First thing’s first

Getting in and out of a car comfortably can be really difficult when your back is stiff and painful. Here’s a simple technique that may help:

1. To get in, open the door wide and stand with your back to sit seat
2. Slowly sit down onto the seat (making sure to duck your head if you need to)
3. Once seated, pivot on the spot to swing your legs into the footwell (rather than twisting your back)

To get out of the car, you simply do the same technique in reverse:

1. Pivot on the spot to swing your legs out of the car.
2. Plant your feet down, ensuring you have good support and balance.
3. Push up with your legs (while minding your head) to stand upright.

If you need support during this, holding onto the dashboard will give you more stability than the door. If you use a stick as a mobility aid, you can get that into a comfortable position and use that to push up as well. One of my patients taught me that once you’re sat on the car seat, you could slip a plastic bag underneath you, so that you pivot more easily on the seat. Remove the bag before driving, so that you’re safe and not moving around on the seat. You can use the bag when getting out of the car, too.

Explore different cars

It’s worth exploring different cars to find one that works well for you. When shopping around:

• Try getting in and out so check the height and door frame size.
• Adjust the seat to ensure that you can get it into a comfortable position.
• Try maneuvers on a test drive, such as reversing and parallel parking, to ensure that the car is comfortable and you have good visibility.
• If you have lots of hip or shoulder problems, automatic cars can be more comfortable.
• Look for power steering and braking.
• Parking sensors can help reduce the amount you need to turn.

Positioning yourself when driving

When sitting in the drivers seat, there are some simple adjustments you can make to ensure you’re supported.

• The seat should be close enough so that you have a slight relaxed bend in your knees when the peddle is fully depressed.
• The chair should be upright and supporting you, but without pushing your body forwards.
• You don’t want your arms overstretching, there should be a slight bend in your elbows when holding onto the steering wheel (but ensure the wheel isn’t too close so that it’s safe if the air bag goes off).
• The head restraint should be just behind your head, so that in the event of an accident it will stop your head moving backwards (but ensure that when you’re relaxed into the seat, it’s not pushing your head forwards).
• Adjust the wing mirrors and rear view mirror so that you can see them without having to twist or strain.

Positioning yourself when you’re a passenger

As a passenger, you have a little more flexibility with your seating position.

• The back of the seat should be upright, but without pushing you forwards.
• You can push your seat back so that you can either stretch out your legs or bend your knees to plant your feet on the floor.

Consider using cushions

You can place a small lumbar support cushion behind your low back, but ensure it has a strap around it to secure it to the seat. If you experience lots of rib or mid-back pain, try a foam cover for the seat belt to reduce the pressure across your chest. Passengers can also use a neck pillow to support their head and neck.

Heat can be soothing

Many people with axial SpA (AS) find heat really soothing. You can use your car journey to your advantage by investing in a heated seat cover that plugs into your car, allowing you to use heat safely while sitting still.

Does ice help you more?

Ice is a little trickier to apply on the move! To get around this, you could:

• Ice the area for 10-minutes before you drive.
• Take single-use ice packs or ice packs in a cooler if you’re going on a long journey. You can use these on rest breaks or when you reach your destination.

We don’t advise applying ice while you drive – both for the obvious safety risk, but also because you may accidentally leave it on a lot longer than you should. When applying ice, always wrap it in a towel to protect your skin from ice burns.

Take regular breaks

As always, the best thing to reduce axial SpA (AS) pain and stiffness building up is to move regularly. On longer car journeys, try to stop and walk around or stretch every 45-60 minutes. Sometimes your back can feel fine at the time, but then be very painful when you try to get out of the car, so planning in particular rest stops will reduce the likelihood of this happening. Regular rests are important for your concentration too, so it’s a win-win!

Exercises

All of these exercise suggestions should be comfortable. If you’re unsure if they’re suitable for you, chat with your doctor or physiotherapist before trying them.

