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.

I have thought about doing one for a while, but never thought anyone would like to read it. However, it’s got to a point where there are so many thoughts in my head, it’s about time I got some of them down. This isn’t going to be some sort of inspirational post where I tell you all that I’ve overcome my illness and now I’m thriving, I am unfortunately very much still struggling. This is a bit like those infuriating autobiographies that sports people write even though they’re only two years into a professional career (unless you’re Ben Stokes, he can do whatever he likes). This is for me to air some anger and frustration, and maybe let people know that they’re not the only ones struggling.

For anyone reading this who doesn’t know what axial SpA (AS) is, it is a form of inflammatory arthritis that attacks the spine, pelvis, heel, eyes, bowels, and a load of other things. If this sounds horrendous to you, then that’s because it is, and it doesn’t stop there. If the inflammation remains uninterrupted, it wears away at the tendon attachments that you find attached to bone, and the healing process results in these flexible tendon attachments being replaced by calcium deposits, and can eventually lead to fusion of the spine and sacroiliac joints. Sound bad?

Inflammation of the front part of the eye, called anterior uveitis, can badly affect your vision if left untreated, and inflammatory bowel disease, from what I’ve heard, is probably the worst of them all. Fortunately, not everyone gets all the symptoms and comorbidities, and an early diagnosis can help prevent these things happen or lessen their impact if they do. But even an early diagnosis may not bring back the life you had previously.

So where did it all start for me? I had tendon problems in my ankle and behind my knee in my early teens, but they could have just been injuries. I also had something called reactive arthritis when I was 15, which caused my knee and wrist to swell up as a result of my immune system’s whacky response to food poisoning. This came back the following summer, but seemingly without a trigger.

After this, groin and back pain followed when I was 17, but it was minor, and it didn’t stop me from playing back to back hockey games on a Saturday. I was in the gym 3 times a week, doing mostly cardio, playing a lot of hockey, and playing in the 1XI at my local cricket club. I had a summer job, and then off to university.

I was mostly fine at university, other than a weird moment of horrific back pain whilst dancing to S Club 7 at freshers’ ball, which resulted in me throwing up from the pain (and alcohol) and fainting.

It took me 5 years to get my answer to this and I’m not sure it’s the one I wanted.

In my first year of uni, I somehow managed to get into the 1XI of the uni cricket team, and it was probably the most fun I have ever had playing sport; I am still gutted that a shoulder injury stopped me doing this in my 2nd and 3rd year. I picked up hockey again in my 3rd year and loved it. As a 20-year-old, I was normal, active and sociable.

Even when my groin and back pain returned in 2017/18, I didn’t take any medication. I just thought I was weak, so saw multiple physios and kept exercising.

Eventually I got fit again as I graduated and started playing cricket again in June 2018. The next few months saw improvements in my strength and mobility. The odd flare up followed me, but a combination of gym, swimming and pilates got me to the end of 2018 in good shape. However, while back in Southampton visiting my girlfriend in February 2019, I woke up at 3am in agony. I didn’t feel anything the night before, the pain in my back was sudden and agonising. I spent about an hour writhing around on the floor before I had to wake up my poor girlfriend to ask where the painkillers were.

I struggled for another 3-4 days, before being put on naproxen, which immediately made me feel normal again. I haven’t been off drugs since this point.

The naproxen worked for a while, but just as I was moving to Didcot to start my new job, it got worse again. I had an MRI scan privately about a month before then, which showed some minor disc issues, which became the problem for a couple of months – another misdiagnosis to add to the list.

The pain got worse and worse as I exercised less and less, until one weekend the pain subsided and suddenly I had a very red eye. It was extremely painful, but thinking it was just an eye infection, I left it for a day.

It was only when I woke up and my vision was blurry that I rushed off to the eye hospital.

The eye doctor took one look at my medical history and questioned why no one had picked up on my back pain before. An afternoon of stinging eye drops and an eye injection where the anaesthetic didn’t work followed, and I was sent on my merry way with steroid eye drops.

