The eagle-eyed amongst you will notice that my blog has changed. In place of a spine in the background, there is now a rather attractive image of the human digestive tract (believe me, there were plenty worse I could have chosen from!) Also, my strapline is different. This is because a new element has been added to my already complex health picture: Inflammatory Bowel Disease.
Most people, myself included, would never think to connect digestive system pathology with arthritis. The two conditions seem completely unrelated. In fact, how they are related is still something of a mystery, but what is known for sure is that approximately 20% of people with Inflammatory Bowel Disease also display some form of arthritis, which is often in the form of spondylitis (arthritis of the spine). There is a good summary of the condition to be found here:
http://www.healthline.com/health-slideshow/enteropathic-arthritis#1
My personal story is that recently I have been experiencing severe diarrhoea, abdominal pain and weight loss, which eventually culminated in an admission to the Royal London Hospital for a week in mid-December. Although the diagnosis is as yet unconfirmed, it is most likely to be Crohn's Disease, one of the two main types of IBD which can affect any part of the digestive tract. Mine appears to be in my small and large bowel, which as you might expect has caused a lot of difficulty in absorbing nutrients from food. The gastroenterologists have treated the inflammation aggressively with steroids, which appears to have helped; I am now waiting to hear as to the confirmation of the diagnosis and the extent of the inflammation via biopsies and scans undertaken during my time in hospital.
You might think that all of this is yet another blow to my health situation. It is indeed a lot to take in, and there are still many uncertainties with regards the disease extent and severity. But in fact, I had been warned by my rheumatologist in Bath that something like this might happen. He looked at my family history of Crohn's and the arthritis with which I presented to him and joined the dots correctly. I am almost looking forward to walking into my outpatient's appointment with him in January and telling him the news - it appeals to my Dr. House-like sense of diagnostic completion!
For now, this is a brief update post in between resting and Christmas festivities. In the future, I am hoping to write more on my blog about my experiences in hospital, living with IBD and the balancing act required to treat both Crohn's and the associated arthritis. For now, I would encourage you to read and learn more about IBD via the following website: www.nacc.org.uk. Perhaps due to British squeamishness about all-things toilet-related, IBD seems to me to be an under-recognised condition which is viewed as something of an embarrassment. I want to raise the profile of my newly-diagnosed condition and thereby hopefully help people understand what it is like to live with IBD, thus hopefully improving attitudes to those who suffer from Crohn's or Ulcerative Colitis.
But in the meantime, have a Wonderful Christmas! And don't eat too much :-)
Monday 23 December 2013
Tuesday 17 September 2013
Transport Dilemmas
Every year, like the inevitable turning of the leaves, darkening of the evenings and cooling of the temperature, comes the return of vast numbers of students to London after their summer break. This year, I was part of the mass Exodus, although my experience of the Autumn return has been somewhat different.
For a start, I did not simply go home to enjoy mum's cooking and Sky TV (though these were undoubted benefits). I went home partly to work in schools local to my parents' home, but also to recover having been newly diagnosed with spinal arthritis. My time at home was an ideal opportunity to develop good habits in terms of physiotherapy and pacing in preparation for return to the frenetic London life.
And it is frenetic. I don't think I'd realised before how physically and mentally draining it is to live here, and dealing with a chronic condition only accentuates this. It has been since coming back to London and comparing life here with life at home that I have come to realise this stark contrast. So here are some of my reflections. They form part of a wider series of posts that I hope to be writing in the coming months, outlining everyday dilemmas that people with chronic conditions face. Some of them may seem trivial, but they have been my constant companions recently and so I thought it would be useful to reflect on some of them.
This post will focus on transport. Now Londoners are never shy of complaining about the tube / buses / cars / cyclists / whatever other mode of transport happens to be subject to their disapproving scrutiny. But there are difficulties with transport that a traveller can face beyond the hazards of signal failures and leaves on the line (which would be impressive on the underground).
1) My transport dilemmas begin before I leave the house. The first question is: do I walk to the station nearby or do I get a bus from outside the door to a different station? Both have their positives and negatives. Walking is good for my back, but bad for my knees, especially on hard London pavements. Walking is also quicker (strangely) as I use a route which gets me to work faster than the bus option. I have to weigh up whether my knees will last the 10-minute walk given their recent grumbling / the weight of my rucksack / the speed at which I need to walk in order to be on time.
