pressure off yourself.

Looking forward…

2020 has been full of uncertainty and change, so it’s natural to not feel like you’re able to look forward as comfortably as you normally would. Here are my top tips to look forward to the future while embracing that things aren’t as predictable as they maybe once were:

• Create a joy jar – you place a note with things you’re looking forward to in the jar and commit to doing each activity/event at some point, but with no time pressure or constraints
• Create a vision board of all the things you’re looking forward to – the creative process can be fun in itself and it will then be something bright to look at on a darker day
• Create a list – by hand, on your computer, your phone or even on pinterest

… and looking back

The festive period and going into New Year is commonly a time to reflect on the year just ending and I expect 2020 will be no different. Many people have experienced huge challenges this year and are going through very tough times, so it may be a good time to write down all the positive things (no matter how small) that you can remember from this year. You could even do it with friends or family and each take it in turns sharing some things you’re thankful for.

Eat, drink and be (not too) merry!

Make sure to eat well and keep hydrated, because it helps your physical health and mental health too. You can read my previous advice about cooking with axial SpA (AS), including advice on meal prepping and planning ahead for busier times.

I don’t want to be the Grinch, but do pay attention to how much alcohol you drink over the Christmas period. Alcohol can lower your mood and while a little can make you feel sleepy, it actually disrupts your sleep and will lead to feeling more tired the next day. A little here and there is no harm, but it’s worth being mindful of.

Remember your medication

It may sound odd but taking the right medication at the right time is an act of self care! If you find it difficult to remember to take your axial SpA (AS) medication, set reminders in your phone, have a loved one act as a prompt, stick a note on the fridge or somewhere you’ll see regularly.

Get out and about

Of course depending on any local restrictions, get outside as frequently as you can. Colder, drizzly days can make us want to huddle up inside, but wrapping up in good clothing and going for a bracing walk can be really invigorating. It also makes being back in the warmth at home even more cozy! If you’re unable to go outdoors, sitting by the window and observing outside can be a nice break too.

Sleeping soundly

Sleep is so important for our health, but lots of people with axial SpA (AS) find it difficult. You can read my previous advice about managing night pain and sleeping well, but for more in depth advice I would also recommend “The Four Pillar Plan” by Dr Chatterjee (it may not be too late to add this to your list to Santa!).

The key points:

• Ensure you limit screen time in the hours before bed
• Try to limit caffeine in the afternoons/evenings
• Keep your bedroom cool, dark and free from distractions
• Do any strenuous activity earlier in the day and do more relaxing stretches before bed, for example our gentle 6pm stretch
• Try to get up at the same time each morning and go to bed at the same time each evening, to help the natural cycle of sleep/wake hormones our body produces

Talking helps

If you’re having difficulties and have no one to speak to, the Samaritans are a non-religious organisation who are free to talk to 24 hours a day, 365 days a year and it’s totally anonymous.

Mind also have a Helpline and lots of resources on their website.

Our Helpline is open 1000-1600 Monday-Friday on 020 8741 1515. For advice about managing your axial SpA (AS), you can email me directly on zoe@nass.co.uk. For this holiday period, our Helpline and office is closed from midday on 24^th December. We will reopen on Monday 4^th January. However, if you need a bit of help during that time you can send a message through Facebook and Sally will reply within 24 hours.

Zoë Clark is our Self Management Programme Officer. You may have seen her blog posts previously written for NASS and she spoke at the latest parliamentary meeting in January and appeared on Channel 5 News. 

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

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

The post Self Care Top Tips appeared first on ASone.

First thing’s first

Getting in and out of a car comfortably can be really difficult when your back is stiff and painful. Here’s a simple technique that may help:

1. To get in, open the door wide and stand with your back to sit seat
2. Slowly sit down onto the seat (making sure to duck your head if you need to)
3. Once seated, pivot on the spot to swing your legs into the footwell (rather than twisting your back)

To get out of the car, you simply do the same technique in reverse:

1. Pivot on the spot to swing your legs out of the car.
2. Plant your feet down, ensuring you have good support and balance.
3. Push up with your legs (while minding your head) to stand upright.

If you need support during this, holding onto the dashboard will give you more stability than the door. If you use a stick as a mobility aid, you can get that into a comfortable position and use that to push up as well. One of my patients taught me that once you’re sat on the car seat, you could slip a plastic bag underneath you, so that you pivot more easily on the seat. Remove the bag before driving, so that you’re safe and not moving around on the seat. You can use the bag when getting out of the car, too.

