Sunday, 13 October 2013

World Arthritis Day

I thought I would write a post as yesterday 12th Oct was World Arthritis Day & I thought I would write a little about what I have & what I experience living with this condition every day.

My diagnosis

I struggled tremendously to get diagnosed, it took years. I started experiencing mild niggling symptoms when I was about 15 on & off until I was about 18 when the symptoms got much worse beginning in my knee. I was sent to see a physiotherapist by my doctor at the time, as I had a golf ball type swelling on the top of my knee & he was the first to suggest & was convinced that I had arthritis. So off I went back to the doctors to tell them what he had said but they were convinced that I was far too young to have arthritis. In the end they conceded enough that they agreed that there may be at least something wrong with the mechanical side so sent me to orthopedics, one MRI later & they confirmed that it was arthritis.

1. You’re too young to have arthritis & why do you walk with a stick?

I have had full blown arguments in the past with people that have argued, sometimes nastily, that I couldn’t possibly have arthritis because I was too young. Most people that have approached me, have thought that I walk with a stick because I must of hurt my leg in some way, they never think that its arthritis.

Unfortunately people are less aware that young children can have arthritis so it really affects people of any age.

2. What kind of things do people say when people find out I have arthritis.

Can’t they cure it? No at best they can manage it

But I’ve read that supplements, diet & exercise changes can cure it? Again no, although a healthy diet & low impact exercise (which not everyone can do) would help a little for people with inflammatory arthritis, supplements such as Glucosamine, diet & exercise isn’t a cure.

I’ve tried to think of the best way to explain inflammatory arthritis. I live with it & I’m still trying to understand it. But I’m going to try & explain it briefly

Inflammation occurs naturally when people are sick or injured, if you did a blood test some of the same markers may come up in someone with inflammatory arthritis but they would also have additional blood markers. Someone with inflammatory arthritis still gets inflammation if they’re sick or injured but their body also produces an inflammatory response that starts to attack the body affecting bones, tissue & cartilage. People experience an array of symptoms including pain, discomfort, stiffness & fatigue & scientists are still not certain as to why it occurs

This is in contrast to osteoarthritis which is degenerative & without the inflammatory response seen in inflammatory arthritis.

People with osteoarthritis still have pain & discomfort but that’s because there is damage present whereas with inflammatory arthritis the pain can be present even before bone damage has occurred as well as after.

This is why for example for some people with osteoarthritis, exercise to strengthen the muscles around an affected joint can help support it, whereas although it is beneficial to have strong muscles for someone with inflammatory arthritis, unless the inflammatory response is treated with medication, minimal benefit could be achieved and this seems to be where peoples’ misunderstanding lies.

3. So if you have a certain type of arthritis is everybody affected the same way?

You guessed it, Nope. I have Psoriatic Arthritis which some people may be affected quite mildly by but i’m one of the few that get affectef quite significantly. I also like many have additional conditions as well as my arthritis.

4. So what is it like dealing with your arthritis?

My day to day living - I have difficulty doing various tasks even personal tasks (that i’m not going into) but even being able to brush my teeth can be too painful because of my wrist, similarly with other tasks around the house. This also includes any task that includes sitting, standing or walking. Kneeling is out of the question.

Going out - For example you may want to go to an event so you book tickets & go. For someone like me you would need to….

Check accessibility. Are there seats? can they provide wheelchairs? if not, can we hire one nearby? what if there’s too many people & we start getting crushed? & then plan the travel arrangements & then back up arrangements & booking assistance for the travel arrangements & so forth.

Then additionally we have to deal with various GPs, Consultants, nurse & physiotherapist appointments & such & not just for my arthritis. It’s common for me to have three appointments a week but as my Gp said dealing with long term chronic conditions is like doing a full time job when you’re sick all the time.

I’m not going to go into more of the personal details of how my arthritis affects me because I have to explain so often to doctors & in forms that if I don’t have to I don’t want to :)

However, I am very thankful & lucky to have the support of my amazing fiancee & carer who helps me greatly.

5. How do people treat you?

People seem to fit into three categories.

The ones in their own bubble who don’t see you so may inadvertently walk into you or ignore you without knowing.