As a passenger, you have more options to move around and exercise during a journey. Always ensure you keep your seatbelt on even when exercising. Try out these simple movements to reduce your joint stiffness, performing the movements slowly and gently:

1. Gently turn your head and neck to look to the left as far as comfortable, then repeat to the right.
2. While looking forwards, slowly tilt your left ear towards your left shoulder as far as comfortable, then repeat to the right.
3. Gently tilt your chin down towards your chest, then return to the centre.
4. If you don’t have any neck problems or nerve pain, slowly look up as far as comfortable, before returning to the centre.
5. Shrug your shoulders up towards your ears, then roll them forwards in circles three times.
6. Roll your shoulders backwards in circles three times, then relax your shoulders down.
7. As far as possible while keeping your seatbelt secure, you can gently twist your body to the left to get a slight twist in your spine. Then repeat to the right.
8. Push into the floor with your feet and shift your weight to the right side, to lift the left hip off the seat slightly. Repeat to the opposite side. This gently bends your low back and you can repeat it a few times slowly and rhythmically.
9. Gently arch your low back and then slump into the seat slightly. Return to a comfortable, upright seated position.
10. Stretch your legs out in front of you and place your feet together. Slowly let your hips relax, so your legs turn out and your knees fall away from each other. If this is comfortable, you can relax in this position for a few seconds.
11. Separate your feet to about hip width, then keep your feet on the floor as you relax your hips so your knees relax into each other.
12. Point the toes on your left foot towards the floor, while you point the toes on your right foot up towards you. Alternate these movements in a foot pumping action to loosen your ankles and boost your circulation.

The driver can do the exercises above when you stop for rest breaks (and the car engine is switched off). It can be helpful to do them in the passenger seat or back of the car, so you have more room in the foot well.

At rest breaks, walking is one of the best activities you can do to help loosen up before continuing the journey.

These standing exercises can also be really effective for loosening up your joints and stretching your muscles:

1. Stand with your feet hip width apart, then take your hands overhead to stretch your spine upwards.
2. Place your hands on your waist and gently move your hips side to side (this will loosen your back, as well as your hip joints).
3. Relax your arms beside you and gently roll your shoulders forwards and backwards.
4. If comfortable, you can look down towards the floor and then roll your spine down to reach towards the ground (only go as far as comfortable). You can hold this for one breath, before slowly coming back up to standing.
5. Standing comfortably, place the palms of your hands on your low back to provide some support. Then, gentle arch your back and lift for your chest bone towards the ceiling as far as comfortable, before returning to the starting position.
6. Stand beside the car, so you can use it for balance and support if you need. Step your right leg behind you and bend gently bend your left knee to do a lunge. You should feel a stretch in your right thigh and possibly both calf muscles. Repeat this on the other side.
7. Also using the car for support, stand on your left leg and swing your right leg forwards and backwards in a slow and controlled movement. Repeat on the other side.
8. Open the car door and place the heel of your right leg on the edge of the doorframe. Stand up nice and tall, holding onto the car for balance if needed. You should feel a gentle stretch at the back of your right thigh.

You can download these exercise sheets to take with you on journeys as reminders to keep moving regularly.

Things to be aware of

Remember, you shouldn’t drive if:

• Your flare is significantly affecting your mobility.
• Your flare is causing pain that will affect your concentration.
• Your medication is making you drowsy.
• You’re experiencing a lot of fatigue.

If you feel your axial SpA (AS) is affecting your ability to drive safely or comfortably, then do speak to your doctor. Your doctor or pharmacist can also discuss medication side effects if you’re experiencing drowsiness or difficulty concentrating.

It can also be helpful to speak to the charity Driving Mobility. This charity can help with car adaptations to keep you driving, for example fitting larger wing and rear view mirrors. The service is free if you’re referred by the DVLA and there is a small charge if you self-refer. Please remember to check with the DVLA when considering car adaptations, because they may need to be notified of your axial SpA (AS) before making these changes.