However, my eye got worse later in the week, and I ended up spending 3 days and nights in hospital having hourly eye drops through the night (apologies to the nursing staff for having to put up with me, I was very tired). To top this all off, I was discharged the day before my birthday. I was completely drained, and the combination of severe inflammation and lack of sleep left me with a complete loss of appetite and incredible fatigue for the next week. Fortunately, my back pain subsided, and the cricket world cup was on. I was signed off work for an extra two weeks, so I had the pleasure of sitting in my parents’ living room watching cricket. It was heaven.

With axial SpA(AS), you know before you know.

Anyway, there I was, returning to my office job after 3 weeks off, life completely turned upside down, flashes and floaters in my eye from the trauma, and expected to go on living life as normal. It was surreal. Luckily, I only had to wait another month for a rheumatology appointment, where I was told what AS is. When someone explains what axial SpA (AS) is, all your symptoms start to make sense. Axial SpA (AS) symptoms get better with movement, which explained how in my 4^th year of university, I could go from being unable to put my socks on in the morning to running around a hockey pitch in the evening. It explains why 20 minutes of high intensity training on an exercise bike made me feel better, and why I felt rubbish in the mornings as well as after rest.

Fortunately, my medication was changed to a different anti-inflammatory quickly, and overnight the pain almost disappeared – it was life changing.

I started doing strength training again, albeit in very small steps, and swimming became even easier. I had some pain in my groin and neck/shoulders, but this was well managed with swimming and I was waking up pretty much pain free. I was put on an immunosuppressant in November 2019 in order to get more of the pain to subside, and to hopefully prevent the uveitis returning. I was struggling with fatigue for a month or so, and some stomach pain which turned out to be stress-related IBS, but the pain had almost vanished, so I was happy.

However, 2 weeks before Christmas I had a major flare up. I tried exercising through it with running and swimming, but this level of pain was horrendous, and I only just about made it through Christmas, with a combination of exercise and hot water bottles. To be honest, I am only marginally better now than I was in January. I’m probably fitter and stronger, but the pain is at a similar level and my mental health is worse. I came off the first immunosuppressant in March and moved onto a different one. These drugs are relatively new and have revolutionised the treatment of many different inflammatory conditions, but not everyone responds to them, including me. Well, when I say don’t work, they probably work a bit, but I still can’t run and struggle to lift things.

Lockdown was immensely tough. But, then again, it was rubbish for everyone, so I won’t say too much about it. Just please wear a mask. And wear the thing properly.

I am now 15 months into my diagnosis. Honestly, I feel worse than I did this time last year. I thought it would all be up from there. one of the first things I asked about at my first appointment was about playing sport. I was ecstatic when I was told that I still had a chance if the treatment worked. By October 2019, I thought I genuinely thought I would be able to feel relatively normal again. But right now, I feel further away from it than I think I ever have. Axial SpA is relentless, and when it gives you a good day, it will just as easily make the next few weeks hell.

I have tried swimming, yoga, strengthening, running, pilates, somatics, the Wim Hof method, and supplements. I even tried not drinking for two months. I have been on 4 different types of medication, and it is very hard to see the light at the end of the tunnel, even if my rheumatologist tells me it’s there. I was never the most confident person, but arthritis destroys any confidence and self-esteem I once had. Its debilitating. It weaves itself into every part of your life and tries to tear it apart.

I am better than when I was first diagnosed, but I am nowhere near where I want to be.

Maybe I just need to accept that this is my life now. Unfortunately, I hate being told what I can and can’t do, and it’s the sheer stubbornness within me that keeps me going. That, and the wonderful rheumatologists, the two physios that have helped me (thank you Dan and Rachel), Zoe Clark the osteopath who has been working with NASS during the pandemic, and Jamie Boder who has been helping me with yoga (I am practicing every day I promise!). I miss sport very much. It was somewhat bearable when no one else could play, as it meant they could join me in the misery. My love of cricket is inexplainable, as it is probably one of the worst games to play, especially when you pay to play game where you could end up spending you whole Saturday afternoon doing nothing. Its bonkers, but I love it and miss it.

