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.

Here are my top tips and you can check out our Facebook Live on the topic here.

Scheduled surgery?

If you have an operation scheduled, it’s essential to speak to your surgical team in advance about your axial SpA.

It can be useful to speak to your rheumatology team and consider asking:

• Do I need to delay any medication?
• Are there anti-inflammatories or pain relief medications that I can take, if needed?
• What do I need to make the surgeon and anaesthetist aware of before the operation? (This is particularly important if you have fusions in your spine or problems with your jaw)

The surgeon should also be able to give you an estimated time for recovery and when you can resume any immunosuppressant medications you may be taking (such as biologics).

On the day of the surgery, make sure you repeat to all the staff members that you have axial SpA and anything they need to be aware of (for example, you can’t lie flat or you have reduced neck movement). It can be useful to prepare A5 sheets with a few key bullet points of things staff need to be aware of. You can hand these to staff members pre- and post-surgery as a clear reminder.

Anaesthetics

Before your surgery you will have an appointment with your anaesthetist to discuss the surgery, your general health and any conditions that may affect the type of anaesthetic they use. It’s essential to inform them of your axial SpA, especially if you have any spinal fusions or jaw problems. Let your anaesthetist and surgeon know in advance if you can’t lie flat on your back.

If you will be having a nerve block or epidural, they may wish to do an MRI beforehand to ensure there are no fusions in the area.

If you will be having a general anaesthetic, the anaesthetist needs to check how much movement you have in your neck and jaw. If you have reduced movement in these areas, there is usually a way to work around this, but it’s important that the team know in advance.

Getting moving post-surgery

If your joints stiffen up quickly, it’s helpful to advise your surgical team and any ward staff in advance so that they can ensure they help you get up and moving as early as possible.

Your physiotherapist is the best person to ask for exercises you can do safely to help manage your axial SpA while recovering. For example, if you can’t put weight on your legs for a period of time, they may give you a series of seated exercises to reduce any stiffness or pain in your spine. Breathing exercises can be very helpful for encouraging movement in your ribs without having to stand or move too much.

Speak to your surgeon about what movements you can do following surgery and what you should avoid.

Injury or illness?

It can be more difficult to make changes following an injury or while you’re ill, compared to a scheduled operation, because generally these happen suddenly. Again, do speak to your rheumatology team or GP for advice on medication, exercises and any adaptations you may need in your home.

Around the home

Look around your home and make any adaptations that could be helpful. For example, if bending is difficult then ask someone to move essential items to a surface at waist height. Your doctor may be able to make a referral for someone to come into your home and advise on any changes that would be helpful. In some cases, they can also make the changes for you, such as adding handrails or loaning equipment.

There are lots of websites with equipment that make activities of your day-to-day life easier. For example, for washing you can use a shower stool and a long-handled sponge to reduce bending and to help manage fatigue.

Reducing joint pain and stiffness

One of the best things you can do is to get up and walk around for about five minutes in every hour. Little and often can go a long way to reducing joint pain and stiffness.

Similarly with exercises, do small amounts of exercise frequently is more achievable, but very effective. For example, you can do stretches in bed, while waiting for the kettle to boil or while cleaning your teeth.

If you’re spending more time sitting than usual, investing in a good pressure-relieving cushion can really reduce discomfort in your low back and sitting bones. Neck pillows can provide some support and comfort while sitting for longer periods.

Can you modify where you’re sleeping or add cushions to help you get a good night’s sleep? If you’re experiencing more pain at night, your doctor may advise on medication types or different timings that could help.

Don’t forget all the usual things that help you manage a flare up, such as heat pads, gentle massage, TENS machines and distraction techniques. It can be helpful to write down what usually helps you and store all the things you need in one place, creating a ‘flare toolkit’. When you’re in need, you know exactly where to go. It’s important to include contact details for your rheumatology team, so you can easily contact them for advice if you’re struggling.

Look after your emotional wellbeing

Speak to family and friends about what they can do to help support you during this time. Not only with tasks around the home, but also being able to speak with someone about how you’re feeling and get emotional support. It can be very difficult dealing with an injury or illness on top of axial SpA, so reach out for help if you need it. You can read more about your emotional wellbeing on My AS My Life and our emotional wellbeing page.