Visit our website to find out more about when you need to contact the DVLA and how to do so. You can also read Government advice about driving and axial SpA (AS).

The link above to our website also has information on the Motability Scheme and the Blue Badge Scheme. There is a lot of help and support out there to keep you driving safely and comfortably, so do get in touch if you would like any advice.

Summary

• Shop around for the best car for you and test it out thoroughly.
• Take care on getting in and out of the car comfortably.
• Use all the features in the car to adjust the seat, steering wheel and mirrors to set it up well.
• Take regular breaks to move, exercise or apply ice and heat.
• Speak to your doctor about driving for more specific advice.
• Check our website to understand whether the DVLA need to be informed of your axial SpA (AS).
• Look into the Motability Scheme, Blue Badge Scheme and the charity Driving Mobility.

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

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

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

The post On the road again – driving comfortably with axial SpA (AS) appeared first on ASone.

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.

Ben started with episodes of back, hip, neck and knee pain aged 8 just after he’d had scarlet fever. Fortunately for him, the GP was a little more switched on by then as his Mum has been diagnosed some 8 years before. At the time he said it seemed likely that Ben was developing AS. For his Mum it was like watching herself go through those early years all over again. The big difference was, they now had the knowledge of AS and knowledge is power.

His flares became more frequent in his teens and Ben himself asked the GP if he could have a blood test and lower back x-ray when he was 14. The results muddied the waters for a while. Ben wasn’t HLA B27 positive but even at 14, his x-Ray showed that he had unhappy sacroiliac joints. He didn’t actually see a rheumatologist for another 3 years after he’d had a really bad bout of glandular fever and flares became much more severe. The diagnosis of ‘mild AS’, Axial SpA as it is now, was made.

The steroid shot he was given that day was to bring another massive life long change. A few weeks after that shot, he became a type 1 diabetic. In the high dependency unit at the hospital, they said that the steroid shot on top of the recent bad infection was just too much for his pancreas. In typical Ben style, from day 1 he didn’t let that hold him back and has always coped with it in his usual stubborn and determined way.

Ben had a huge series of blows in a short space of time but coped brilliantly with both AS and diabetes and longed to become an entomologist. This year, he has a six month conservation internship in the Peruvian Amazon jungle (as you can see in the video!) and is absolutely loving it, telling AS ‘Not Today!’ on a daily basis. 

You can follow Ben’s journey in his vlog The Diabetic Conservationist.

The post Not Today! – Ben’s message to ankylosing spondylitis appeared first on ASone.

Firstly even if you are a last minute packer you cannot be last minute with your medications! I always order a new batch of all my meds about 2 weeks before I am due to fly and I always take enough to tackle the worst flare I could possibly imagine (I’d always rather come back with a lot than not have enough in a foreign country!). I also check whether the country I am going to is funny with any of my meds. I use tramadol for severe flares and some countries don’t allow it without medical proof, so this gives me enough time to get medical evidence from my GP.

I also am on anti-TNF and in general once I’ve booked my holiday, if it is just a week, I will try to make sure my injection isn’t in that week by waiting an extra day post injection day each month till it is no longer in holiday time!

If it is longer than a week I have my cool bag that lasts 72hrs and my letter of medical evidence from healthcare at home. My injection and some meds travel in my hand luggage so that if my suitcase gets lost I’m not without my essential medications! I also bring my little fridge thermometer and if the mini bar fridge is not in range I just contact reception and mostly the hotel staff come straight away and are very accommodating!

I also call the hotel ahead of time if it’s a big complex to explain that I have AS and ask to be put as central as possible to everything in case of a flare, so I don’t have to walk too far in pain!

I also am very on top of sunscreen, I’ve found even if I burn slightly it increases my pain massively so I usually use factor 50 for my more sensitive areas and an all day factor 30.