Explore different cars

It’s worth exploring different cars to find one that works well for you. When shopping around:

• Try getting in and out so check the height and door frame size.
• Adjust the seat to ensure that you can get it into a comfortable position.
• Try maneuvers on a test drive, such as reversing and parallel parking, to ensure that the car is comfortable and you have good visibility.
• If you have lots of hip or shoulder problems, automatic cars can be more comfortable.
• Look for power steering and braking.
• Parking sensors can help reduce the amount you need to turn.

Positioning yourself when driving

When sitting in the drivers seat, there are some simple adjustments you can make to ensure you’re supported.

• The seat should be close enough so that you have a slight relaxed bend in your knees when the peddle is fully depressed.
• The chair should be upright and supporting you, but without pushing your body forwards.
• You don’t want your arms overstretching, there should be a slight bend in your elbows when holding onto the steering wheel (but ensure the wheel isn’t too close so that it’s safe if the air bag goes off).
• The head restraint should be just behind your head, so that in the event of an accident it will stop your head moving backwards (but ensure that when you’re relaxed into the seat, it’s not pushing your head forwards).
• Adjust the wing mirrors and rear view mirror so that you can see them without having to twist or strain.

Positioning yourself when you’re a passenger

As a passenger, you have a little more flexibility with your seating position.

• The back of the seat should be upright, but without pushing you forwards.
• You can push your seat back so that you can either stretch out your legs or bend your knees to plant your feet on the floor.

Consider using cushions

You can place a small lumbar support cushion behind your low back, but ensure it has a strap around it to secure it to the seat. If you experience lots of rib or mid-back pain, try a foam cover for the seat belt to reduce the pressure across your chest. Passengers can also use a neck pillow to support their head and neck.

Heat can be soothing

Many people with axial SpA (AS) find heat really soothing. You can use your car journey to your advantage by investing in a heated seat cover that plugs into your car, allowing you to use heat safely while sitting still.

Does ice help you more?

Ice is a little trickier to apply on the move! To get around this, you could:

• Ice the area for 10-minutes before you drive.
• Take single-use ice packs or ice packs in a cooler if you’re going on a long journey. You can use these on rest breaks or when you reach your destination.

We don’t advise applying ice while you drive – both for the obvious safety risk, but also because you may accidentally leave it on a lot longer than you should. When applying ice, always wrap it in a towel to protect your skin from ice burns.

Take regular breaks

As always, the best thing to reduce axial SpA (AS) pain and stiffness building up is to move regularly. On longer car journeys, try to stop and walk around or stretch every 45-60 minutes. Sometimes your back can feel fine at the time, but then be very painful when you try to get out of the car, so planning in particular rest stops will reduce the likelihood of this happening. Regular rests are important for your concentration too, so it’s a win-win!

Exercises

All of these exercise suggestions should be comfortable. If you’re unsure if they’re suitable for you, chat with your doctor or physiotherapist before trying them.

As a passenger, you have more options to move around and exercise during a journey. Always ensure you keep your seatbelt on even when exercising. Try out these simple movements to reduce your joint stiffness, performing the movements slowly and gently:

1. Gently turn your head and neck to look to the left as far as comfortable, then repeat to the right.
2. While looking forwards, slowly tilt your left ear towards your left shoulder as far as comfortable, then repeat to the right.
3. Gently tilt your chin down towards your chest, then return to the centre.
4. If you don’t have any neck problems or nerve pain, slowly look up as far as comfortable, before returning to the centre.
5. Shrug your shoulders up towards your ears, then roll them forwards in circles three times.
6. Roll your shoulders backwards in circles three times, then relax your shoulders down.
7. As far as possible while keeping your seatbelt secure, you can gently twist your body to the left to get a slight twist in your spine. Then repeat to the right.
8. Push into the floor with your feet and shift your weight to the right side, to lift the left hip off the seat slightly. Repeat to the opposite side. This gently bends your low back and you can repeat it a few times slowly and rhythmically.
9. Gently arch your low back and then slump into the seat slightly. Return to a comfortable, upright seated position.
10. Stretch your legs out in front of you and place your feet together. Slowly let your hips relax, so your legs turn out and your knees fall away from each other. If this is comfortable, you can relax in this position for a few seconds.
11. Separate your feet to about hip width, then keep your feet on the floor as you relax your hips so your knees relax into each other.
12. Point the toes on your left foot towards the floor, while you point the toes on your right foot up towards you. Alternate these movements in a foot pumping action to loosen your ankles and boost your circulation.

The driver can do the exercises above when you stop for rest breaks (and the car engine is switched off). It can be helpful to do them in the passenger seat or back of the car, so you have more room in the foot well.

