My Journey of axial SpA to Present Day

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

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

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

Coping with the Diagnosis

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

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

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

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

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

The Journey to Healing Mentally & Physically

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

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

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

Being an Occupational Therapist with axial SpA

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

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

In Conclusion

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

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

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

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

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

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

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

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

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

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

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

What is coaching?  

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

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

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

Coaching for the management of long term conditions.  

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

So what would I suggest? 

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

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

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

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

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

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

Our natural resilience

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

Same storm, different boats

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

Be kind to yourself

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

Feeling worried or stressed

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

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

What’s within your control?

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

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

What’s out of your control?

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

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

Coping with uncertainty

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

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

Social media holiday

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

Communicate

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

Remember how strong you are

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

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

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

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

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Don’t get zoomed out

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

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

Motion is lotion

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

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

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

Not-so-social media?

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

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

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

Relaxing activities

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

These activities could include:

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

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

Reducing overwhelm

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

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

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

Looking forward…

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

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

… and looking back

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

Eat, drink and be (not too) merry!

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

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

Remember your medication

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

Get out and about

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

Sleeping soundly

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

The key points:

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

Talking helps

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

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

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

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

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

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

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When you slip under the sheets to have sex for the first time with a new partner, it’s normal to have a thousand questions rush through your head. Questions about what they might like, what you like, and the inevitable intrusive thought about this week’s grocery shop.

Voicing these thoughts and communicating how your feeling is a key part of a healthy sexual experience. (Though, that grocery list doesn’t make for the most tantalising pillow talk: maybe keep that one to yourself.)

One conversation that is rarely planned-for, however, is the one where you reveal details of your chronic pain, illness, or disability to your partner. Dating is hard enough, now you have to think about how to tell a potential partner about your health?

You’ll probably wonder when the best time to have this discussion might be; do you broach it during foreplay? Before you reach the bedroom? Or maybe wait until they suggest a slightly over-zealous position and you have to explain that, unfortunately, your hips just don’t bend that way.

I was diagnosed with inflammatory arthritis, specifically Ankylosing Spondylitis, at eighteen years old, and developed it when I was thirteen.

The National Axial Spondyloarthritis Society (NASS) states the typical symptoms of axial spondyloarthritis (which includes ankylosing spondylitis) are; early morning stiffness and pain, chronic back pain and chronic fatigue. The organization also details that the condition can affect things like bone density, gastro health, and can cause pain in a wide range of joints. I’m very familiar with all these symptoms, and a common response people give when I divulge my diagnosis to anyone, regardless of context, is that I’m far too young to have such a disease.

It’s possible that I exude a “hips don’t lie” aura, or maybe — and this is more likely — the dating scene has not yet adjusted to the notion that young people can, and do, have arthritis.

Contrary to popular belief, the majority of people with axial spondyloarthritis including ankylosing spondylitis develop it in their teens or twenties. It most commonly causes severe pain in your lower back and hips, as well as widespread stiffness and chronic fatigue.

It is unreliable, which means I can switch between being a (somewhat) nimble, active date who is the perfect companion for an adventure, and the perfect candidate for someone who is really, really good at staying still and watching a significant amount of Netflix.

This occasionally means that, if I’m in a good period of health, my condition may not come into conversation, as I don’t present as significantly ill. If I am going through a more troublesome time with my pain, it may be one of the first things I feel as though I need to get out in the open.

Sex with arthritis can be daunting. With an unreliable and unstable condition, there’s no telling how you’re going to fare from night-to-night.

Having a significant flare-up of your condition can mean sex is virtually impossible, yet if your condition is unpredictable and unstable, you can be raring to go just a few hours after a flare-up. Having to explain this, and all the other intricacies of arthritis, to a new partner is a less-than-calming experience — but it’s worth it.

As an outspoken, sex-positive, outgoing disabled person, I would love to say that I don’t find it difficult to talk about my arthritis in relation to dating or sex … but that’s not the case. It can be tough, even for me.