Beds and sun beds can also be a source of pain so I try to keep active by going for trips out or walks, swimming and I’ve just started yoga so will probably do that in the mornings to keep supple and as comfortable as possible!

I also bring my hot water bottle and ice pack in case of flares.

Recently also I have been plagued by many many bouts of tonsillitis so have planned with my GP to have a “rescue” pack of antibiotics!

Now usually due to it not being my own bed, the change in schedule etc… I don’t sleep well overnight. I try to make sure I give myself a chance for a siesta during the day to recharge my batteries before the evening, so I can continue having a good time with whomever I am on holiday. That’s the main reason for going on holiday: to enjoy myself, isn’t it?

And with my extra planning I can relax and enjoy the sun, sea and sangria!

So my top tips are:

• Plan ahead: especially ‘the worst case scenario’
• Get proactive in getting anything you feel may benefit you
• Research the destination thoroughly
• Bring medical evidence
• Look after yourself so you can enjoy yourself

Steph is a newly qualified physiotherapist that happens to have ankylosing spondylitis and blogs about it.. a lot! Find her on Instagram, or visit her Blog.

The post Going on holiday? Things to remember with your ankylosing spondylitis. appeared first on ASone.

Do not stress.

I know it is easier said than done. While the worry of flare-ups on holiday can be a concern, it is best to remember how you deal with them at home and apply that same methodology to when you travel. Have a favourite tea that helps you sleep? Pack it. Have a yoga routine that you like doing? Well, do that on holiday as well. Those little comforts will go a long way to making your travels easier both on your body and your mind.

Be aware of how you are getting where you are going.

Long haul flight? Car journey? Know how you are getting there. Now, the topic of flying always comes up with drugs such as Anti-TNFs due to the nature of the medication (injections) and the fact that it needs to be taken on your person. I personally travel with a little portable mini-fridge kind of pouch that keeps my medication at the correct temperature (it even has a handy little thermometer), a doctor’s letter, a copy of my diagnosis, and some mention of why there have to be freezer packs (freezer packs are their main issue as they are ‘liquid’). I have not had any issues with any security agent (apart from one grumpy man at the Luton airport) when travelling to any country. When you arrive at your destination, a lot of places will be more than happy to empty out their mini-fridges to keep your medication at the correct temperature. Also, you can just ask behind the bar for them to freeze the freezer packs before you leave (if you have any medication left).

Now, the second part of travelling. Take breaks. If you are flying for 11 hours do not sit for 11 hours. Oh, also, snag an aisle seat if you can so you can stretch your legs. The same ‘do no sit all the time’ applies to car travel (although it is much easier to pull over and get out for a walk when travelling by car!), and switch on those heated seats if you can!

Time your dosages.

Not everyone with AS takes biologics, if you do, then time your doses. I personally have to take a dose every two weeks, so if I can take a dose a day or so early and my next dose a day or two late as to ensure that I don’t need to travel with any medication then I do that. It has not failed me yet. Yes, it can be a bit scary to think “wait, I am late with my doseage”. If this is something you are truly worried about speak to your doctor and then maybe do a ‘trial run’ at home to see how you react.

More tips and some ramblings.

The most important thing is to enjoy yourself. You are young. We get to do this whole thing once and there’s no point in worrying so much about a possible flare up that can ruin your holiday or travels. I remember when I first left home I was so petrified of a crippling flare up (like the ones that I used to have) that I created a sense of self-induced panic. Things like this can ruin your holiday. Be aware of your AS. Be aware of how your body feels. However, do not let your body control your life. Respect it, look after it, but ultimately have fun!

Max is a 22 year student who always competed at sport, and since he was diagnosed at 17 he has continued to be as active as possible. AS does not stop him from travelling the world, climbing, running (and a host of other activities). In fact, he believes that this has helped him tremendously both physically and mentally, and he hopes to be able to follow his passions for a very, very, long time. You can find Max on Instagram or on the YouTube.

