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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I self-medicated with alcohol. It didn’t happen often, but it happened enough. I was in a lot of pain, I could barely move, and I wanted to be able to go out and spend time with people, like any other 19 – 20-year-old. Alcohol fixed that, if only for a few hours. Nothing hurt and I was in a great mood and if the magic juice took the pain away, why not drink more? Then comes the next day, the hangover, the gaps in the memory and of course all the usual pain and lack of mobility, only amplified more by the hangover.

I knew what I was doing, I knew it wasn’t the answer and I knew I had to stop.

And I did stop. However, one of the main things that made me stop was getting my diagnosis and on my drug trial. I had hope and there was a light at the end of the tunnel, instead of at the bottom of a bottle. The feeling of hopelessness can lead us down dark and dangerous paths, especially when they feel like the only ones available to us. From someone that did it, please drink responsibly, don’t use alcohol (or drugs) as a coping mechanism. It definitely creates more problems than you think it solves.

If I could give my younger self any advice it would be to turn to the people in your life that care about you. They love you and want to be there for you.

I still drink, but not to self-medicate. Sure I’ve still had messy moments (my friends can show you pictures), but the motivation behind my drinking now is to be sociable and enjoy myself with friends and family, rather than to block out the pain by getting black out drunk.

Thanks for reading : )

You can find Jack on his Instagram , his poetry Instagram and you can read more of his work on his own blog . 

Help and support

As Jack explains, realising you have a problem with alcohol is the first big step to getting help.

A good place to start looking for help is with your GP. Try to be accurate and honest about how much you drink and any problems it may be causing you. Your GP will be able to suggest different types of assessment and support options available to you.

You can also search for alcohol support services in your area by using this link.

Some other useful organisations you might want to contact include:

• Drinkline is the national alcohol helpline. If you’re worried about your own or someone else’s drinking, you can call this free helpline in complete confidence. Call 0300 123 1110 (weekdays 9am to 8pm, weekends 11am to 4pm).
• Alcoholics Anonymous (AA) is a free self-help group. Its “12 step” programme involves getting sober with the help of regular support groups.
• SMART Recovery groups help people decide whether they have a problem, build up their motivation to change, and offer a set of proven tools and techniques to support recovery.

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.

Will my back behave itself?

Will I be struck down with debilitating fatigue?

Could I be aching so bad that I can’t even carry my rucksack to the campsites?

Will I be shuffling back to my tent at 10pm each night, old lady style?

The anxiety was real. I was SO excited to go “the biggest party in the world”, but I couldn’t help worrying that it would be a massive anticlimax due to me and my glass back. Luckily for me, my fears were mostly redundant. Although I had a few aches and pains here and there, I had a great time and wouldn’t change my festival experience for the world. Annoyingly some of it comes down to luck – whether your Ankylosing Spondylitis will rear it’s ugly head during your music festival or not, but there’s still a lot you can do to prevent that from happening. I’ve put together a few ideas that did me some good, and can hopefully help you out too…

Get yourself fit.

By no means am I saying climb a mountain or two beforehand, or run a half-marathon in preparation, but it would be wise to up your fitness level just a little bit before the biggest week of the year. Even if you’re just planning on chilling at your campside the whole time (why?), you’ll need some power behind you for the initial dash to said campside of the first day. ‘Cause once those gates are declared open, the race is on for the best pitch spots…and you don’t wanna be one of the ones lagging behind who end up next to the toilets.

Glastonbury is a marathon, not a sprint. It’s five long days and five even longer nights…of minimal sleep, an average of 30 miles walked over the duration and some questionable life choices. You don’t wanna go down and stay down on the second day. Not only is stamina a good thing to build up for a marathon music festival, you’ll also wanna work on your balance and core strength for the hardcore crushes after the headliners each night and at peak times during the day. These ain’t no joke and they can actually be quite dangerous if you don’t keep your wits about you. Engage your core muscles, hold steady and you won’t be trampled on. Be safe.

Also ladies – it’s wouldn’t be a bad idea to get some squats in as preparation for the inevitable hover over the longdrop on day 3. Just sayin’.

Don’t forget your meds!

Your packing list should contain wellies, biodegradable wet wipes, a bum bag and toilet paper at the bare minimum. But it should also contain your meds, your pain relief and anything else that makes you feel better when your body is aching. You need to be a bit organised with your prescriptions in the months ahead – make sure you don’t run out or your prescription is due whilst at the festival.