At rest breaks, walking is one of the best activities you can do to help loosen up before continuing the journey.

These standing exercises can also be really effective for loosening up your joints and stretching your muscles:

1. Stand with your feet hip width apart, then take your hands overhead to stretch your spine upwards.
2. Place your hands on your waist and gently move your hips side to side (this will loosen your back, as well as your hip joints).
3. Relax your arms beside you and gently roll your shoulders forwards and backwards.
4. If comfortable, you can look down towards the floor and then roll your spine down to reach towards the ground (only go as far as comfortable). You can hold this for one breath, before slowly coming back up to standing.
5. Standing comfortably, place the palms of your hands on your low back to provide some support. Then, gentle arch your back and lift for your chest bone towards the ceiling as far as comfortable, before returning to the starting position.
6. Stand beside the car, so you can use it for balance and support if you need. Step your right leg behind you and bend gently bend your left knee to do a lunge. You should feel a stretch in your right thigh and possibly both calf muscles. Repeat this on the other side.
7. Also using the car for support, stand on your left leg and swing your right leg forwards and backwards in a slow and controlled movement. Repeat on the other side.
8. Open the car door and place the heel of your right leg on the edge of the doorframe. Stand up nice and tall, holding onto the car for balance if needed. You should feel a gentle stretch at the back of your right thigh.

You can download these exercise sheets to take with you on journeys as reminders to keep moving regularly.

Things to be aware of

Remember, you shouldn’t drive if:

• Your flare is significantly affecting your mobility.
• Your flare is causing pain that will affect your concentration.
• Your medication is making you drowsy.
• You’re experiencing a lot of fatigue.

If you feel your axial SpA (AS) is affecting your ability to drive safely or comfortably, then do speak to your doctor. Your doctor or pharmacist can also discuss medication side effects if you’re experiencing drowsiness or difficulty concentrating.

It can also be helpful to speak to the charity Driving Mobility. This charity can help with car adaptations to keep you driving, for example fitting larger wing and rear view mirrors. The service is free if you’re referred by the DVLA and there is a small charge if you self-refer. Please remember to check with the DVLA when considering car adaptations, because they may need to be notified of your axial SpA (AS) before making these changes.

Visit our website to find out more about when you need to contact the DVLA and how to do so. You can also read Government advice about driving and axial SpA (AS).

The link above to our website also has information on the Motability Scheme and the Blue Badge Scheme. There is a lot of help and support out there to keep you driving safely and comfortably, so do get in touch if you would like any advice.

Summary

• Shop around for the best car for you and test it out thoroughly.
• Take care on getting in and out of the car comfortably.
• Use all the features in the car to adjust the seat, steering wheel and mirrors to set it up well.
• Take regular breaks to move, exercise or apply ice and heat.
• Speak to your doctor about driving for more specific advice.
• Check our website to understand whether the DVLA need to be informed of your axial SpA (AS).
• Look into the Motability Scheme, Blue Badge Scheme and the charity Driving Mobility.

Zoë Clark is our Self Management Programme Officer. You may have seen her blog posts previously written for NASS and she spoke at the latest parliamentary meeting in January and appeared on Channel 5 News. 

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

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

The post On the road again – driving comfortably with axial SpA (AS) appeared first on ASone.

It can’t be easy can it?

Well I wanted to know what it’s really like for them, so I asked my rock, my light, my love, my partner Mark. And this is what he said…

Jas: What were your first thoughts when I was diagnosed with ankylosing spondylitis?

Mark: Oh I don’t know darling, it was a long time ago.

(At this stage, I should point out that Mark is clearly not in the mood for this “interview.”)

M: I guess I was upset for you. I was angry that no one had worked it out before then, that it took so long.

(He’s referring to my nightmare year of diagnosis. You can read more about that here.)

M: And I guess a bit pitying for you.

(He notices my rather shocked, unimpressed expression before realising his mistake.)

M: Is that bad?

J: Yes Mark, that’s bad…I don’t wanna be pitied.

M: Okay sympathetic then, is that better?

J: Marginally. Does my illness impact our relationship in any way?

M: I mean, I have to hear you moaning about it. (He’s not wrong there, I do moan a lot when I’m flaring!) But no, I don’t think it really affects us as a couple, apart from when it puts you in grumpy moods, which is completely understandable. I don’t think we’ve ever let get in the way of our relationship. It doesn’t define you, so it shouldn’t define us.

J: Does my ankylosing spondylitis impact your daily life at all?

M: No, not really. Apart from having to find hiding places for the codiene that is!

(I should clarify here – I’ve had issues with codiene dependence in the past. I’m doing really well with it at the moment, but I still have the odd moment. So Mark becomes the guardian of the meds until I really need them.)