2) Do I take my sticks? You might think it was an easy decision based purely on whether I need them to walk. Not so. Because depending on the time at which I wish to travel, I may not get a seat without them. So if I do not take them and then don't get a seat, I will paradoxically be more likely to need them to support me when I'm standing on the rocking train. Unlike those with a "baby on board", I do not have the convenience of being able to pin an "unseen disability" badge to my coat.
3) If I don't take my sticks and do manage to get a seat, do I give the seat up to the elderly woman who is forced to stand by the stubbornly oblivious passengers who bury themselves in their newspapers? Is her need greater than mine? How do I tell? What does she think of a young person taking a seat when she has to stand? I have not had many experiences of being reprimanded for taking the priority seat, but they have happened (and one of them was when I had crutches on prominent display).
4) Would it be better to call the whole thing off and take a taxi? I have thankfully been provided with a taxi fund by the Disabled Students' Allowance this year, but this comes with certain conditions. I have to pay a student contribution on the grounds that all students pay for travel costs (even though normally I travel on a travelcard, so this works out as an extra cost for me). The taxi service, however, is not particularly reliable, and the nature of my work is such that I do not always know when I will need to travel (and the taxis have to be booked in advance). So then I can end up standing around waiting when all I want to do is go home and rest, and when it would be quicker (and cheaper) to take public transport.
The solution? I'm still working on that one. Sometimes I address these dilemmas and make choices that may be good or bad ones with hindsight. At other times, I work from home. The joys of being a PhD student.
For a start, I did not simply go home to enjoy mum's cooking and Sky TV (though these were undoubted benefits). I went home partly to work in schools local to my parents' home, but also to recover having been newly diagnosed with spinal arthritis. My time at home was an ideal opportunity to develop good habits in terms of physiotherapy and pacing in preparation for return to the frenetic London life.
And it is frenetic. I don't think I'd realised before how physically and mentally draining it is to live here, and dealing with a chronic condition only accentuates this. It has been since coming back to London and comparing life here with life at home that I have come to realise this stark contrast. So here are some of my reflections. They form part of a wider series of posts that I hope to be writing in the coming months, outlining everyday dilemmas that people with chronic conditions face. Some of them may seem trivial, but they have been my constant companions recently and so I thought it would be useful to reflect on some of them.
This post will focus on transport. Now Londoners are never shy of complaining about the tube / buses / cars / cyclists / whatever other mode of transport happens to be subject to their disapproving scrutiny. But there are difficulties with transport that a traveller can face beyond the hazards of signal failures and leaves on the line (which would be impressive on the underground).
1) My transport dilemmas begin before I leave the house. The first question is: do I walk to the station nearby or do I get a bus from outside the door to a different station? Both have their positives and negatives. Walking is good for my back, but bad for my knees, especially on hard London pavements. Walking is also quicker (strangely) as I use a route which gets me to work faster than the bus option. I have to weigh up whether my knees will last the 10-minute walk given their recent grumbling / the weight of my rucksack / the speed at which I need to walk in order to be on time.
2) Do I take my sticks? You might think it was an easy decision based purely on whether I need them to walk. Not so. Because depending on the time at which I wish to travel, I may not get a seat without them. So if I do not take them and then don't get a seat, I will paradoxically be more likely to need them to support me when I'm standing on the rocking train. Unlike those with a "baby on board", I do not have the convenience of being able to pin an "unseen disability" badge to my coat.
3) If I don't take my sticks and do manage to get a seat, do I give the seat up to the elderly woman who is forced to stand by the stubbornly oblivious passengers who bury themselves in their newspapers? Is her need greater than mine? How do I tell? What does she think of a young person taking a seat when she has to stand? I have not had many experiences of being reprimanded for taking the priority seat, but they have happened (and one of them was when I had crutches on prominent display).
4) Would it be better to call the whole thing off and take a taxi? I have thankfully been provided with a taxi fund by the Disabled Students' Allowance this year, but this comes with certain conditions. I have to pay a student contribution on the grounds that all students pay for travel costs (even though normally I travel on a travelcard, so this works out as an extra cost for me). The taxi service, however, is not particularly reliable, and the nature of my work is such that I do not always know when I will need to travel (and the taxis have to be booked in advance). So then I can end up standing around waiting when all I want to do is go home and rest, and when it would be quicker (and cheaper) to take public transport.
