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.

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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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).

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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 

The post How coaching could change the way you live 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

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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.

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.

A couple of years ago, whilst out running with a group of friends, I got chatting to one of the younger men in the group. I asked why he joined and what he hoped to achieve. The 25-year-old told me his story and to my surprise he had been diagnosed with ankylosing spondylitis about 6 months ago. He was advised to take up exercise, which he did a little of, but wanted to do more and get fitter in general.

I also live with axial SpA (AS) but I’m much older (just turned 47). Coincidently I found out about my axial SpA (AS) when I was the same age as him – so I shared my story with him. He was genuinely amazed and told me about ASone so I could share my story with some of the younger people living with axial SpA (AS) to give them some guidance and hope.

I was diagnosed with axial SpA (AS) in 1998. Back then I started to develop severe back pain, but doctors continually said that I was suffering from Sciatica. Different kinds of treatments and drugs didn’t make the pain go away. Eventually I visited a rheumatologist for tests which revealed I had a disease called ankylosing spondylitis. I had no idea what this meant and how it would affect me in the future.

Once diagnosed I spent 2 weeks in a hospital undertaking intensive physiotherapy. I felt a bit like a guinea pig: students were attending my physio sessions to learn more about the condition and how to treat it.

I felt lucky in a way that it’s not a disease that will kill me but given the opportunity it can make my life a severe painful misery. To be honest, occasionally this is the case!

One thing that does prevent it from getting worse and helps to control the pain is, believe it or not, regular exercise! It helps preventing my spine from fusing together, it keeps me flexible and helps to control the pain.

Back in my 20s, I didn’t move a lot and smoked about 30 cigarettes a day (which is advised to give up as this enhances the condition and it’s not good to smoke in general). Because of my diagnosis I had to change this lifestyle quite rapidly.

After the physiotherapy course I continued the healthier exercising regime, but the pain wasn’t going anywhere. I had more better days than before, but it still wasn’t enough. Some days I couldn’t even get up from a chair due to the pain being so extreme.

In 2010 I started to run a lot, cycle to work and joined a gym. Some were saying this must be a mid-life crisis, but this was my way of controlling the pain.

After some time of being more active, the pain started to be much less, but the stiffness was still there. I did notice that winter training had some great effects on my mobility and pain levels, it must have been the temperature that helped the joints. However, after I knocked out a 30k run one cold, Sunday morning, I couldn’t do anymore running for a week! The recovery took so long… That was a lesson on importance of pacing, which I learnt the hard way and as well that my body was hugely different compared to other runners.

In the next couple of years or so I increased my running. Mainly because I got a London Marathon place thanks to a charity and I managed to raise £10k. I hadn’t mentioned to anyone about my axial SpA (AS), I just got on with it and tried to continue as normal.

Now I’m addicted to running, cycling, fitness, yoga and gym. No one would notice that I live with axial SpA (AS), it’s not something I normally share. However, I thought about it and decided I should, as there are many other people around the world (we are talking millions!) who live with this life-long condition.

In 2017 I had the confidence to join a running club – Metros in Harrow, London – which I have to say was the best thing I have ever done for this condition and my fitness. With club’s regular meet ups and my own running sessions I was getting around 50-70 km a week!

You would assume I was doing really well and I wish that was the case. The truth is I was still in pain most of days. It’s quite normal for me to suffer after a long and fast run, and then recover for couple of days before I can come back to my training.

My motivation when I wrote this original article was to be able to keep running as much as I did then. I really want to run 2000 km in total that year, sadly that didn’t happen and only clocked up 1806, I fell short again in 2019, But thanks to the lock-down of 2020 I have already managed to run 2158km to date. Sadly though as I write this I’m injured due to tearing my left calf so I have been out for 3 weeks with another 2-3 to go before I continue on my new target 2020 MILES.

Some of this year’s achievements are:

In March, after seriously considering running a marathon again I took on a hilly 20 mile race which I completed in 2hr 30mins but by half way I started to get horrible pains in the glutes which then run down to my calves, which happened to be the same horrendous pain for many years when I drive long distance. I remember clearly wanting to give up so many times and stopped to walk before pushing on once again. I obviously collapsed in a heap at the end holding my lower butt cheeks (a beautiful sight no doubt). Thus totally reminding me that running this distance isn’t my thing and it’s not worth the pain or punishment it causes.

Back in June I raised some money for a charity where I decided to run as much as I physically could during 1 week and clocked up 132km – which included 5 half marathons – Of course I was dead on my knees by the time I finished the last run.