Growing up in a world where you’re taught that disabled is equal to unattractive, undesirable, or burdensome leads to an internalized ableism that leads to many a hurdle in regards to loving yourself and ensuring self-confidence all around, and especially in your love life.

It’s understandable to not always feel sexy with a diagnosis of arthritis or any other chronic pain condition, as it is not befitting of what you’re taught to believe is sexy. With arthritis, or at least in my experience with arthritis, you’re stiff, you’re in pain, your mobility is infringed upon.

These are all things that you’re implicitly taught are unsexy. In fact, everything we’re socialised into believing as stereotypically ‘sexy’ does not factor in any notion of disability.

Therefore, it is unsurprising to not feel as though you belong in the Playboy mansion with joints as stiff as a board. But contrary to the abundance of ableist messaging we’re subject to, sexy and disabled aren’t mutually exclusive traits. That, however, is sometimes a little hard to remember whilst trying to navigate through the world of dating with arthritis.

This is where, in this case, if you’re the person living with arthritis, the concept of self-love comes in. Not the pop-culture style of self-love which demands you allow face masks and RomComs to make a significant dent in your bank account in the name of an ego-boost — but tricky, perception-altering self-love that sets you on the road to accepting yourself as both arthritic and sexy: sexy with a walking stick, sexy with a limp, and sexy when bending in any way but to grab some painkillers is a no-go.

If your partner has arthritis, it’s understandable if you don’t know all the facts, figures, and intricacies of what it means to live with arthritis: you don’t need to in order to be supportive. What you should do is be patient. Understand that all bodies are complicated and take a while to understand, and that is doubly true when being with someone with arthritis, or any disability.

There is an abundance of resources available that give details of the intricacies of sex and arthritis, from what positions are most advisable, to the medical impact of sex on arthritis.

However, the best way to support your partner with arthritis is to talk to them.

No leaflet, YouTube video, or blog post can tell you exactly how to support your partner’s specific needs. Everyone’s experience of arthritis, and with any disability, is different. No two people will have the same comments to make about what it is like to date or to have sex with arthritis, even if it is the same type. So open communication is key.

Sexiness and arthritis, have been regarded as mutually exclusive for a long time. This is partly because arthritis is typically associated with the elderly. But that’s just factually incorrect.

It’s also due to the fact that many chronic health conditions, many disabilities, are regarded as numerous things — sexy typically not being one of them. Even for us, as those living with disabilities.

Loving your arthritic body (or your partner’s arthritic body) into a state where sex is comfortable, fun, and supportive, can be done.

But it starts with mixing up a cocktail of open communication, respect, and the rejection of ableist views that see arthritic and sexy as antithetical. Not just for us, but for the people who desire us.

Bethany Dawson is a freelance journalist and blogger focusing on feminism, disability rights, and British politics. She’s currently working for a bachelor’s degree in Politics and Sociology and navigating the complexities of Westminster. Follow her on Twitter @bethanymrd for more, and check out BVisible for her work on invisible illnesses.

The post How to talk about your axial SpA (AS) before having sex with someone new appeared first on ASone.

I’ve tried to self manage my condition since I was diagnosed in 2014. However, my condition has worsened due to getting older. I suffer consistently with severe fatigue, sharp shooting pains & pins in both my legs and feet and tightness in my joints. Back, hip and bum pain, making it awkward to sit or lay comfortably . Making it difficult for me to live a normal life. If you ask me what I’d change the most, it would be my fatigue. I’m 26 with the energy of an 90 year old, even then that’s an insult to the elderly. My grandpa was 94, still working and driving. Putting not just me, but my generation to shame.

My condition impacts a lot in my life, a lot of my life. Family, friends and even partners just don’t understand what I go through and due to my age- they don’t necessarily believe me. Maybe it’s because I act as if I’m not in pain on a daily basis, although I do tend to moan on my worse days.

