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.

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.

The post I knew the cure wasn’t at the bottom of a bottle, but that didn’t stop me from looking there appeared first on ASone.

My Journey of axial SpA to Present Day

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

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

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

Coping with the Diagnosis

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

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

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

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

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

The Journey to Healing Mentally & Physically

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

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

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

Being an Occupational Therapist with axial SpA

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

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

In Conclusion

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

My 8 year journey to diagnosis

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

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

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

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

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

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

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

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

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

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

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

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

How lockdown helped me feel supported and accept my condition 

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

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

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

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

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

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

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

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

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

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

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

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

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

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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).

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