More information

For more information about managing your axial SpA, head to My AS My Life where we cover lots of topic including managing pain, exercise sessions, emotional wellbeing, and lots more.

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

The post Managing your axial SpA flares when you’re less active appeared first on ASone.

Start with a ‘win’

It can be helpful to start your day or week with a win. These could be a big win or a tiny win, it doesn’t matter. It’s all about focusing your attention on something positive.

Breathing exercise: diamond breathing

You may have heard of ‘belly breathing’ or ‘diaphragm breathing’. This is where you take deep breaths, filling your whole lungs and moving your belly. When feeling stressed or anxious, we often take shallow breaths and feel tense in our neck, shoulders and chest. Diamond breathing helps you take slower, deeper breaths:

• Create a diamond shape by putting your thumbs together and index fingers together
• Keeping this shape, place your hands on your belly with your belly button in the centre of this diamond
• As you breathe in, imagine you’re pushing the diamond in front of you, with your belly expanding like a balloon
• As you breathe out, imagine your belly flattens and the diamond sinks down towards your spine
• Keep your shoulders down and relaxed
• Repeat for a few breaths until you feel calm and your breathing has slowed comfortably

Breathing exercise: 4-7-8 breathing

Counting your breaths can be helpful to focus your mind and distract you from any pain or stressful thoughts. The 4-7-8 technique helps you breathe out for longer than you breathe in, which is calming and soothing. This exercise is particularly helpful if you’re finding it difficult to get to sleep.

• Breathe in for a count of four
• Hold that in-breath for a count of seven
• Breathe out for a count of eight
• Repeat times

If the counts seem too long, you can alter them to suit you. As long as you breathe out for longer than you breathe in, it will be a soothing exercise.

Upper body stretches

Watch the full session with Ali to try out some seated stretches for your neck, back, ribs and shoulders. If you’re unsure these stretches are suitable for you, check with your doctor or physiotherapist first.

Guided meditation

Ali finished by guiding us through a wonderful meditation (link to full video) and we received amazing comments about how the session helped everyone. For a taster to meditation, you can watch Ali’s taster video below:

More information

Ali Potter is a Health & Mindset Coach and Osteopath. Read more about Ali and her work on her website.

My AS My Life

We’re holding regular My AS My Life Facebook Lives to help you manage your axial SpA. Check out our upcoming sessions.

The post Relaxation and meditation for stress and pain 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 

The post Talking to your employer about AS – tips and advice appeared first on ASone.

Often, listening to stories from people going through the same thing as you can help enormously, which is why places like ASone are so valuable. I’ve gained so much strength and motivation from hearing other people’s stories, and I’d like to repay that kindness with some of my own. This one is about work, specifically about how to talk to your existing or prospective employer about AS.

In the early years of living with AS, talking about my chronic pain was scary. Not only was it difficult just to say the words “I’m in a lot of pain” out loud, it was difficult to admit to myself that AS wasn’t something I could just ignore and hope would just go away. It was hard to accept that I had limitations and challenges that my friends and colleagues didn’t, and that I didn’t know how to handle them, so I didn’t talk about it much.

I had a life to live, a career planned out, and I just didn’t want AS to change any of that, so I convinced myself that there was nothing to say.

On top of this, talking to my manager and HR about my condition seemed even more scary. Chronic pain is mostly invisible, so what if they didn’t believe me? Would I be able to explain that, even though I don’t look unwell or have any outward signs that I was in pain, I had started to really struggle with concentrating because of the fatigue and brain fog? What if they just didn’t get it?  Even worse, what if I was labelled as a complainer, a skiver, or dead weight?

Eventually I started having to cancel meetings with customers at the last minute due to flare-ups, which just multiplied the stress I was under and made my pain worse.

I had to start talking. And I’m so glad that I did.

Many things surprised me when I started opening up at work about what AS was, how it affected me and what I was feeling. It turned out that most people already knew that was struggling with something. I didn’t realise at the time, but when I talked to people I would often turn my whole upper body to look at people instead of turning my neck. This was a clue to people around me that something wasn’t right, especially my closest work friends, but they didn’t want to intrude by asking about it.