People who don’t suffer with my condition don’t realise that it impacts the most important yet simplistic things, such as walking, sex life, sitting, typing, having the energy to even move. The only way I can personally describe my fatigue is similar to depression. You have to battle with yourself everyday to get up, to go out, to go to work, those simple things that I wish were a lot simpler to me at my age. Having to find that motivation whilst battling through the pain and comments being made about how lazy you are.

Don’t get me wrong, I am partially lazy and I will never blame it all on my condition. We all have those days were we just like to sit in with a good film and relax. However, I mainly stay in and avoid socialising because I’m in too much pain and this requires energy that I can’t always gather.

Maybe with AS you do become slightly depressed. Most people are too afraid to say they are down, sad, depressed about themselves. Why? Why are we so frightened to admit this to the world?

I can honestly say that my physical health impacts my mental health and I’m not happy with how I am. But that’s my own fault as I haven’t got that mentality to change it and to push through it. It’s a constant battle that goes round and round in circles and you’re in a loop that you need to break out of. Otherwise you’ll never be yourself or happy. For me, I’m 26 and I’m unable to do the things all my friends are doing. I don’t have the money to do it because I’m always spending it on ways to improve my health. I feel like I’m not living the life that I’m capable of or feel like I’m not being my true self. That’s the hardest part.

Anyway, due to all of this, I’ve let myself go and let my health decrease. Partially by not taking care of myself, but then partially by not receiving the medical support needed.

I haven’t taken care of myself because I’ve pushed myself to work incredibly long hours with hardly any rest days due to the nature of my job. By this, I haven’t been able to prep and put myself on a nutritional diet that would help me lose the weight and boost my energy levels. Haven’t been to the gym that I pay fortunes for a month, (which I know everyone does, not just me!).

Medical professionals aren’t always the most supportive. Due to being diagnosed with AS, they assume everything that’s wrong with me is down to my AS and refuse to provide further support. An example being, my legs and my feet being in a horrendous amount of pain and this is something that’s never happened before. My mum thinks it could be sciatica or my AS. However went to the doctors who only gave me strong medication to take daily and advised me to go to the rheumatologist. Tried contacting them, I cannot get an appointment until June. Even when that appointment arrives, I still won’t be able to get to the bottom of what’s happening. When I even mention suffering with my fatigue, they tell me there’s no cure, nothing to give me that energy, to help with my motivation. To me that’s the lowest blow, because that’s what I need the most.

One thing I’ve learnt is to give yourself a resting period and amicable recovery time is key. Another key fact is to contact medical professionals when the medication is no longer effective. My Humira doesn’t seem to impact the pain I’m in.

The reality is no one can really help you besides yourself. I’ve learnt this over the last couple of months. I’ve learnt that I need to put myself first before others and before work. Because I’m the most important thing. That’s what you all need to remember. Regardless of what family, friends, partners or your managers think. Working on yourself to make yourself mentally and physically happy is the frame of mind you need to be in.

I’ve managed to get a month off of work to work on myself. No matter who I’ve annoyed along the way, I know I needed this. It was the Best decision I’ve made. I’ve booked two all inclusive holidays, one in Greece (where I currently am) and one in Mexico. As I need time to focus on myself.

Working on my physical and mental health. Going to the gym daily, swimming (to help my joints), eating the right foods and walking regularly. I have to say, I’m starting to feel a lot better and my health has decreased and I’m in less pain, even without my medication.

Book a sunny holiday, get away and take that time to work on yourself. Push yourself. Even if you don’t have the money, be spontaneous, like I was for once in my life. I know we have bills/ debts to pay, but don’t worry whilst you’re away. I used my salary for this month to book my second holiday, all inclusive and that’s just what I would have used this month on food etc. Do it for yourself.

I know it’s difficult and I know it may not last as we all have jobs and stressful lives to return to after. But, hopefully this gives you the motivation to start trying to improve your condition. Since being in the sun, taking that time for myself. I’m less fatigued, I’m working on my health and diet and becoming less stiff, my legs and feet are far less painful and I feel like a different person.