Arthritis doesn’t get the coverage it should. I’m not asking for it to be prioritised above other illnesses, but some consideration would be nice. There are estimated to be over 10 million cases of arthritis in the UK, encompassing 100 different variations. Osteoarthritis, Rheumatoid Arthritis and Gout are the most common. Axial SpA (AS) affects roughly 220,000 people in the UK, but I sometimes wonder if people are being missed because no-one has ever heard of it. Its more common that Multiple Sclerosis and Parkinson’s combined.

One huge misconception about arthritis is that it only affects old people.

Two thirds of people with arthritis are under 65, and even people in their 20s are diagnosed with osteoarthritis. There are also 15000 children in the UK with arthritis. That’s 15000 children growing up in constant pain – it’s all they know. And yes, I know there are other children out there with disabilities which also need attention and funding for research, but that doesn’t mean arthritis doesn’t deserve it too. I’m not asking people to understand what this is like, how could you? It’s an invisible illness which can cause an unimaginable amount of pain. To others, I’m just the weirdo crying on the bus to work for no reason.

The advances in treatment and research over the last two decades gives hope, and the level of care I have had from the NHS is brilliant. NASS is doing some wonderful work in trying to get the delay to diagnosis from 8.5 years to 1 year and improve the level of care across the whole of the NHS through education and collaboration. There are some wonderful people out there helping, and the next few years could see great advances in treatment. I don’t know if there will be a cure, but obviously if there is one, hit me up. I just hope it’s not too late for me.

Mark is a mechanical design engineer at the Central Laser Facility, who loves cricket and supports West Ham. You can follow him on twitter here.

The post How arthritis turned my life upside down appeared first on ASone.

Hope you’re all safe and sound during this time.

My name is Dasha and I’m pretty new to this platform and AS (diagnosed in Jan 2020). It’s been a pretty scary and emotional diagnosis but I’m much better now and decided to start vlogging about my experience to build a community. I’m also looking for a few people to interview in the near future to make this fun and share experiences/tips.

Here’s my first vlog – I’d be keen to hear your thoughts/feedback:

Best,

Dash

The post Vlogging about AS in my 20s appeared first on ASone.

I was invited along with a handful of other sufferers of axial SpA (AS). The first thing I noticed was that I was the youngest person in the room and had been living with my arthritis for a lot less time than the rest of the group. I’ll be honest I was worried about getting side-lined because of my age, but I was happy to be proven wrong and we were all very respectful of one another and listened to what everyone had to say.

A part of me thought I maybe shouldn’t have been there, because whilst there was a slight delay in my diagnosis, it’s nothing compared to what these people have been through.

This made me even more aware of how lucky I have been to be diagnosed so quickly, because there is more knowledge and research and tests available now compared to when some of the group first started showing symptoms. Saying that, awareness and knowledge is still something we talked about as a reason for delay.

Axial SpA is not a well-known condition. There isn’t a lot of awareness around it. Therefore, a person could have some of the symptoms and not know to even think about the possibility of axial SpA until more appear and things worsen. It’s not just about the patient’s knowledge and judgement, but also that of some medical practitioners. Again, more is available now than in previous years, but axial SpA is a complicated condition and can get mistaken for other conditions and from listening to the discussion, a common one is fibromyalgia. (Note: there are a number of diseases that can develop alongside axial SpA, which creates even more complications when trying to reach a diagnosis).

I’m not sure whether this comes under a lack of knowledge and judgement or whether it’s a pride thing as a medical professional (I’d like to be clear: I’m not grouping all medical professionals together here. I have had some bad experiences along the way, but I know only a small amount are actually like this). In some cases, there is genuine resistance to the idea that a patient might have axial SpA, leading a patient to seek a second opinion. This behaviour has in the past led to delay in diagnosis. Patient pride is an important aspect in the length of the journey to diagnosis. With symptoms such as aching, stiffness and fatigue; one might just put it down to a tough week and think that everyone gets like that, which isn’t necessarily wrong, but when it happens regularly and gets severe it’s harder to ignore no matter how much you might want to pretend that you’re like everyone else.