M: Other than that and rubbing deep heat into your back at various times of day, and making up hot water bottles every now and then, my day-to-day is the same as it’s always been. We’re quite lucky I suppose that your AS is under control at the moment, so we don’t need to go to the doctor’s every day, or go to hospital appointments every week. It could be a lot worse couldn’t it?

J: Do you ever get annoyed with me, because of the AS?

M: No of course not, that would really make me an ******** wouldn’t it! No, I mean I get a bit annoyed when you do things you shouldn’t do, like when you’re having a flare up and you still go to the gym and push yourself. Or if you lift something too heavy. But it’s up to you isn’t it? It’s your body and it’s your life, I can’t tell you not to do things, I can only say “I don’t think that’s a good idea, ’cause you’ll be hurting later”, and let you decide for yourself.

J: What’s the worst part about my ankylosing spondylitis?

M: When I can see you’re in pain, but I can’t do anything about it, I can’t make you better. That’s pretty hard to see.

J: How do you think my AS has changed me?

M: Um…I don’t know. It’s made you grumpier at times.

(Okay, so he keeps saying I’m grumpy, but I’ve got good reason for that sometimes you know? Especially when I’m having a really bad day with the AS like this.)

M: It’s made you a bit skeptical of the medical profession, but that’s okay, I can see why. But I’d say it mostly makes you wanna go out and do loads of stuff.

J: Do you think it’s changed you at all? Like your outlook or anything?

M: No, not really, I try not to think about it to be honest. We’ve just gotta get things done quicker than if we were younger and healthier I suppose. We’ve gotta see the world before I die and you end up in a wheelchair, don’t we?

J: Wow.

M: You wanted me to be honest!

J: Yeah, but ***** ‘ell mate! Okay, do you think you do too much around the house? Do you ever think I don’t do enough?

M: No I honestly don’t at all. I think we both share out the housework well, neither of us does more than the other. Like when you’re having a flare up, I’ll take on more ’cause physically it’s a struggle for you to do certain things. But then the week after, when you’re feeling better, you’ll do more. So it all balances out really. But I won’t lie, I’d always want you to do more, ’cause I don’t wanna do it! But I’m lazy ain’t I?

J: Yeah you are – joking! So mate, have you ever thought “**** this mate! I didn’t sign up for this!”?

M: No darling, I’ve never thought that. I’m not saying it’s easy at times by any means, like you’re a nightmare as it is without your AS added to the mix!

J: Rude.

M: Let me finish. But with all that, I’m so proud of you and the way you tackle whatever’s thrown at you. You don’t let the AS stop you from doing anything, so I never feel like I’m missing out on stuff. If anything, the AS makes you more determined to do things that prove you can do everything you want to. So no, I’ve never thought “**** this” and I can’t imagine I ever will. There’s more chance of you thinking it about me!

J: True dat! What would you say to someone who’s partner, long-term or short-term, has recently been diagnosed with AS?

M: Oh God. Well obviously it depends on how bad their condition is. You manage yours well, but that doesn’t mean others do, so they could be in a completely different situation to us. If their AS was the same level as yours, I’d say “No problem mate, you just gotta put up with some grumpiness and rub deep heat into her back at times!”

J: So you wouldn’t tell him to run a mile?

M: No, not at all. If you really want something to work, it’ll work.

J: Are you worried about what might happen in the future?

M: Nahhhh, I’ll probably be dead by the time your AS gets worse, IF it gets worse…Or at the very least, I’ll be too old to push your wheelchair, so you better get a battery powered one!

J: Nice!

M: Well you know me. I try not to worry about anything. What happens, happens. There’s no point in worrying about what hasn’t happened yet.

The wise words of Mr Mark there folks. Have I mentioned today what a good egg he is? I feel bad for him sometimes, of course I do, but in truth we’ve got it easier than most. My ankylosing spondylitis is thankfully very manageable at the moment, so there’s not a lot I can’t or won’t do. I might not be the same girl he met nearly 10 years ago, but we can blame that on life and time, not just the AS. Will my disease become a burden to both of us in years to come? Who knows, only time will tell. But right now, we’re just enjoying our life and time together as much as we can, doing all the things we want to do together! It’s often easy to forget the partner behind the patient, so let’s not! Love them and tell them that just by them being there makes everything that little bit more bearable. Laters Taters x

Laters Taters is a blog written by Jas and Mark to share their adventures and their journey with axial SpA (AS), check them out here! 

The post What it’s like to love someone with ankylosing spondylitis appeared first on ASone.