The solution? I'm still working on that one. Sometimes I address these dilemmas and make choices that may be good or bad ones with hindsight. At other times, I work from home. The joys of being a PhD student.
Saturday 27 July 2013
Daily life
It's been a while since I've posted here, mostly because PhD-related matters have taken over, so that I have become obsessed with p-values as a way of validating the last 12 weeks of my life and work (thankfully I can say I have reached the magic value of p<0.05, so all is well).
I thought that I'd use my return to the world of blogging as a way of revisiting my original purpose for writing this blog; to be a helpful and insightful source of information about everyday life living with a chronic condition.
I want to write about this because I strongly believe that, as a society, we are not well-equipped for dealing with people with chronic conditions (that is, conditions that are not life-threatening, but from which a patient never truly recovers).
You can see hints of this in your local stationery shop. What choice of message do you really have when trying to find a card for someone who's unwell? It essentially boils down to "Get well soon" cards. The imperative nature of this sentence implies a command rather than a hope, and therefore that getting well is somehow in the patient's control (who would love to be better in a flash, but unfortunately life doesn't work like that). These cards reflect the fact that in our society, it seems, there are broadly two categories of people:
1) Those who are acutely ill, who spend their time of sickness in a hospital (rather than in days gone by, when the ill and infirm would often have been cared for at home). The unwell are encouraged to "get well soon" as quickly as possible so they can rejoin group number 2.
2) The completely well, who are able to run around and take part in every single activity that today's frenetic lifestyle throws at them.
It is as if we've forgotten that there are people out there in our homes, schools, places of work, on the bus, attending outpatient appointments, who in fact live every day with some reminder of their chronic condition. And I believe we often forget because those of us with chronic conditions feel a lot of pressure (from within ourselves as well as out there in society) to hide the condition that we live with.
Let me illustrate this with another example. I am often greeted by friends who haven't seen me for a while with "You're looking much better" or "Are you feeling any better?" (please don't worry if you can remember saying this to me at some point - I am as guilty of it as the next person, and I have even less excuse!) Do you see what this does to the listener? Like the ever-more-ubiquitous "how are you?", we are forced to reply yes or agree with the assessment that things are looking up.
Of course, everyone would love it (me most of all) if I could permanently ditch my sticks. But sadly, chronic conditions do not work like that. And by implying, however subtly, that the person in front of you "really should be better by now", you can inadvertently make someone feel guilty for their illness (I would think this is particularly true of people with long-term depression or other mental health conditions, though I have less direct experience of this).
So I would encourage you to remember that there is indeed a group number 3) to add to my analysis above. They are people who live daily life with permanent reminders of a chronic conditions, whether through taking pills, struggling with fatigue, experiencing mental highs and lows, or grappling with unrelenting pain. They are all around you, and many of them will hide their illness or disability in an effort to keep up with today's hectic lifestyle.
How about asking them "So how's life really going for you?" as a way to unlock how things are really going for them? You might be surprised, both by how difficult daily life is for them, and how grateful they are that you've taken an interest.
I thought that I'd use my return to the world of blogging as a way of revisiting my original purpose for writing this blog; to be a helpful and insightful source of information about everyday life living with a chronic condition.
I want to write about this because I strongly believe that, as a society, we are not well-equipped for dealing with people with chronic conditions (that is, conditions that are not life-threatening, but from which a patient never truly recovers).
You can see hints of this in your local stationery shop. What choice of message do you really have when trying to find a card for someone who's unwell? It essentially boils down to "Get well soon" cards. The imperative nature of this sentence implies a command rather than a hope, and therefore that getting well is somehow in the patient's control (who would love to be better in a flash, but unfortunately life doesn't work like that). These cards reflect the fact that in our society, it seems, there are broadly two categories of people:
1) Those who are acutely ill, who spend their time of sickness in a hospital (rather than in days gone by, when the ill and infirm would often have been cared for at home). The unwell are encouraged to "get well soon" as quickly as possible so they can rejoin group number 2.
2) The completely well, who are able to run around and take part in every single activity that today's frenetic lifestyle throws at them.