We think we’re strong for pushing through and ignoring things, but it’s not weak to ask for help.

In terms of my own road to diagnosis I had one symptom for a while at the beginning and I saw a GP who referred eventually referred me to a foot specialist. The cause of this symptom was thought to be (and technically rightly so) due to an underlying condition and my working situation. I developed achilles tendonitis in my left foot. I have slightly too much heel bone in that foot and at the time I was working in a pub where the majority of the pint glasses I needed to serve drinks in were on a high shelf that caused me to be regularly moving up and down on my tip toes. The thought was that this regularly repeated movement was causing the heel bone to rub against and damage my achilles tendon. The treatment that I received was shockwave therapy on the back of my heel to re-injure the tendon to stimulate healing (yes that does sound insane).

This worked for a short while until my limp returned (my tendon was so inflamed due to the axial SpA that it was just rubbing against the bone) and inflammation throughout my body caused pain and restricted movement in my arms, neck, back, legs, feet (just all over). I was then sent (by a different GP) for X-rays and blood tests and it was only because I had inflammatory markers in my bloods the axial SpA (at the time referred to as non-radiographic ankylosing spondylitis) was even mentioned as a possible diagnosis.

I was told twice that I probably had axial SpA, but neither the GP nor the consultant I saw could actually diagnose me.

It wasn’t until I met my trial doctor that I got a proper diagnosis (I also went for an MRI that lit up like a Christmas tree showing inflammation). Anyway, the point that I’m trying to make is that the way the symptoms present themselves can actually delay diagnosis, either because they get treated individually instead of being considered part of something bigger, or they lead to a misdiagnosis.

The discussion was very interesting, and it was my first time properly meeting other people with axial SpA. I found it beneficial getting to listen to other patients and their experiences not only with diagnosis, but how they live with it. It made me aware of my own naivety regarding the condition and caused me to think about how I should take care of myself post drug trial and as I get older. I was happy to get involved in the discussion and I hope we were all able to contribute to helping cases of axial SpA diagnosed and appropriately treated quicker. I hope I can be a part of future discussions about axial SpA and that I can be of help to other sufferers, particularly those around my age or younger. It is scary and confusing and I hope I can provide some understanding as to why their body might not be working the same as everyone else’s their age and how to deal with that information (something I’m still learning to do myself).

By Jack Posnett

The post Getting Involved: Discussing Diagnosis Delays appeared first on ASone.

At the age of 19 I developed and was diagnosed with axial spondyloarthritis (axial SpA). I managed to get diagnosed fairly quickly, but it was not obvious in the beginning. I woke up one morning, had a golf ball like swelling on the back of my left foot and could not walk around without limping. I went to my GP who told me I had Achilles tendonitis. It persisted, I went to a foot specialist and long story short I underwent some shockwave therapy on my heel. This involved using a tiny jackhammer like device on my heel that was supposed to re-injure the tendon to stimulate healing (or something along those lines, this was a while ago now and I am not a medical professional). So, a few of these sessions and some physiotherapy later and my limp was gone. Things were looking up.

However, things soon took a turn for the worse. Not only did my limp return, I developed constant pain in my legs, feet, shoulders, neck and back. I became very weak, was tired all the time and lost a lot of mobility. The diagnosis was axial spondyloarthritis. This is an inflammatory form of spinal arthritis, but it can affect the entire body. The inflammation is caused, as I understand, by my immune system going overboard and so basically my body is attacking itself. At my worst; I had been through a range of anti-inflammatory tablets that weren’t doing anything to help, I could barely walk a few hundred yards at a time and I could not stand up straight out of a chair properly. Sleeping was difficult due to the pain and when the sun came up getting out of bed was a struggle because of morning stiffness.