Stock up on pain relief and anti inflammatory drugs leading up to your leaving date, but if you run out during the festival, don’t worry, there’s always a shop onsite to get some more.

Be prepared and write down everything you’ll need to pack a couple of weeks beforehand, to make sure you don’t forget anything last minute. If it’s your first time, there’s loadsssss of blogs online featuring decent packing lists that you can copy. Just add your medications and off you go!

Work out what type of bed is best for you.

This’ll take some active research I’m afraid. You’ll need to test out a few different methods beforehand to learn what’s good for you – you don’t wanna go to a music festival ill-prepared, only to get zero sleep at night, and be a mumbling zombie during the day (there’s enough of them around Glasto anyway )!

Some people need a proper off-the-floor camping bed to get a good night’s sleep, but others are happy with just a yoga mat between them and the grass! Sometimes people discover that a few nights on the hard ground can do wonders for the back, us included, but it’s not for everyone!

We opted for a blow-up air bed, which normally suits us fine, but we soon realised that it had a pesky puncture and the blighter wouldn’t stay up!  But it all worked out fine though; we were so knackered when we crawled into bed that nothing was gonna stop us catching some much-needed zzz’s.

Don’t overdo it.

This is a real challenge at Glastonbury in particular. There’s so much to do, all the time! Wherever you go there’s something drawing you in, inviting you to take part in something crazy or get your dance on. My advice? That’s all fine and dandy but it’s okay to sit down and take a breather once in a while. Music festivals have loads of places to take a load off and put your feet up, if only for 10 minutes. My fave Glastonbury chill spots were at the Stone Circle, gazing at the incredible view below us, and the Theatre and Circus Field, where I could literally sit all day watching the comings and goings of jugglers, trapeze artists and comedians entertaining the passer-bys.

If someone’s yanking you towards the dance tent at 2am, telling you the night’s still young, but you’ve got them nasty, knawing pains in your back and hips, it’s probably time to kiss them goodnight and shuffle back to your air mattress…Even if it’s bloomin’ flat!  You know your body better than anyone – if it tells you it’s had enough, call it a night. There’s absolutely NO shame in that!

Keep it moving. Shake that booty!

Sounds like a complete contrast to the advice above I know, but take note of this one too. As important as it is to chill out sometimes, that doesn’t mean it’s a good idea to park up on your camping chair in front the Pyramid Stage (or whatever main stage you have at your chosen festival) for the entire day. No, no, no siree bob! That’s just crying out for a flare to pop up out of the blue. What’s the number one rule for us AS-ers?  KEEP IT MOVING AND SHAKING PEEPS! #refusetofuse

There’s plenty of physical activities you can get involved in at a music festival. At Glastonbury Festival this year there was rock climbing, skate boarding, morning yoga, running clubs, not to mention the salsa dancing lessons three times a day!  So there’s really no excuse not to stay active.

Stay flexible and agile and you’ll be less likely to be struck down by a flare attack. Which would NOT be ideal for a music festival at all!

But if it does happen, I’ve put together a few handy tips for coping with an AS flare attack – all of which you definitely can do at Glastonbury Festival.

Eat healthily…(if you can )

I’m a bit of a pants advocate for this but I’ll say it anyway. Try and maintain a healthy diet on your little festival holiday, whether it’s two days or five days long, it’s important to keep stocked up with greens and proteins, if only for energy purposes to keep you partying for longer. Speaking for Glastonbury Festival, there were soooooo many wholesome, healthy food stalls selling everything from Buddha bowls to sushi to vegan curry, so there’s no real excuse for not getting your five-a-day…and no, we’re sorry but wine and cider do not count as grapes and apples.

I can safely say I am well and truly brilliant…at not doing this! Sorry I won’t lie to you. I managed a couple of smoothies, a few salads and a handful of cherries here and there, but it was mostly stodge. But I tell you something – it was super tasty stodge, and I regret nothing. But I will try harder at the next festival. Promise.

Prepare to be exhausted.

Sure you’ll get moments of youthful exuberance at the thought of watching a favourite band or eating some tasty food or just generally partying the night away. But you’ll also be tired. Like. ALL the time. But so is everyone.