The post Things to keep in mind when travelling with ankylosing spondylitis. appeared first on ASone.

I wondered:

• Will travel insurance be really expensive?
• Should I take my Humira and Methotrexate injections with me?
• What rucksack would be best for my back?
• What do I do if I flare?

Sorting the travel insurance was easier than I expected. This was the first time I was going away and wouldn’t be covered by my parents’ travel insurance, and was the first time going away on my own while taking biologics.

I was worried it would make insurance really expensive, but actually I got a years worldwide insurance with winter sports included for just over £40! Not bad at all!

I shopped around and found a company that suited me best. I was surprised that none of the insurance questions about my arthritis asked if I was taking medications that could suppress my immune system. I was so surprised that I actually called the insurance company I used to make sure that I hadn’t missed anything on the form. I was assured I had completed it correctly.

My holiday crossed two biologic and DMARD injections. I was worried about storing Humira. When you’re travelling in hot countries, living in hostels with fridges that are shared with everyone in the hostel and living out of a backpack, how are you supposed to make sure you have stored Humira at the correct temperature?

I talked to my Biologics Nurse who spoke to my consultant and together they decided that I could take both medications Humira a day before I travelled and not take my next dose until the day I got back from my travels. Phew!! That was one big worry off my plate!

My Biologics Nurse and I also discussed how to stay safe, I was encouraged not to drink water from fountains that didn’t specifically say they had safe drinking water, and to be careful when eating food from street vendors to reduce the risk of getting any infections whilst away. We also briefly talked about flares and decided that I should take my NSAIDs with me while away just in case of a flare.

Then I had to think about what backpack would be appropriate to carry everything I needed and didn’t hurt my back. I reached out to the NASS who put a post on Facebook asking for opinions, and the consensus was one that had a hip belt.

Then I went out to a local outdoor shop that had a selection of rucksacks with various designs to try. I finally settled on a bag with a detachable smaller rucksack and had both a hip and chest strap. I felt that this gave me quite a lot of support with the weight of the back and didn’t hurt my joints once I had adjusted it so that most of the weight was on the hip/waist strap. I definitely think going to the shop and trying out a few different bags was worth it, then I could find one that was the most comfortable for me.

In terms of the actual travel on flights over to Dubrovnik and back from Prague, I wasn’t too concerned. I researched all the airports we were flying from and to before going away and found that none of the airports were that big and some only had one terminal, which meant that I felt I would be able to get around without enquiring about accessibility.

The same went for the flights, I felt that my joints were good enough that I didn’t need to book an aisle seat and I could leave those free for someone who might have needed them more than myself.

The travel I was most concerned about were the long bus trips and the single overnight bus that we took between Dubrovnik and Zagreb. I wasn’t sure how my joints would like spending the entire night in a sitting position. Perhaps fortunately, the toilet was broken on this bus, which meant we stopped regularly for toilet breaks, which was an opportunity to walk around. I decided that for most of the bus journeys the best way the pass the time was to catch up on some much needed sleep. This worked for the most part but I should have taken a travel pillow as my neck did bother me.

All in all, the holiday was excellent and my arthritis was really well behaved. There were some days that we were walking 31,000 steps up and down steep hills, which would have been really difficult for me if I hadn’t been on an appropriate treatment plan.

We tried to incorporate rest breaks into our day by making a rough outline of what we wanted to do and taking our books with us so that if we found a nice spot in the shade, we could have a break and relax. I think a big factor in my arthritis not flaring was that we considered how to get from the bus stops to the hotels and selected our hostels based on their reviews and the length of walk from where our bus was dropping us off. This meant that we were often not walking longer than 30 minutes with our heavy rucksacks, which I think contributed to how well my joints felt while we were away.

Jenni is a 21 years old, fresh out of Uni Physiotherapist, you can follow her story on youngarthur.blogspot.co.uk

The post The summer adventure with a backpack and spondyloarthritis appeared first on ASone.