Once I became more comfortable with talking about it and explaining what AS was, I was blown away by the empathy and support I got from everyone I worked with, and how much my work life improved as a result.

With all the anxiety of wondering if they would believe me, I had forgotten that the managers at the company are human beings too, with their own life experiences of pain, illness and medical conditions, either directly or through friends and family members.

It even turned out that the CEO of the company also had AS and had just recently been suffering from recurring uveitis, which I hadn’t even realised!

I can only speak to my own experiences of course, and I’m aware that not every workplace is run by people who really care deeply about their employees. If you’re uncertain about how to approach talking to your current or prospective employer, how they may react, or worried that you will be treated negatively because of speaking out, look out for other work-related articles on ASone, including my next article about your rights and how to approach your employer.

Just remember that your disability is a strength, not a weakness. Few people have their characters tested like people who live with chronic pain. Living with AS teaches us to be more empathetic, more resilient, more self-aware, more humble, more forgiving and so many other things. Any good employer should see that as a great strength, and a valuable asset for any company.

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

The post What happened when I told my employer about my AS appeared first on ASone.

You know your body.

The first lesson I learnt? You know your body, so there is no better person to judge your health. While this may not be true at the start of your journey with axial SpA (AS), when it can be difficult to understand what’s going on, in time your knowledge of your body coupled with your healthcare team’s medical expertise will help you manage your axial SpA (AS) as best you can.

Managing a chronic health condition takes a lot of time.

This may seem obvious, but there are so many hidden things related to managing a long-term condition like axial SpA (AS). From keeping track of medical appointments, ordering medications and taking them as prescribed, to exercising daily to keep the pain and stiffness at bay. It really does affect all aspects of your life and takes so much time!

The effect on your mood and mental health cannot be understated.

Living with chronic pain can take a toll on your mood, but sometimes the way axial SpA (AS) affects your day-to-day activities can have an even bigger impact. Different people experience it in different ways, but for a stubborn person like myself I can struggle with my mood when my condition stops me doing things I want to do. It is really important to look after your emotional wellbeing to limit the impact it has.

You need a strong support network.

The people around you matter greatly and everyone finds support in different ways. Whether it’s family and friends, online groups or your local NASS Branch, having support is essential. I’ve met some of my best friends through axial SpA (AS) groups!

Medical appointments can be overwhelming.

Medical appointments can be overwhelming, particularly when you’ve recently received your diagnosis or you’re struggling to get your symptoms under control. Taking someone to your appointment (or sitting with you during a phone appointment) will give you added support and help take in all the information you discuss. Preparing a list of questions before the session is equally as important as writing down the key things discussed during. We’ve put together a guide to remote appointments and a handy worksheet to help you prepare.

I hope you’ve learnt some new things from my experiences. What have you learnt from having axial SpA (AS)?

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 What I’ve learnt from being a patient appeared first on ASone.

It’s important to remember that different things work for different people and when starting a new exercise regime, your rheumatology team can advise on what’s appropriate for you. One of the biggest things Andrew stressed is that there is no perfect exercise routine or amount, so experiment to find what works for you and be kind to yourself.

Getting started

When you’re starting a new exercise regime, make it as achievable as possible. Finding something you enjoy will make it much easier to start and, importantly, help you do it consistently over a long period of time.

• Are there different times of day that you prefer exercising?
• Do you prefer different types of exercise at different times of day?
• Do you prefer to exercise with others or on your own?
• Does music help motivate you?

As Andrew says, “the best exercise is the one you get done”.

Ideally you should aim for some moderate-intensity exercise. This means you get slightly out of breath, you’re a little sweaty and it will feel slightly challenging. This is a good way to judge the right level of workout and help you to increase the intensity over time safely.

Warming up

It’s important to warm up well before exercising to reduce the likelihood of injury.

• Some gentle cardio like cycling, cross trainer or brisk walking can help warm your muscles and joints.
• Try loosening your joints with swinging arm or leg movements and spinal twists.
• To help get your muscles fired up, try standing with your back against a wall and gently press into it. This will get the muscles warming up without moving your joints too much.

How much exercise should I do?

It depends on how much you currently do, how well your axial SpA (AS) is controlled and your general health. It’s worth checking with your healthcare team, but the general advice is 150 minutes of cardio exercise each week and strengthening exercises about three days a week.