Never put work or anything above you. Money or work isn’t what makes the world go round, your happiness does.

Thanks for reading, I hope this helps. This is just my journey and I hope to change it. I’ll leave you with this…

Remember it’s okay not to be okay and seek medical or emotional/ financial advice if needed. I always thought it was embarrassing, but It’s not, it’s brave. It’s brave Embracing yourself and trying to find ways to improve yourself and make yourself feel good!

Written by Confessionsof26YearOld.

The post Physical and mental health with ankylosing spondylitis are more important than we allow it to be appeared first on ASone.

I am receiving a treatment, I feel good, and can live a full life, and I am extremely grateful to be able to do almost anything I like, since I know most of the people with AS don’t have that luxury. So how does this grueling sport fit into the picture?

I was always very sports focused. Since I was 14, I was always doing something. Usually extreme sports. I was doing skateboarding, parkour, MMA, all that type of stuff. I loved all of them, but not enough to stick with them for a long time. But I found Brazilian Jiu-Jitsu, and I am absolutely obsessed.

Brazilian jiu-jitsu is a martial art and combat sport system that focuses on grappling with particular emphasis on ground fighting. BJJ is founded on the concept that a smaller, weaker person can successfully defend themselves against a bigger, stronger, heavier opponent. This is done by using technique, leverage, and most notably, taking the fight to the ground, and then applying joint locks and choke-holds to defeat the opponent. BJJ training can be used for sport grappling tournaments and in self-defense situations. Sparring (commonly referred to as “rolling” within the BJJ community) and live drilling play a major role in training and the practitioner’s development. BJJ is considered a martial art, a sport, a method for promoting physical fitness and building character, and a way of life. I used to do MMA when I was younger and more able, so ground fighting wasn’t unknown for me, in fact, that’s the part of MMA I like the most.

After my diagnosis, I decided that I will sign up, and do this. Many would ask why. Out of spite. Out of resisting the truth. But I found relief in this sport. I actually have less stiffness the morning after a hard training session. I have consulted with my doctor about it. His opinion is, as long as I feel good doing it, do it. That’s what I wanted to hear.

I started training in September. Only once a week, since I didn’t know what my body could withstand with this awful condition. Only missed a session once, due to a flare, but training never caused me more pain. After the Christmas holidays, I started training consistently. Very consistently. 5-6 times a week. That’s obsession at this point. But, I also do a lot of yoga, stretching, all kinds of exercises, that I could find, and the NASS website has been a huge help for me, and I owe a lot to this organisation for this.

I recently signed up for a competition. I never wanted to compete, but my coach convinced me to do it. I haven’t really competed in my life, ever. Those nerves though, that adrenaline, and the excitement. It was a single elimination tournament. I fought two guys, unfortunately I lost the first bout on points, and in the second one, I got strangled and lost via submission. Doesn’t matter to be honest. It was the first time, great experience, and more motivation for next time. I am sure that I will win championships. But that’s not my end goal, though a good incentive. I just want to do this sport as much as I can, as long as I can. My true goal is getting my black belt, and opening my own academy. If I achieve that, I will be the happiest person alive.

Stay happy, and kick ASs!

Dave is a 26 years old and have been suffering from back pain since he was 19. If you would like to follow his Brazilian Jiu-Jitsu journey, you can do it on instagram and his blog.

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Something I often talk about is how important it is to be self-aware. Whether you have depression, diabetes, arthritis, anxiety, or any type of health issue. Back when I first became depressed, I tried to run from it for years. I told myself that I didn’t need help and I could handle it on my own, I don’t need someone else’s advice. As I thought that, over the years it started to build up more and more until I finally accepted that maybe I did need help. The things I used to do to make myself feel better weren’t working anymore, and life just became too much for me to handle. The best thing I could have done for myself was ask for help. I know it’s scary, but it’s 100% worth it.