PBs wise – since the Feb 18 post I have done quite a few – I broke my Half Marathon PB by over 3 mins 1hr.27, 10k broken by about 2 min and now 38.56 after years and years of trying to get under 40. Then there is the 5k in 18.21 which was about 30 secs quicker than previous.

There have also been plenty of track and field events also as my running club takes part in a Vets League – so I broke a record in the High Jump for my age Group for my club, funny as I had never done before and took to it quite naturally. I went on to win an award for taking part in the most events (3000, 1500m, 800m, 400m, 100m, Javelin, Hammer, Long Jump, High Jump, Triple Jump Sadly I didn’t win any over the 4 separate events) and scored highest out of all that took part in our club and was also awarded another award for services and motivation to the club and members, which was a total surprise.

You can probably tell that I am someone that will do anything no matter what and I don’t let axial SpA (AS) dictate what I can and can’t do. I’m in control (most of the time).

However, it’s not all about the competition, awards and beating the records even though they are very motivating for me. The large part of it is that I just want to stay fit and not endure the pain when I’m not exercising.

And trust me after all these years the pain is still there, but I can’t imagine what it would be like if I didn’t have running, exercise or my running friends around me to continually motivate and inspire me.

I appreciate that everyone is different, and axial SpA (AS) comes in many forms and affects people differently, but if I could give some advice to anyone who has been living with axial SpA (AS) or just have been diagnosed, I’d say, don’t give in!

Keep moving and believe you can do anything you want to do. These are my methods of being in control of axial SpA (AS) (as much as I can!). I know many people who do the same as me, but I also know it might not be for everyone. Find your way and intensity, but again, don’t give in and keep moving!

20 years ago, I was a young guy but unfit, lazy and heavier than I am now. Who knew that axial SpA (AS) would be a blessing in disguise. It turned out to be my driver and motivation to keep strong and fit.

I hope that by writing this article I will be able to inspire anyone with axial SpA (AS). I want to let you know that you’re not alone, you can find the support you need out there, but the only way to control your axial SpA (AS) is to do something about it yourself! Don’t let it get the better of you and keep moving!

Axial SpA (AS) hasn’t beaten me, it made me fitter and stronger, let it do the same for you!

Marcus is a serious businessman and a serious runner. He battles his axial SpA (AS) by being very active and not giving in to his condition. You can follow his progress on Instagram.

The post Axial Spondyloarthritis did not beat me, it made me stronger and fitter! – Update! appeared first on ASone.

Why mornings with axial SpA (AS) can be difficult

Axial SpA (AS) is an inflammatory condition and the nature of inflammation means that periods of inactivity can feel worse. When keeping still for long periods of time, such as overnight, inflammation can cause increased pain and stiffness.

If you’re sleeping poorly because pain is waking you, this will cause fatigue and also make pain during the day more difficult to manage. Fatigue isn’t just feeling tired, it’s an overwhelming feeling of exhaustion. If you’re waking not feeling refreshed, it can be helpful to look at how to manage night pain to sleep better or how to manage fatigue generally.

When to speak to your doctor

If you’re experiencing a lot of pain and joint stiffness in the morning or your axial SpA (AS) generally feels poorly controlled, speak to your doctor about ways you can help manage your condition. It’s also important to speak to your doctor if you notice a sudden increase in your pain, particularly if it’s waking you at night.

Allow plenty of time

The best advice to make mornings easier, is to allow plenty of time in the mornings. Allow time for you to loosen up by doing some gentle exercises. It can be helpful to do these in bed before sitting up or after a warm shower when your muscles are warm and relaxed. Allowing more time can also help if you take painkillers or anti-inflammatories in the morning. Giving your medication time to take effect before starting your day can cause a noticeable improvement.

It’s really nice to take time over a warm drink and your breakfast in the morning. This can allow you to loosen up, have some relaxation time and mentally prepare for the day ahead.

Use heat

Heat can be incredibly helpful to ease pain and relax muscles. As mentioned earlier, you can also use heat to make exercises more beneficial. You can apply heat in a number of different ways:

• Electric blanket in bed (this is particularly helpful to use during lying exercises)
• A topical heat pad
• Heat rub/cream
• Hot shower/bath
• Hot water bottle wrapped in a towel

Morning exercises

Exercise and movement can help reduce joint stiffness, improve your mobility and ease pain. It’s natural that the movements you do in the morning may be slower and smaller than the movements you do during the day, so take your time with them and really listen to your body. This routine of lying exercises can be perfect in the mornings or some gentle exercises sat on the edge of the bed.