However, my world was shaken last year. I discovered a new companion in my life called ankylosing spondylitis. All the time I’d been cycling I hadn’t realised my pain and stiffness were due to AS, I thought it was only related to mechanical issues. I kept finding excuses and did all I could to keep cycling.

My symptoms worsend I kept cycling because I was doing what I love. I  couldn’t and simply didn’t want to believe that something was wrong and that my loyal body which helped me to live through all those amazing adventures had changed. I completed my last mountain pass while coming back to Switzerland, my body and my bicycle were giving up… so I decided to see a doctor

During the my journey to diagnosis , I changed from a fit, flexible and active cyclist, to not being able to walk, braid my hair, get out of bed, sneeze without falling apart or put on my socks. I lost confidence in myself, in my body, in my life. I didn’t recognise who I was.

When I was eventually diagnosed I started to learn more about AS and finally found hope. I realised knowing and understanding my symptoms and condition was the first step to start climbing back up that steep hill I had fallen down.

From then I decided that I would find ways to continue living my life and accept AS as a part of it. I decided to strive again for what is important for me.

With a lot of patience, determination, self-care and the help of anti-inflammatory drugs, very slowly I started to become active again. I aimed daily at tiny goals, then I steadily increased them accordingly to my day to day condition activity. It worked!

Now I am able to walk 10 000 steps again and even run a few miles. Sometimes it’s still hard to believe how far I have come, but I did. And my mental well-being has started to improve as well!

Today I am convinced that being so active for so long had helped me to cope with my symptoms and maybe slowed down the illness. What I’m absolutely positive about is that doing what I enjoy the most has allowed me to go through the worst times and helped my mind to stay focused on my dreams.

I am a traveller, I am an adventurer and I’m not giving it up. Each day is a gift, even if it’s difficult to unwrap, and I’m not going to let even one day slip by me.  So even though a diagnosis might be heavy on the shoulders and can be very hard to accept, it can also be the beginning of a new journey. the journey to hold on to what you love the most, to stay alive and to do everything you can to make it happen. No matter what circumstances you are now in, keep believing in what you deeply want because you might be able to find ways to make it happen. But more than anything try to do things that you love and have meaning for you because that’s what counts! Don’t let AS take your dreams away.

A Swiss (Laetitia) cycled more than 30,000km to China and met a Canadian (James) at a martial arts school. Since then, their roads became one, and the bicycle tour bug was passed on. They have created the Hope in Motion project, raising awareness of AS and continue their journey! You can follow their trip through the Europe on Instagram @hopeinmotionlife

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Ensure you arrive with plenty of time on the day it starts. It takes ages to find a spot and with all the queues it’s so tiring. It’s a good idea to take a little wheelbarrow/trolley to load all your stuff, it’s easier to push or pull than carry a large camping back pack. Make sure your medication is in pre-pack days to ensure it’s taken.

Poppymae

Always try to be a bit ahead of time. This will help you avoid the crowds queuing and give you enough time to get ready and rest before the shows begin. Carrying aids are fabulous idea but keep in mind they can turn out to be useless when it gets muddy. Feel free to nominate some of your friends to help you carrying stuff, we should help each other, right?

Regular sleeping patterns promote good sleep. Whatever time you drop, try and get in at least 8 hours before you need to get up. Take a sleeping blindfold and earplugs with you. Don’t be tempted to stay up really late, the heat of the sun will wake you up early.

Christov

Trying to get enough sleep in a camping situation with loud party people around can be challenging.  Make it a priority to have a good nap, even if you have to miss some acts. It will be worth it if you don’t feel horrible and tired for the rest of the festival.

Mosh pits are not your friend when you have AS!! They get pretty rowdy but if anyone falls, they’re always pulled back to their feet because everyone looks after each other.

