World AS Day

Saturday May 4th is World Ankylosing Spondylitis (AS) Day. To mark the occasion I thought I'd post a brief summary of AS and its related conditions.

Many people have heard of Rheumatoid Arthritis (RA), but the rather grandly named "Seronegative Spondyloarthropathies" are less well known. "Seronegative" means a lack of positive blood results, particularly absence of high rheumatoid factor which characterises RA. "Spondylo-" means primarily affecting the spine, referring to the predominant site of pain and inflammation in these conditions. And "-arthropathy / -arthritis" means problems with or inflammation of the joints.

Collectively, AS and its related conditions are referred to as "spondyloarthropathies" or "spondyloarthritides" (the plural of "spondyloarthritis"). There are several different types of arthritis of the spine, each with their own distinctive features, but they all generally share the following common symptoms:

• lack of definitive blood test results (seronegative)
• association with the gene HLA-B27.
• inflammation of the following sites:

1. spine and sacroiliac joints (the joints that connect the base of the spine to the pelvis). SYMPTOMS: pain and stiffness in the buttocks, back and neck.
2. large joints of the legs and arms (less common) e.g. hips, knees, shoulders, elbows. SYMPTOMS: pain, stiffness and swelling in affected joints.
3. tendons which connect muscle to bone. This is commonly known as enthesitis. SYMPTOMS: pain in the affected tendon, often the achilles heel and base of foot.

I have produced a pretty venn diagram to show the different types of spondyloarthritis (because an informative post isn't the same without a coloured visual aid!) Click on the picture to enlarge it.















To read more, please visit the Spondylitis Association of America website: http://www.spondylitis.org/about/

Please take the time to learn more about this group of little-known but debilitating conditions, and pass on this info to your friends! And thank you for reading to the end :-)

Benefit shenanigans

In the last month or so I have been plucking up the courage to dive into the murky depths of benefit claims, looking particularly at claiming for disability benefits. The experience is proving to be baffling and at times upsetting. I wanted to provide a first-hand account of my experiences which I hope will add an individual perspective to the current debates about how much help the state should provide to its most vulnerable members.

My decision to claim for benefits has not been an easy one. I have been brought up in a society and culture which takes pride in individuals "standing on their own two feet" (even if that is with the aid of walking sticks!). So to claim money makes me feel uncomfortable; the word "scrounger" echoed in my mind as I filled in the form.

My application is being considered against the wider backdrop of cuts in benefits and a spotlight which is being shone on "fake disability" claimants. I would never condone pretending to have a disability when you don't (why would you use sticks if you didn't have to?) but I think the perception now is that anyone who claims to be disabled must be faking it. Especially if their disability is a hidden one.

Take my neighbour as an example. She has chronic back pain, made intractable by a botched operation, and is in almost constant pain. She can walk, but not very far. She also has a disabled blue badge, and has been a victim of verbal abuse: "What do you have one of those for when you can walk?" So speaks the "expert" member of the general public.

And the suggestion that the shift in public perception about disabled people has caused an increase of anti-disability sentiment is not just anecdotal. This article from Huffington Post reports a rise in disability hate crimes and questions whether there could be a causal link:

http://www.huffingtonpost.co.uk/2012/09/13/hate-crimes-against-disabled-people-acpo-police_n_1880733.html

Food for thought.

As for me, this claim has brought to light my own insecurities about how I view my condition. Filling in a form which quantifies your disability is actually very difficult, especially when the condition is as variable as mine is. But it's also more than a little alarming to read back what you've written and realise  this is what I live with every day. When you are soldiering on through day-to-day difficulties you can brush aside the reality to some extent, but when you are faced with a written measure of how far you can walk without severe discomfort, the whole thing becomes much more real.

Watch this space for the verdict by the Benefits Office...

Perching Stools

When I was an inpatient in "the Min" (RNHRD in Bath) I was assessed by an Occupational Therapist who suggested a perching stool for activities like cooking, ironing etc. I find standing for long periods to do heavy chores difficult, so this adaptation suits me very well.

Wiltshire adult social services sorted out the stool for me (I got a bit of a shock when they first phoned, as I had no idea why I was being called by social services!) I was looked after by a lovely lady who obviously chain-smoked about 40-a-day judging by her hoarse, throaty voice. You don't have to be trained as an SLT to notice these things, but it helps... :-)

Anyway, the stool arrived, and my first reaction was...BROWN?! Seriously? You've already got the issue of the ambiguous terminology ("stool" always raises a few silent titters in my mind, but then maybe I'm just childish). But to have a stool that colour would test the humour of even the most staid of individuals.