At this point I’ve talked about the pain and some of the physical impacts. Axial SpA is unfortunately a lot more than that. It is life altering and it affects your mental health as well as physical. Before my arthritis developed, I was in a pretty good place and was happy with my development and who I was as a person. I was confident, independent and physically active. My main hobbies were tap dancing and trampolining. Trampolining played a huge part of my life for twelve years and I had coaching and judging qualifications. At the time it developed I was on a gap year which involved working part time at a pub in my home town which I really enjoyed and I was due to head off to University September 2016. However, as things got progressively worse, I lost more and more of myself. I had to quit work, due to how the tendons in my feet are affected I can’t go back to trampolining without getting my limp back and I came to rely on my parents more than I wanted to. My confidence was shot and replaced with fear and I just lost all sense of self. I didn’t know what I was going to do or whether I’d make it to University. I’ll never forget the moment I was in so much pain I cried to my parents just begging to be a “normal person” again. I was anxious, depressed and I felt broken. I am ashamed to say that for a time I turned to alcohol to cope because my anti-inflammatory tablets weren’t working and when I was drunk there was no pain and I could move around easier.

Please drink responsibly, don’t use alcohol as a coping mechanism. It definitely creates more problems than you think it solves.

One day I got a letter in the post saying I had an appointment at a hospital I didn’t know with a doctor whose name I didn’t recognise. I didn’t think much of it. I was in and out of GP appointments and thought I had just been referred to be told the same things I had been told a billion times only by someone else. It wasn’t until I got there that my mum told me that she and my dad had been writing to doctors in search of treatment for me and that my name had been passed to the doctor I was about to see. He was specialist in arthritis and involved in drug trials. So, I met him, we talked trials and I was eligible for one. The trial started in January of 2017. I started University in September 2016. My first semester was hell; the pain and fatigue were getting worse, I slept a lot and I was very stuck in my shell, but I pushed through, did my work and managed to make friends and socialise a bit, because I knew I just had to make it to January and things would start to get better. When the trial started things turned around. Within five weeks I lost my limp and could move around a lot better. I could keep up. I came out of my shell and got to know people better.

There were still down times every now and then, but they were nothing compared to the lowest points before the trial and I made it through my degree to graduate July 2019.

As I write this it’s nearly 2020, by which point I will have been on the trial for roughly three years. The trial ends in 2021, but I should still receive the drug after. The point of the trial is to get it licensed for use in axial SpA cases and to make it easily accessible to sufferers. The drug is an immunosuppressant that is designed to stop my immune system from going crazy (very medical term) and causing inflammation. I inject this into myself once a month as well as taking a weaker anti-inflammatory tablet daily for extra support, although I believe I’ll reach a point where I won’t need tablets. Despite being immunosuppressed, I do not feel that I get ill more than anyone else. I am not in constant pain anymore, but fatigue can still be an issue, my physical strength changes a lot and I’ll still never bounce again; I can deal a lot better with those though compared to the pain I used to be in.

The trial has stopped the pain and given me my mobility back. For the most part I am physically quite healthy. However, I feel that I still have a long way to go. University was a distraction but coming out of it I have realised I need to put some attention into actually taking care of myself, both physically and mentally. Something a lot of people with axial SpA that are managing their symptoms stress is the importance of is staying active and I would say the same. When I am exercising regularly, I am at my best and any long breaks can set me back quite a bit. I try to work out at the gym, but I see that as something I have to do rather than actually wanting to do it. I would advise finding a form of exercise that you consider a hobby, that way you’re more likely to do it frequently and stick to it because you enjoy it. I myself enjoy indoor climbing/bouldering, would like to get back into tap dancing, as long as I do not run the risk of hurting my feet and want to try yoga to help with my flexibility. Fatigue is something I am still trying to manage, although I think it is a case of accepting and understanding my limits and knowing when I need to take a step back and breathe. I used to be such an on-the-go person and so learning to slow down takes some getting used to. I wear raised inserts in my shoes to ease the strain on the tendons in my feet which has made walking around for long periods of time a lot easier.