Liz

Take a camping chair to the arena with you, otherwise you’re on your feet from 9-12, unless you are able and feel comfortable to sit on the floor. Sounds stupid, but take a mini kettle and hot water bottles to shove on your back every night to loosen you up. And booze. Lots and lots of booze to numb the pain!

Melissa

If you’re all about sex, drugs and rock’n’roll festivals are definitely a place for you. However, even if you plan to ‘let it go’ more than Elsa in Frozen be careful and take it easy. Getting into a massive mosh pit or jumping up and down in a dancing tent till dawn on the first night might not be the best idea. Avoiding dodgy people with dodgy substances and going easy on alcohol is just a common sense. Keep yourself hydrated as well, especially if the weather is hot and you’re having some pints. This will save you not only from a hangover but can reduce muscle pains and fatigue.

Everyone has different levels as far as stamina goes. Most festivals will have seating available away from the stages so you can take a break, or take a picnic mat or foldaway chair if you think you may need one. If you have very severe AS and are registered disabled you should be able to access the disabled viewing area and the disabled camping area.

Joey

Give your back a break regularly. Standing for a long time can cause fatigue to your pelvis and core muscles resting the stress from standing in your lower back joints. Do some stretches every half an hour or so; bring a foldable chair or even better: a laysack and sit or lay down when you need to. Even if endorphins caused by seeing your favourite band for the first time keep the pain away, for sure you will feel it later.

If towel is the most massively useful thing when hitch-hiking through the galaxy, blanket is the same for festivals. It can keep you warm, provide comfy sitting space and protect form rain. Invest in one with the water-resistant plastic backing, it will stay dry for longer.

Some boutique festivals often organise walks, yoga classes, meditation sessions and even spa treatments. Keep in mind it all probably will cost extra money, but could be a good way to take a break from festival’s hustle and bustle.

One of the most important advice we can give is: plan your festival comedown. Don’t lie to yourself, you won’t come back fresh, rested and full of energy, you will be absolutely knackered. Take one or two days off extra from work and responsibilities, plan something nice, relaxing and good for your AS. A day in Jacuzzi? Sorted.

The last (but not least) piece of advice we can give is: visit our own NASS festival – Members’ Day! It’s fun, packed with a lot of activities and informative sessions, and the best part?  It’s free for you and your one guest when you join NASS!

The post Your Summer Festival Guide pt II – At the festival appeared first on ASone.

Read all the info on the festival’s website. Most festivals will have a facility to store medication that needs to be refrigerated, you may have to contact them before arrival though to organise this. Also, if you are worried about losing your tablets or having them stolen, you can usually hire a locker at festivals too. Some festivals even have a pharmacy onsite nowadays. 

Joey

Juggle your meds dates around beforehand so you don’t have to remember to take them during festival or find a fridge for your biologic. If that’s not possible big festivals may have a fridge to store meds, check in advance.

Liz

The festival’s website is where you want to start getting ready for your trip. Check the facilities, services and disabled access info. In most cases, even if you don’t intend to stay at the accessible campsite you still have to apply beforehand to get access (to the medication fridge for example). It’s better to let organisers know beforehand rather than struggle later. While an onsite pharmacy might be a lifesaver, keep in mind they probably won’t have much more than an ibuprofen.

Tent you can stand up in, may be better than a smaller one, so you can have more room to manoeuvre around easier. If you can afford it you could always just buy arena only tickets and book a nearby hotel or opt for a VIP package if the festival offers that for more comfort.  

Joey

Invest in a good portable or inflatable mattress if your camping in a tent. Don’t forget to try it out before you go!

Megan

Take a trip to the camping shop and check available tents, even if you plan to buy one online. This will give you a better idea of the size and save from possible disappointments. Also try to put it up and down before you go just to know how much hustle and tools it will require. If you’re not really a tent person there’re other options like lodges, caravans or local B&B’s, however, keep in mind those are usually quite pricy and get sold out very quickly. Inflatable mattress is definitely a must and will save your spine from cold and rough ground.