On a more serious note, there are aesthetic considerations; my mum had made about 6 comments within the first hour about how ugly it was (I agreed with her) and I knew if I didn't brighten it up it would be consigned to the loft along with my ex-boyfriend's crutches and the bleached whalebones (long story).

So, here's my before and after...using curtain material, elastic and my old-fashioned Singer sewing machine.

 

 

BEFORE...

AFTER

Much brighter and now I actually might use it for its intended purpose!

 

Welcome to Inflammatory Comments!

If you're here searching for controvertial remarks, press the back browser...

...because my Inflammatory Comments blog is not about being making outrageous political statements; it's about the ups and downs, privileges and pitfalls of living with Inflammatory Arthritis. Hence Inflammatory Comments! (I think I may have laboured this pun enough now).

I was diagnosed with undifferentiated spondyloarthritis (what a mouthful) about a month ago (March 2013). This was not, however, the beginning of the story, but felt like the end of a long journey battling to be taken seriously.

Before I go any further, this is not going to be a rant against all health professionals everywhere, or even specific people who have created various barriers along the road to diagnosis. I feel it's so easy to become bitter and angry about the way one is treated, which is very understandable, but at the end of the day, doctors, nurses, physios, SLTs, OTs and everyone else in the NHS are just people who make mistakes and miss things. So I want this blog to give frank details of the difficulties I've faced over the last few years, but without descending into bitter ranting.

My first experience of chronic illness began back in late 2006. I woke up one morning with a bit of a stiff neck. I thought I'd just slept awkwardly and shrugged it off. But weeks later all my large joints (hips, shoulders, knees, elbows, back and neck) felt painful and I felt very unwell. I was an undergraduate at the time, so struggled to the end of term, but was admitted to hospital that December.

After further testing and another hospital admission I was given a provisional diagnosis of Reactive Arthritis. I had infrequent physio but was basically left to deal with it and hope it got better. I took a year out of university, and as I gradually improved over the next few years I was able to return to university and eventually complete my degree in 2009.

I was pain-free for a while and thought I was rid of any arthritic problems (Reactive Arthritis is usually self-limiting; see here for further info:

http://www.arthritisresearchuk.org/arthritis-information/conditions/reactive-arthritis.aspx)

However, since November 2011 I have been experiencing gradually worsening back, hip and knee pain. The back pain has been my most significant problem. It has the following features:

• slow onset (I didn't wake up with a sprain one morning, I just noticed a gradually stiffened feeling in the morning over several weeks)
• relieved by exercise and made worse by rest. This was strange for me at first, because it was the reverse of how my reactive arthritis had behaved.
• pain at night (waking up at around 3am and not being able to get back to sleep).

It seems obvious when written like this that I meet all of the criteria for suspected inflammatory back pain, as opposed to mechanical problems (which is a much more common cause of chronic lower back pain). But these things are easy with hindsight, and even with such clear-cut symptoms, inflammatory back pain is notoriously difficult to diagnose (listen to this podcast for further discussion of diagnostic issues in spondylitis: http://nass.co.uk/about-as/getting-my-diagnosis/difficulties-in-diagnosising-as/)

I had various scans, but to no avail. It appears that in the early stages it often doesn't show up on x-rays or even MRIs. This leads to a mis-match between symptoms and scans. "Old-fashioned" doctors who were trained to diagnose based on clinical rather than radiographic criteria were happy enough to give me a label of suspected spondylitis, but others would dismiss my symptoms because there was no corroborating evidence.

Eventually, I asked my GP to refer me to specialist team at the Royal National Hospital for Rheumatic Diseases in Bath (known as "the Mineral Water Hospital" or "the Min" for short). There I was given a provisional diagnosis of undifferentiated spondyloarthritis and, most importantly, lots of effective treatment during an inpatient stay. I am now under their care and will continue to see the specialists regularly.

So, that's my story. If it reads more like a medical history than a blog post, apologies! The ongoing purpose of this blog will be to post (hopefully shorter!) brief comments on my day-to-day experiences of being a young person living with long-term pain and stiffness in my back. I hope it helps others in similar positions to feel less alone, and that it provides an insight into the difficulties that young disabled people face.