It is as if we've forgotten that there are people out there in our homes, schools, places of work, on the bus, attending outpatient appointments, who in fact live every day with some reminder of their chronic condition. And I believe we often forget because those of us with chronic conditions feel a lot of pressure (from within ourselves as well as out there in society) to hide the condition that we live with.
Let me illustrate this with another example. I am often greeted by friends who haven't seen me for a while with "You're looking much better" or "Are you feeling any better?" (please don't worry if you can remember saying this to me at some point - I am as guilty of it as the next person, and I have even less excuse!) Do you see what this does to the listener? Like the ever-more-ubiquitous "how are you?", we are forced to reply yes or agree with the assessment that things are looking up.
Of course, everyone would love it (me most of all) if I could permanently ditch my sticks. But sadly, chronic conditions do not work like that. And by implying, however subtly, that the person in front of you "really should be better by now", you can inadvertently make someone feel guilty for their illness (I would think this is particularly true of people with long-term depression or other mental health conditions, though I have less direct experience of this).
So I would encourage you to remember that there is indeed a group number 3) to add to my analysis above. They are people who live daily life with permanent reminders of a chronic conditions, whether through taking pills, struggling with fatigue, experiencing mental highs and lows, or grappling with unrelenting pain. They are all around you, and many of them will hide their illness or disability in an effort to keep up with today's hectic lifestyle.
How about asking them "So how's life really going for you?" as a way to unlock how things are really going for them? You might be surprised, both by how difficult daily life is for them, and how grateful they are that you've taken an interest.
Sunday 2 June 2013
Pet Therapy
I was going to wait for my Disability Living Allowance claim to come through before I posted again, but it seems that this will involve a long silence on my part (the rusty wheels of government grind very slowly). So in the meantime here are some musings on the latest arrival to our family home.
Last week we acquired Silfa, a 13-week old Maine Coon pedigree kitten. She has a more detailed family history than I do (I'm not sure I could name any of my great-grandparents, but hers are available to view on the certificate we were given to guarantee her breeding).
She has already settled in well and has spent more time already in various laps than our previous cat did in his entire lifetime. She has an adorable habit of purring like a steam engine every time you pick her up and stroke her.
Silfa has found her place very quickly as a member of the family, and her bright little face cheers me up whenever I see her. It is hard to explain how much life is dominated by a chronic condition, especially when there is a permanent reminder of the disease in the form of near-constant pain. But having an animal like Silfa around is such a lifeline for me - it allows me to shift my focus away from myself and my daily struggle with pain and fatigue, towards a little bundle of fluff who needs love, care and attention.
I am not the only one who finds the presence of animals therapeutic. Studies have shown that spending time with a therapy dog whilst waiting for an outpatient appointment significantly reduces reported levels of pain and emotional distress http://www.ncbi.nlm.nih.gov/pubmed/22233395. The charity Pets as Therapy (www.petsastherapy.org) is devoted to bringing dogs and cats to sick and disabled people, in order to improve their quality of life.
And it's not just those with physical disabilities that benefit from pet therapy. Those with depression can also benefit from having an animal around (http://www.ingentaconnect.com/content/bloomsbury/azoos/1994/00000007/00000003/art00006)
It is thought that caring for an animal reduces anxiety, helps to structure an owner's day, provides companionship and increases exercise levels, all of which help to improve quality of life. I wonder if the NHS started "prescribing" animals to patients whether they would see a long-term drop in the uptake of antidepressants and other medications?
I remember a wonderful drama that I saw a while ago called "After Thomas". The drama, based on a true story, was about a young Autistic boy whose love of his golden retriever dog helped him to understand other's thoughts and feelings (something that Autistic children often find hard). It's well worth a watch if you can get hold of a copy, although be prepared with a box of tissues when you watch it!
Those are my musings on the benefits of pets as therapeutic agents. I'll leave you with a gorgeous picture of our new cat poking her head through the bannisters...
Last week we acquired Silfa, a 13-week old Maine Coon pedigree kitten. She has a more detailed family history than I do (I'm not sure I could name any of my great-grandparents, but hers are available to view on the certificate we were given to guarantee her breeding).
She has already settled in well and has spent more time already in various laps than our previous cat did in his entire lifetime. She has an adorable habit of purring like a steam engine every time you pick her up and stroke her.