Building up over time

To help you build up your exercise over time, think of FITT:

Frequency: exercising more often
Intensity: training a bit harder
Time: exercising for longer
Type: change the type of exercise

Make small increases and see how you feel in the days afterwards before increasing again.

Avoiding injury

The biggest advice for avoiding injury is to start with lower weights and repetitions, then increase this slowly over time as your strength and fitness increases.

Don’t worry about the ‘perfect posture’ too much, but be aware of your position and seek advice from a physiotherapist if you need to.

Injuries tend to happen when you’ve done too much too quickly, the weight is too heavy or you’re tired. If you feel tired, lighten the weight a little and concentrate on doing less repetitions really well.

Have a plan for flares

Flare ups of fatigue and pain are common in axial SpA (AS), even when your condition is generally well controlled. Sometimes it can physically stop you exercising, but it can also impact your motivation.

It’s important to keep moving when you’re flaring and there are some simple changes you can make if you want to weightlift during a flare:

• Do less repetitions of each exercise
• Use lower weights than usual
• Train different body areas to reduce strain on painful areas
• Do a shorter workout
• Try less impactful exercises e.g. exercise in water
• Exercise snacking: do small amounts of exercise throughout the day
• Have equipment at home: e.g. cables, bands, dumbbells, use a wall or the floor, or even tins of beans in a bag!
• Workout in water: use wrist/ankle weights, push a float into the water to add resistance or even hold a float between your knees for a good core workout

Positions to help weightlifting

As already mentioned, there is no perfect posture or alignment for anyone. Be guided by your healthcare professional’s advice and how things feel for you. There are some simple ways to adjust your position when lifting to find what’s right for you:

• Modify machines to find angles to suit you
• When using free weights, use a bench and alter your position/angle to make it more comfortable. For example, try leaning back to do a shoulder press, rather than sitting upright
• Dumbbells or cable machines can be easier than barbells. Sit on a bench when using these to keep yourself steady
• Use a hoodie/towel rolled up behind your head if you need extra neck and shoulder support

Squats

Before lifting, loosen up by doing small squats without weights or doing hip movements on machines.

If you find back squats uncomfortable on your spine, there are different types of squats that put pressure on your spine but still give your legs the same workout:

• Front squats: holding the bar on the front of your chest
• Goblet squats: holding a dumbbell or kettlebell in front of you
• Suitcase squats: holding weights in your hands

Use a deadlifting strap on a buffalo bar or safety bar if shoulder stiffness makes it difficult to hold the bar behind you.

Deadlifting

Commonly it can be difficult to deadlift with the bar on the ground, so try using bigger plates to raise the bar up or start with it on a bench.

Change your stance by having your feet wider or narrower to help with hip movements or discomfort.

Intense workouts

Sometimes you want an intense workout without putting pressure on your joints. There are a few ways to achieve this:

• Super sets: do back-to-back exercises where you work on one muscle group, followed by the opposite muscle group. For example, do bicep curls immediately followed by tricep pushdowns, or shoulder presses followed by lat raises
• Pre-fatigue muscles so you can use less weight. For example, do chest flies to tire the chest muscles before a bench press
• Drop sets: start with heaviest weight you can lift comfortably, then as your muscles fatigue move onto the next weight down and do as many reps as you can before dropping down again
• Lower the weight you’re using, but increase the repetitions
• Try High-Intensity Interval Training (HIIT)

Ideally the exercise should be difficult enough to challenge you, but not to the point where it’s really sore afterwards. As Andrew says, “stimulate, don’t annihilate. But remember that if it doesn’t challenge you, it doesn’t change you”.

Hand pain with holding weights

Top tips for reducing hand pain while holding weights:

• Use deadlifting grips or wrist straps that hook onto bar (these can be used for any exercise, not just deadlifting)
• Strengthen your hands: using hand putty, squishy ball, resistance tool…
• Compression gloves can be helpful

Remember…

There’s no perfect exercise, no ideal number of repetitions or intensity. It varies for each person and it varies depending on the day and how you’re feeling. Listen to your body and your healthcare professionals to find what’s right for you… most importantly, enjoy yourself!