Walking in the morning is a perfect all round exercise, so if you have time to get out even for 10-minutes, try making a routine of it for around a week to see how it feels. It can also be a great way to start the day and prepare your mind.

Pain relief

There are lots of different painkillers and anti-inflammatories available, so speak to your doctor or pharmacist about your options. Discuss when you can take them, because some medications taken in the evening can reduce the symptoms you experience through the night and in the morning.

Preparation is key

Spending some time the day before to prepare for the next day can help make mornings easier, especially if you have an early start or a busy day planned. Have your morning medication and a drink beside the bed. Setting out your clothes and preparing your bag the day before saves any decision making while you’re still waking and loosening up.

If you can prepare a healthy breakfast ahead of time, this can make the morning easier and also give you energy to start the day. If you need to take lunch with you, preparing this the night before also removes something from the morning “to do list”. If you experience shoulder or upper back pain/stiffness in the mornings, fill the kettle the night before with the right amount of water so you don’t have to lift a heavy kettle while you’re still loosening up.

Improving your sleep

Good quality sleep is really essential, but lots of people with axial SpA (AS) find this difficult. You can read more about improving your sleep and reducing night pain in our previous blog post. (Link to night pain blog post) Some key things to consider are:

• Regular check ups with your doctor to ensure your axial SpA (AS) is well managed
• Discussing your medication with your doctor or pharmacist
• Managing stress
• Making your sleeping environment suitable by dimming lights, keeping it cool, using blackout blinds/curtains and removing any screens e.g. TV, games
• Keeping the same sleep/wake cycle (going to bed at the same time each night, getting up at the same time each day)
• Spending time outside or near a window with natural sunlight during the day
• Avoiding high energy exercise before bed, instead do gentle stretches or breathing exercises (do the higher energy exercise earlier in the day)

Managing fatigue

Fatigue is a common symptom of axial SpA (AS) and can have a huge impact on your life. It’s important to ensure your condition is as controlled as possible, but if you still experience fatigue it can be helpful to:

• Keep an activity diary to help pace your activities
• Prioritise tasks and breaker larger tasks into smaller chunks
• Schedule in rest breaks
• Ask your doctor or physiotherapist about an exercise plan to gradually increase your fitness and stamina without aggravating your fatigue
• Eat a well-balanced diet, plan your meals and speak to a nutritionist for help if needed
• Ask for help from friends/family and your medical team

You can read more about managing fatigue in our previous blog post. You can also download our Guide to Fatigue here.

Mental health

It’s really important to actively look after your mental health, particularly when living with a long-term condition. Some people find mornings more difficult because of increased pain/stiffness, so it’s really important to allow plenty of time in the morning. When using his time for stretches to loosen up, you can also reflect on the day ahead and prepare emotionally.

To help with pacing, you can look at the day’s schedule/tasks and then prioritise what is most important. This will allow you to focus on one thing at time and also manage your energy well.

Some simple activities you can do in the morning include:

• A cuppa’ with loved ones
• Journalling or reflecting (you can use prompts such as “what am I most looking forward to today?” and “who needs me at my best today?”)
• Using a ‘joy jar’
• Listening to music
• Relaxation or mindfulness techniques
• Planning your schedule for the day
• Taking time to note down three things you’re grateful for today (you can also do this in the evening)

A ‘joy jar’ is a jar where you can place notes of all the activities and things you’re looking forward to doing, even if they are far off in the distance, as you think of them. You then do each activity when you’re able to and gradually empty the jar (although you can keep adding ideas as you think of them, so you always have things to look forward to).

The important thing is to experiment to find what works best for you to get your morning off to the right start.

Managing axial SpA (AS) well

Some keys ways you can manage your condition to make mornings a little easier include:

• Exercising regularly
• Stretching in the mornings
• Including some strengthening exercises in your daily routine to improve your muscle strength and general stamina
• Regular check ups with your doctor or physiotherapist
• Taking your medication correctly and at the right times/doses

Summary

• Mornings can be difficult due to pain, stiffness, fatigue and mentally preparing for the day ahead
• Some preparation the day before and altering routines can make mornings a lot easier
• Speaking to your health team can ensure you’re managing your condition as well as possible (including medication, exercise routine and mental health)
• There is lots you can do to improve your sleep and help manage fatigue

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

Zoë is available on the Helpline each day, 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 Making mornings easier – living with axial SpA (AS) appeared first on ASone.