If you go to Glastonbury pre-accepting the fact that your brain and body will feel like mushy offal most the time, then you’ll expect the inescapable escapes to sleepyland. For instance, you won’t be surprised when you find yourself stirring awake next to the John Peel tent at 2pm, having just slept through Tom Walker’s entire set, including your favourite song right now!

Book a few days off after the festival before going back to work...you’ll need it.

If you’re anything like me, you WILL come back a shell of the human you were a week ago. I had two and a half days to recover from Glasto and I still felt like the walking dead when I hobbled into the kitchen on Wednesday afternoon. It’s really okay to take some time off to get yourself feeling like yourself again. You’ll likely be dehydrated, lacking in proper nutrients and vitamins, sunburnt/ trenchfooted (depending on the Glastonbury weather Gods ) and desperately in need of catching up on some sleep. Do yourself a favour and stay at home for a couple of days, guzzle gallons of water and enjoy some much-needed quality time with your pillow.

ENJOY YOURSELF!

This, this and THIS more than anything.

Stress is one of the biggest contributors to an Ankylosing Spondylitis flare, so put all your stresses aside, go to your music festival and have the time of your lives guys and gals.

Don’t worry about anything, go with the flow and dance the freakin’ night away! You’ve most likely paid a wholleeee lotta dolla to go, so don’t waste it by panicking about the small things. Who cares that you’ve got Ankylosing Spondylitis when you’re at the biggest music festival of dreams? Remember – you’re one of the lucky ones. Embrace everything, do everything, see everything, laugh lots, love freely and HAVE FUN!

Written by https://www.laterstaters.com/  

The post How to do Glastonbury Festival with Ankylosing Spondylitis 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.

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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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I always think to myself that I can’t picture a person that has a chronic illness and doesn’t experience depression. It’s just so hand-in-hand to me at this point that I don’t know how you wouldn’t have both. Having a chronic illness is by far the hardest thing I’ve ever gone through. It affects you socially, physically, mentally, financially, basically any way you can think of. It changes your entire life. You have to adjust life as you knew it and do everything differently. No wonder one-third of us are depressed, too.

Chronic illnesses aren’t talked about very openly. Before I got one, I had no idea what they were. Being in pain forever? How can that be possible? Little did I know.

When I first started being in pain, I isolated myself from everyone for months. Partly because I couldn’t even walk on my own, let alone go out and be social, but also because I got so tired of being asked what was wrong with me. I didn’t know, doctors didn’t know, so how could I explain that to someone who wasn’t going through what I was going through? It was a dark time in my life, to say the least.

I know that a lot of people go through isolation while dealing with chronic illness. Isolation directly leads to depression. There’s no way it couldn’t. Humans aren’t meant to be alone. Not being able to do what I used to do with my friends was and still is very depressing to me, especially as a young person with a chronic illness. All I want to do is go out and do stupid twenty-something-year-old things with my friends, but those days are behind me and have been for a while. That doesn’t mean that it gets any easier. Or at least it hasn’t yet.

And then of course there are the days where the pain is especially bad. Those days where you kind of forgot that you were in pain for a while, and then it appears just to remind you that it’s there, and it’s not going anywhere. This is called a flare-up. These days are terrible because they’re just a constant reminder that you’re going to be in pain forever. At least that’s what they’re like for me.

On a normal day, I tend to forget that this is my life because I’ve become so accustomed to it, but the days where I’m limping, or can’t move from the bed or the couch tend to be really depressing. You kind of just get used to the hot packs and Netflix, and wait for the flare to be over.

I’m not the person to tell you there’s some magic cure to handling both a chronic illness and a mental illness (or more than one). But, I can say that finding someone, whether that be a family member, a close friend, or a therapist to confide in and talk through what you’re going through can be incredibly healing. I’m also not going to tell you that having someone to talk to makes it all better, but it can help even a little bit when things are particularly bad in your head. Taking that step to talk to a professional has been what’s kept me (for the most part) grounded since being diagnosed with AS one year ago.

Please don’t ever hesitate to contact me either through the comments here or on my Instagram account if you need an ear to listen. I’m more than happy to help anyone who needs it! As for dealing with chronic and mental illness, that’s an obstacle that I, and many others are still dealing with on a very regular basis.

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.

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