Silfa has found her place very quickly as a member of the family, and her bright little face cheers me up whenever I see her. It is hard to explain how much life is dominated by a chronic condition, especially when there is a permanent reminder of the disease in the form of near-constant pain. But having an animal like Silfa around is such a lifeline for me - it allows me to shift my focus away from myself and my daily struggle with pain and fatigue, towards a little bundle of fluff who needs love, care and attention.
I am not the only one who finds the presence of animals therapeutic. Studies have shown that spending time with a therapy dog whilst waiting for an outpatient appointment significantly reduces reported levels of pain and emotional distress http://www.ncbi.nlm.nih.gov/pubmed/22233395. The charity Pets as Therapy (www.petsastherapy.org) is devoted to bringing dogs and cats to sick and disabled people, in order to improve their quality of life.
And it's not just those with physical disabilities that benefit from pet therapy. Those with depression can also benefit from having an animal around (http://www.ingentaconnect.com/content/bloomsbury/azoos/1994/00000007/00000003/art00006)
It is thought that caring for an animal reduces anxiety, helps to structure an owner's day, provides companionship and increases exercise levels, all of which help to improve quality of life. I wonder if the NHS started "prescribing" animals to patients whether they would see a long-term drop in the uptake of antidepressants and other medications?
I remember a wonderful drama that I saw a while ago called "After Thomas". The drama, based on a true story, was about a young Autistic boy whose love of his golden retriever dog helped him to understand other's thoughts and feelings (something that Autistic children often find hard). It's well worth a watch if you can get hold of a copy, although be prepared with a box of tissues when you watch it!
Those are my musings on the benefits of pets as therapeutic agents. I'll leave you with a gorgeous picture of our new cat poking her head through the bannisters...
Monday 13 May 2013
Benefit Shenanigans Part 2
So my Disability Living Allowance claim was rejected. Not surprising, given the government is aiming to reduce the number of claimants by 600,000 when the DLA becomes the Personal Independence Payment. For those of you who have had the good fortune not to have to puzzle through the DLA application process, here is a very short introduction to the criteria on which they assess claimants:
Care
There are three rates for this component:
1) Lower - when you require help for cooking a main meal once a day
2) Middle - when you require help around the house (e.g. with climbing stairs, washing etc)
3) Highest - when you need supervision at night and more extensive personal care
Mobility
There are two rates for this component:
1) Lower - for if you require supervision out of doors (e.g. if you might wander or get lost without help)
2) Higher - if you have severe physical mobility difficulties
I had been hoping to claim the lowest care component, as I find it increasingly difficult to cook a main meal when living on my own, due to the fatigue caused by my condition and the physical limitations (needing to stand for a long time, lift heavy pans etc). For the mobility component I had been aiming for the higher rate of pay because the pain and fatigue I experience make walking difficult.
It's very frustrating when you come home after a particularly difficult day filled with pain (as I did) and discover a letter on your doorstep which dismisses your claim out of hand. I say out of hand because the assessor took less than a week to reach the decision, and made no effort to contact the health professionals (GP, Consultant Rheumatologist and Physio) I had listed on the form. No medical assessment of any kind has been undertaken, and yet my assessor deems that she has "full and proper information necessary to assess my claim".
My position of being denied the DLA without any medical assessment or even consultation with a medical professional is not unique; this recent BBC article highlights that GPs are being flooded with requests for appeals support from disabled claimants who feel that their claim has not been given the proper thought and attention. http://www.bbc.co.uk/news/uk-scotland-22406739
In my case, the decision was not only founded on limited and ill-considered evidence, but the reasons given for rejecting my claim were simply not true. I am aware that my position is complex with regards to the mobility component; as many of you will be aware, sometimes I can walk almost normally, but sometimes I am severely incapacitated by pain and find walking difficult even with the use of sticks. Apparently this does not happen enough of the time, however, to warrant my receiving financial help.
Similarly, although I had ticked that I have physical difficulties with cooking such as lifting heavy pans, the assessor bizarrely concluded that I had "no problems with lifting" and therefore deemed that I could cook a main meal for one person. She also rather patronisingly suggested that if I had difficulties standing whilst cooking then I could "sit down from time to time". Wow, I can't believe that after all those years of university and postgraduate professional training I couldn't have worked that one out for myself...