Take enough changes of clothes in case you get drenched. Take good quality waterproof wellies and waterproof poncho (worth investing in as the cheaper ones will leak or rip as I’ve found out over the years!).

Joey

Bring prescriptions of your meds with you, keep tablets in the original box with the pharmacy label on, otherwise they may be confiscated by security.

Jenni

Get hydration pack, do super easy meals, get a dog-tag necklace with your medical info, always bring a cane or chair.

Charis

Start preparing a full week before you go! Bring ice packs everywhere and if there’s electricity available heating pad should come too!

Carolyn

Try not to over-pack (you want to travel light) but at the same time make sure you take enough things, especially when it comes to warm and waterproof clothes. We all know how great British summer can turn out to be, so ponchos and wellies are a must! Make sure your medication is organised, in original packaging and together with prescriptions. In general, try to make a list of things you might need if everything goes wrong (aka flare) and make sure you pack them.

Create an emergency plan ahead of time just in case, rest way before you need it, invite people to your space with pillows more than going out to others.

Charis

Pacing yourself is also important, even if you don’t feel like you need a break take one anyways, make sure to do some stretches. When you take long road trip, stop every hour or so for a little gentle yoga and to walk for a few minutes.

Carolyn

Plan what you want to do ahead of time and then evaluate how you are feeling on the day, and throughout the day to see if you can still do it – you don’t want to wear yourself out on the first day!

Jenni

Make a plan for your time at the festival. Roughly figure out what you want to do and see, but be realistic about it. Try to figure out the distances to: your campsite, the medical tent, the accessible campsite, stages, toilets and showers. It might seem quite straight forward but it’s good to know where’s what and how far when you actually need it. Reserve times for breaks and a wee bit of stretching, remember pacing is crucial and festival can be a very tiring experience. If you have to travel far to your festival, apply the same rules.

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Take care of your biologic drugs.

Keep it at the correct temperature during the journey and at your destination. You can buy special cooling bags, FRIO wallets and even travel fridges designed for this purpose. Make your you carry it in your hand luggage and bring along a copy of your prescription to show at Security if needed.

Ask for assistance.

Inform your travel agent, airlines and hotel about any necessary adjustments and help you may need during your journey. Even if you don’t feel like you need assistance, it can be so much easier to have someone carrying your bags around. In case of some major mess up with services, reserve extra time for procedures like going through the security check at the airport.

Use Give as You Live to buy a trip and anything needed for your travel.

A percentage of sales goes to NASS, help us help you!

Check your drugs.

Make sure you have enough of your medications together with a doctor’s note or prescription copies in case someone ask you about them. Try to keep it with you at all times rather than in a luggage that can get stolen or lost. When traveling abroad, check the legal status of your medications, especially codeine. The last thing you need is to end up in prison.

Get yourself the EHIC card.

European Health Insurance Card gives you the right to access state-provided healthcare during a temporary stay in another European Economic Area (EEA) country or Switzerland. It’s a pretty good backup plan for those travelling in Europe.

Watch what you eat and wash your hands.

Biologic therapy can lower your immune system response levels. This can make you more prone to food poisonings and infections. It might be a good idea to stay away from ‘authentic’ food markets and keep alcohol sanitizer with you at all times.

Get travel insurance.

This one is pretty obvious. Keep in mind accidents and medical emergencies can happen and you want to be covered.

Get vaccinated.

If you are on anti TNF therapy be careful about which vaccinations you have, as live vaccines are not recommended for people on biologic therapy.

Pick a right place to go.

Judge your capabilities and what you really want from your trip. It might be a good idea to ‘take’ your AS for a holiday as well. Think what will help your AS when you’re away. A visit to spa? Access to a pool? Warm weather? It’s your time to enjoy yourself so don’t forget to do that! If you planned everything ahead you should be able to just relax and have a great time.

The post Top 10 tips on travelling with ankylosing spondylitis appeared first on ASone.