Andrew is an osteopath, researcher and lecturer with a special interest in axial SpA (AS).

The post Weightlifting with axial SpA appeared first on ASone.

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

The post Living with axial SpA (AS) during a pandemic – what is ‘resilience’? appeared first on ASone.

Blogs

Be Inspired!

Check out some of our other blogs to get some ideas about how to format and style your piece, as well as exploring some of the topics we frequently look at. Try to use headings and excerpts to break up the text, as well as a short and sharp introduction to draw your reader in. A short bio is also useful to include at the end so you can start to build your reputation and gain a followership. Try to think of a snappy title and find interesting images that will draw the reader in.

Short and Sweet!

In general, the shorter the post, the more engagement it will get on social media and the more people will read it. Try to keep your blogs shorter than 800 words, this way, people will be able to really get to grips with your message and understand your story. If you can’t keep it short, consider splitting it into two parts if you feel like you are losing the heart and thrust of your piece. As well as this, it’s a good idea to think about the language you’re using, try to make it more conversational and informal. Try to write as if you’re talking to a friend who has no knowledge of axial SpA (AS).

Write for yourself!

The most important person to consider when you’re writing is yourself. Axial SpA (AS) is an ever-changing and personal condition that effects everyone differently, so be sure to work out why you want to write your blog and what thoughts and opinions you have. As long as you are honest and forthright, our audience will appreciate and understand your perspective.

Be Positive!

We know that living with axial SpA (AS) can be a real challenge, but it is important to try to find a positive angle for your blog. ASone’s audience are potentially vulnerable young people who may have been newly diagnosed and need reassurances and inspiration about the direction their life has taken. Of course, it is also important to be honest about your experiences with the condition so that people know what to expect, so it’s always a balancing act.

Find your style!

Whether you want to write an opinion piece, an informative article or share your journey with axial SpA (AS), it’s crucial you find your own style and pace. There are no specific rules or regulations when it comes to writing blogs, you just need to be yourself! Our guest blogs section is a great place to start if you want to have a look at the variety of posts we include on our site.

Vlogs

Blog or vlog?

First of all you need to work out whether a vlog is the best medium through which to share your content. A vlog is a great way to keep people’s attention if you are trying to communicate your more complex ideas and thoughts, or just want to share something longer. Some of the above tips such as being yourself, creating something positive and finding your own style will definitely also apply when vlogging.

Lights, camera, action!

First things first, you need to make sure you are recording in a well-lit room with a stable, good quality camera, these days, most smartphones will do the job. There is nothing more off-putting when watching something new than shaky, grainy footage! You don’t need to have all the expensive equipment in order to achieve this, a quick search will reveal a variety of options on how to vlog on a budget. It’s a good idea to film with the sun or the light source behind the camera, not with the sun behind you, as well as filming somewhere quiet so you don’t have to worry about any background noise. If you own one, you could use a selfie stick or mini tripod to steady your camera. Make sure you film in the right location, perhaps think about where you would take a zoom meeting or video conference. Please also check that any family photos or personal information that you wouldn’t want to share with the public isn’t visible in the video frame.

Practice!

Vlogging may be awkward and difficult if you are just starting out, so the best way to make sure you are as natural and as personable as possible is to practice in front of a camera before you start recording. You can even watch back your footage (as hard as it may be!) so you can see where you can improve. This will also help you strike the right tone, as you should make it as conversational and as informal as you can.

Editing

Once you have decided what you want to discuss and recorded your content, it’s important to create a slick edit to capture your viewers attention. Be sure to use, but not overuse transitions and to have an attractive intro and outro to keep people watching and ensure they remember your videos. There is a lot of a free software out there to help you and this guide is a great place to start. You can also incorporate music into your vlogs to give it that professional feel. Mixkit is a useful place to find stock music for you to use and edit. An enticing thumbnail is also important to attract people to your video.

Have fun!

The most important thing to remember is to have fun with your vlogging. Creating a video is an amazing way to connect with people all over the world and to share your personality with those you wouldn’t normally be able to.

If you have your own tips and tricks, please do let us know in the comments! 

The post ASone’s guide to creating blogs and vlogs appeared first on ASone.

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.