I don’t think I fully comprehended the impact all of this has had on my mental health until recently. I can no longer partake in the sport I put years of my life into and loved. That sucks. That really sucks and instead of dealing with that I ignored it and now its years later and to be honest with you it still hurts. I’m not who I was before arthritis. I know people change as they go through personal development, but I feel like I missed out on some of that and ended up losing myself, and I don’t think I ever worked at creating and building myself back up again beyond functioning at University. Now I don’t think I could honestly tell you much about myself and that has created a lot of anxiety. I know I want to get a job that will take me out of my hometown and to a city such as Manchester or Leeds, but what that job is, what that career is, I don’t know. In terms of trying to look after my mental health I like to meditate; not silent meditation though I like to play music through my headphones and it actually helps clear my head of unwanted noise. I know having a physical activity as a hobby again would help, not that the gym doesn’t make me feel a little better, it’s just the only option I have around me and I find it hard to enjoy. My friends help a lot. Yeah, they listen if I need to talk about any of this but it’s more just spending time with them or messaging each other, it makes me feel more human and reminds me my arthritis isn’t going to rule my life. I have seen a few counsellors and therapists, though I never really clicked with any of them, but it’s not something I’m ruling out. I’m willing to try again but it’s not for everyone and if it’s not for me I’ll find something that is. Reading other people’s stories has helped a lot. Seeing how they’re dealing with their symptoms and what they’re achieving has shown me that I can do the same, but it’s not something that can happen overnight.

Writing this is doing some good too, it feels like some weight has been lifted. It’s going to take time and effort, but I can create the person I want to be.

I consider myself incredibly lucky. I was diagnosed quickly. I have not had to deal with bone fusing.

I am on a drug trial. I’m sure anti-inflammatory tablets have been helpful to some, but I know there are a lot of people that they don’t provide any relief for. People can go through so many misdiagnoses, so many appointments and get prescribed so many different things before they will be allowed to try anything that is actually remotely strong enough to help them. I am so grateful to be on this trial, but it does sadden me knowing there are lots of sufferers who are not receiving the right treatment and are in constant pain. I am proof that this drug works for patients with axial SpA and I hope that once this trial is over people that need it will have access to it.

I know this has been a long one, but the best way for me to tell this properly was all at once. If it helps at least one person, it will have done its job. I might come back to post about some more specific topics in detail like how I stay active, fatigue free and how I keep up with people or how I managed at University. I just want to thank you for reading and allowing me to share my story with you. If you’re suffering from axial SpA, I want you to know that you aren’t alone and that there are resources and options out there. Please take a look at the NASS/ASone websites and social media pages, they contain so much useful information and links to some amazing blog posts.

P.S. I was worried this would get a little heavy, so the picture I chose to go with it is of me being a goof while I wait for an MRI scan. Enjoy.

Jack is 22 and can be found @jackposnett 

The post Time to Talk: My Axial SpA (AS) Journey – Development, where I am now and what I need to do to keep moving forward appeared first on ASone.

The sense of dread at heading into the packed gym and being judged for what I could and couldn’t do was overwhelming. This was a very unfamiliar feeling for me as I have always felt at home in a gym.

I am an ex-military, qualified personal trainer and now an Osteopath who teaches exercise rehab, yet I felt frightened about going into the gym. I was having a high pain day and didn’t know if I would injure myself or cause more pain. Worse still see someone I knew and have to take the knock to my ego or repeat the same old conversation and explanation. Since my axial SpA (AS) has worsened my body has changed a lot, I have lost muscle and put on some fat, had immense fatigue and really didn’t want to do much. With some new medication and self-care I’m starting to get back to fitness but with slightly altered expectations.

Back pain is not new to me having had it start in my early teens, however my axial SpA (AS) diagnosis is new and my progressively worsening physical symptoms and fatigue have made training hard, I fully understand how important exercise is for helping axial SpA (AS) and I have encouraged people to do it for years, however, being on the other side and feeling like your whole body hurts and having someone say “just try some exercise” is really not helpful!

So cut yourself some slack, if you struggle or are having a day where you just can’t face it that’s OK.

Its my job and I have struggled, I have lost fitness and muscle but found ways to adapt my training to suit what my body needs. Some days I just go for a light swim while on others I can still lift weights. I have found modifying exercises and using machines to be more helpful for me and use the cable machines to adjust the position and keep my joints happy. I also wear a weightlifting belt and wrist and knee wraps which has made a big difference to my pain when training.