The sad thing is that, with the help of the DLA I could afford to lease a car (under the motability scheme www.motability.co.uk) which provides low-cost motoring for disabled people. This would be a major lifeline for me, as it would allow me to maintain my independence and continue my PhD. Without this benefit, I will still probably find a way to afford a car, but it will be harder. And while the government are trumpeting their aims to get people back to work from long-term unemployment (due to disability or otherwise), there is less talk of preventing people like me from falling into the benefit trap. Why not invest now in some practical help such that I can overcome the barriers I face and contribute to society, not just take from it?
So following the rejection of my claim, I became one of the many people listed in the BBC article above who trundled along to their GP and asked for a letter of support. I also sent a reply asking for the case to be reconsidered. Yesterday, I received an acknowledgement letter which stated they may take up to 11 weeks to review my case. But I am hopeful this could mean they will consider my case more carefully this time. Watch this space for updates.
Care
There are three rates for this component:
1) Lower - when you require help for cooking a main meal once a day
2) Middle - when you require help around the house (e.g. with climbing stairs, washing etc)
3) Highest - when you need supervision at night and more extensive personal care
Mobility
There are two rates for this component:
1) Lower - for if you require supervision out of doors (e.g. if you might wander or get lost without help)
2) Higher - if you have severe physical mobility difficulties
I had been hoping to claim the lowest care component, as I find it increasingly difficult to cook a main meal when living on my own, due to the fatigue caused by my condition and the physical limitations (needing to stand for a long time, lift heavy pans etc). For the mobility component I had been aiming for the higher rate of pay because the pain and fatigue I experience make walking difficult.
It's very frustrating when you come home after a particularly difficult day filled with pain (as I did) and discover a letter on your doorstep which dismisses your claim out of hand. I say out of hand because the assessor took less than a week to reach the decision, and made no effort to contact the health professionals (GP, Consultant Rheumatologist and Physio) I had listed on the form. No medical assessment of any kind has been undertaken, and yet my assessor deems that she has "full and proper information necessary to assess my claim".
My position of being denied the DLA without any medical assessment or even consultation with a medical professional is not unique; this recent BBC article highlights that GPs are being flooded with requests for appeals support from disabled claimants who feel that their claim has not been given the proper thought and attention. http://www.bbc.co.uk/news/uk-scotland-22406739
In my case, the decision was not only founded on limited and ill-considered evidence, but the reasons given for rejecting my claim were simply not true. I am aware that my position is complex with regards to the mobility component; as many of you will be aware, sometimes I can walk almost normally, but sometimes I am severely incapacitated by pain and find walking difficult even with the use of sticks. Apparently this does not happen enough of the time, however, to warrant my receiving financial help.
Similarly, although I had ticked that I have physical difficulties with cooking such as lifting heavy pans, the assessor bizarrely concluded that I had "no problems with lifting" and therefore deemed that I could cook a main meal for one person. She also rather patronisingly suggested that if I had difficulties standing whilst cooking then I could "sit down from time to time". Wow, I can't believe that after all those years of university and postgraduate professional training I couldn't have worked that one out for myself...
The sad thing is that, with the help of the DLA I could afford to lease a car (under the motability scheme www.motability.co.uk) which provides low-cost motoring for disabled people. This would be a major lifeline for me, as it would allow me to maintain my independence and continue my PhD. Without this benefit, I will still probably find a way to afford a car, but it will be harder. And while the government are trumpeting their aims to get people back to work from long-term unemployment (due to disability or otherwise), there is less talk of preventing people like me from falling into the benefit trap. Why not invest now in some practical help such that I can overcome the barriers I face and contribute to society, not just take from it?
So following the rejection of my claim, I became one of the many people listed in the BBC article above who trundled along to their GP and asked for a letter of support. I also sent a reply asking for the case to be reconsidered. Yesterday, I received an acknowledgement letter which stated they may take up to 11 weeks to review my case. But I am hopeful this could mean they will consider my case more carefully this time. Watch this space for updates.
Saturday 4 May 2013
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:
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 :-)
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:
- 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.
- large joints of the legs and arms (less common) e.g. hips, knees, shoulders, elbows. SYMPTOMS: pain, stiffness and swelling in affected joints.
- 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.
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 :-)
Friday 3 May 2013
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...
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...
Wednesday 1 May 2013
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!
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.
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:
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).
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.
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