So in the context of AS or any chronic illness, it’s so important to just accept it. Be aware that you have it, and that sadly, it’s not going to go away. Once you do that, life gets A LOT easier. Trust me.

Before I came to accept myself as a newly sick person, I was living in fear. Fear of what would happen to me, how people would see me, what my friends and family would think of me, etc. Fear is a big part of getting diagnosed with a lifelong illness. I can say that it never totally goes away, but once you do your research, and connect with people either in support groups or online, it becomes a lot easier to deal with.

Once you start doing your research, you can find an exercise plan, a diet plan, and make schedules for yourself. This stuff isn’t easy, and I still haven’t completely found a set schedule for myself yet. I’ve talked about it before, but the fatigue is the real kicker for me, it sets me back a lot, and on most days I still get frustrated and wonder how I’m going to live my life like this forever.

Finding in person or online communities is so important for your health and mental well being. I can’t tell you how amazing and included it makes you feel to find people that are going through exactly what you are, and are dealing with what you deal with on a daily basis.

For example, the Instagram chronic illness community is an amazing thing to be a part of. I’ve made tons of connections and new friends through Instagram and it makes it so much easier when a bad pain or mental day does happen. There’s always different perspectives and advice to be given because these people go through exactly what I go through. It’s incredibly freeing to be able to talk about my day to day chronic pain struggles and actually be understood.

Once I accepted that I have AS, and I have it for life, a whole new world opened up. One that was accepting, loving, understanding, and forgiving of myself as a human being. Having AS has made me realize that I am strong, and I go through what I go through because this is what the universe wants for me. I started my blog to be that voice in the darkness for someone who needs it, and I hope to be part of the support system for someone that needs it when they think they’ve hit rock bottom, because I know I did, and I was totally wrong.

Steff lives with AS and has a blog dedicated to helping others with this condition feel more comfortable and not alone. She writes about the struggles we go through on a daily basis from energy and fatigue to juggling AS with friendships. You can follow her on instagram and read more of her blogs here.

The post Accepting your chronic illness appeared first on ASone.

Now flare symptoms come in many variations depending on the condition you are living with, I can only talk about my personal experience with confidence. Having worked professionally with lots of other illness I also have an appreciation of these presentations, however I like to keep my blogs personal.

I have ankylosing spondylitis (AS) and hypermobility, two very different conditions however a typical cocktail mix for women. One condition would have me stiffen up with little chance of reversal and the other would have me lose so much muscle tone that my joints bend into the place of no return. These 2 conditions as you can imagine find it hard to live harmoniously.

Signs of an impending flare (48-24 hours prior) for me are as follows…..

– Sensitive teeth and sore gums

– Scalp sensitivity

– Blurry eyes

– Itchy skin

– Increase in body temperature

– Looming fatigue that increases by the hour

– Sense of dread for no reason

– Hair loss

– Sore Heels

– Brain fog

– Complete lack of motivation

Learning what YOUR flare signals are is a real game changer! Once you can do that, you can then retreat, adapt and move ahead with caution as to minimise the effect the flare has on your life.

It is also CRUCIAL that you get over yourself at this point! If a flare is coming you cannot ignore it, you cannot stop it completely, so don’t waste precious energy pretending you can. So what if you cannot wear those shoes you desperately wanted to, as you know deep down come the end of the night you will be in crippling agony begging for any pain relief you can get your hands on! Good friends would understand that you had to cancel that walking trip, you wouldn’t exactly be the life and soul if you forced your body through something like that. The gym will still be there next week, month or however long it takes. Practice gratitude, thank yourself for listening to your body and creating an environment where it can recover and move forwards.

I get it! I’ve been there, head fully wedged in the sand painting a smile on as I try my best to limp my way through a friends party, or a gym session. But, you owe nobody anything in this game. Makes friends with your greatest ally and keep a good circle of people around you that totally get it.

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