Some days I train like a beast, others I’m out of breath before I have even gotten in the gym. So be kinder to yourself, everyone struggles. Taking a friend for support or finding a way to exercise that you enjoy may really help or even try a home workout or a nice walk.

It will get easier on some days so do what you can when you can, and If you’re having a bad day it’s totally acceptable to listen to your body and rest. It’s a great feeling putting my walking stick down and picking up a massive dumbbell, even if it gets a few funny looks, but I have realized that’s not my problem.

Written by Andrew MacMillan who is @andrew_osteopath on instagram

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Imagine finally falling asleep, but waking up every hour to switch what side you’re laying on because your hips ache and your knee is going numb.

Imagine waking up in the morning in so much numb pain that you don’t want to get out of bed but know that you have to make it to work in an hour and don’t have time to waste on feeling pain.

Imagine getting a glass of water and taking your pain med, not sure if it will work today or if you are going to suffer but not be able to take anything else because your pain med is supposed to work for 24 hours.

Imagine wanting to grab breakfast before work but not being able to eat the same things as other people so you can’t go out not knowing what there will be to buy at the store.

Imagine going to work and spending all day walking, sitting, standing, engaging, smiling, and wishing you could sit down for just five minutes.

Imagine going to the bathroom and your thighs sting when you squat over the toilet.

Imagine all your coworkers planning to go out to after work and you want to go, but you don’t want to because you don’t know if your low pain level will last through an evening out or if your pain meds will wear off early.

Imagine waking up everyday and going through the same pattern of not wanting to get up, getting up and taking medicine, not being able to eat what everyone else does, not knowing how each movement will affect you through the day, experiencing pain through the simplest task (like peeing), and then not having a social life because your life is a guessing game every day and night.

Imagine that.

That is a day in the life- of a girl with Ankylosing Spondylitis.

That is a day in my life.

This great story was submitted anonymously. Please get in touch with us if you’d like to have it credited to you! 

The post A Day in the Life – of a girl with A.S. appeared first on ASone.

2018 has been rather unreal for me. January started when I developed uveitis after being told oddly I had conjunctivitis! Following the correct assessment, equaled three months of drops in both eyes as my first instance of uveitis decided it would be bilateral!

I also run my own business, so this was a challenge having drops every 3 hours whilst attempting to reply to emails!! I was fortunate the doctor I saw was very thorough and she requested numerous blood tests intrigued by my condition. Two months later I got my appointment letter through for a Rheumatology assessment and another appointment letter came for an MRI.

I couldn’t make it as I was enjoying sun, sea and sangria in Jamaica at the time but rescheduled and within six weeks of my first appointment I was diagnosed with AS. My first thought wasn’t my life is about to change forever, it was – how would this affect my holidays? It was like a jigsaw puzzle, so many things fell into place, why this happened, why had that happened.

I had struggled with depression and anxiety for almost 8 years and the prognosis was I had AS/AS Symptoms for up to 10 years, another fitting piece to my puzzle.

At the time I was in a relationship with someone for 5 years, we had our rocky patches like most and I suppose this was the ultimate test of our survival. Unfortunately, I am very much alone relationship-wise when it comes to my AS now and although I can write things down that would bore people for hours, I don’t seem to have anyone who can understand what I am going through, that can understand the difference between AS and a bad back, how this will change things for possibly the rest of my life.

I called this blog Rainbows and Stars because I love stars, not only do they tell a thousand stories, they look pretty and it’s very romantic to sit underneath them. The universe is our world and galaxy (chocolate) just melts in your mouth – what’s not to like?! As for rainbows, every since I was little I always believed there was a pot of gold at the end of the rainbow. No amount of money can change someone’s life when diagnosed with AS, however, if they find that person who can accept them warts and all, can talk to them about absolutely anything whether it be AS related or not, they can sense when you are having a bad day or flare and you experience the most amazing things with them by your side…you have found your pot of gold

I am about to start my Anti TNF medication within the next two weeks…another experience and challenge! But for now….I am off to look for more rainbows!!

This great story was submitted anonymously. Please get in touch with us if you’d like to have it credited to you! 

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