The people that do see you, may glare at you, muttering things at you or verbally assault you. Unfortunately these people believe the propaganda, that there is huge benefit fraud, that things are harsher for them because people are getting huge amounts in benefits & receive things that they don’t.
I think that there is a misunderstanding of  benefit entitlement, that people believe you must be bed bound to qualify & they don’t understand how difficult it is to manage a disability & maintain any level of normality.

And finally the last group of people that have an understanding of disability, usually because they know someone that has a disability.

For me personally, although at the start I had just a few niggles, now I’m always in some degree of pain (not just because of my arthritis) & things that you never needed to consider without the disease you now have to. I have found a great way to explain the types of compromises that people have to do when dealing with a disability is through the spoon theory.

I’ve covered a fraction of what its like to have arthritis but the best thing to come through more awareness, would be for people to see a girl struggling to get on a bus with stick in hand & instead of ignoring her existence or thinking shes a fraud, offer a seat before she stumbles? Please educate yourself as intolerance can be worse than dealing with the condition itself.

There are many types of muscular diseases. Depending on the source there are up to 200 hundred different types which shows how there needs to be more awareness & that for each type we are all affected individually. People need to start asking if they’re unsure (reasonable questions) & for us to be open to answering them.

Stay awesome & at all times keep hold of your spoons :)

Useful resources on arthritis

Arthritis Care - For support & information, they have a helpline & forum

Arthritis Research -For further information

What I have written about is only a fraction about my condition & what I experience. Each condition can affect each person differently. If you are worried or want further advise there are many resources available don’t worry in silence :)

Saturday, 5 October 2013

Go back & do it again! The Conservative party conference

So just in case you haven’t been fortunate enough to escape to a distant land or planet or you haven’t been sticking your fingers in your ears with a blindfold on & have being going ” La la la, I can’t here you” you will be aware that the Conservative party conference finished this week.

There have been announcements & leaked documents & to say their ‘policies’ have been hastenly rushed seems like the understatement of the century. It’s like they were doing their homework last minute on the bus whilst gigging with their friends, planning to pick on the vulnerable kid at break, whilst making sure they snatch any treats from any of the other kids.

So out of the array of topics that came out just before the conference & during.

1.The Mirror - Working for benefits

The conservatives seemed to have discarded the persona a little while ago that we are all in this together, leaning more towards the principle that there are whole groups that are just undeserving.
This seems to extend especially to those claiming jobseekers allowance, that they are content to ‘languish’ on benefits & that no one wants to get a job.

So they have proposed that to get JSA claimants off benefits & into a job & to stop the ‘Something for nothing culture’, claimants will undertake 30hrs a week on a community work scheme on top of searching for a job.

But the real reason for this is to appease the proportion of society that has the belief that it is one big party living on benefits & that the majority have no interest in looking for a job, whereas in fact its the exact opposite.

I can see this hindering people with disabilities who claim jobseekers. Will there be flexibility in the scheme? & how are people going to be available for job interviews as most would be scheduled for between 9-5.

On this blog Where’s the benefit they have highlighted many people that were claiming other benefits, have been pushed on to JSA despite being in no fit state to work may now be forced to undergo unsuitable treatment or risk losing their benefits.

And just in case you want to complain, there are plans to attempt to withdraw from the Europen Convention on Human Rights, with proposals of new anti-union laws.

2. The Telegraph - Human whatsits?

In the Telegraph, it further explains the Government’s reasons from withdrawing from the European Convention on Human Rights. I can understand how the Government & the public don’t want dangerous criminals in the country & they want them removed but my concern would be whilst they’re there, will they withdraw other rights for joe public? As with the possible new anti-union laws.

3. The guardian - Plant what?

So just before the conference Mr Osbourne stated that “He doesn’t want to be at the forefront of tackling climate change”. This seems to be because Osbourne believes that other countries should also contribute their own share towards alleviating the impact of climate change. I agree but instead of continuing to do the responsible thing, it seems to be more along the lines of “Well they’re not picking up their rubbish, so why should we?”

This isn’t even approaching the real issue, that the living wage is too low & the profit made on energy too high. Personally I would find it more logical to negotiate fairer energy prices but I have the sneaking suspicion that this wouldn’t be as ‘profitable’ for certain members of society.

But on an important point we need to do what we can to be more responsible with the energy we use & the way we provide it. The Earth does go through natural cycles of climate change, it has done through out its history but we are accelerating this one significantly & we must modify our behavior to be able to leave the planet to further generations for them to appreciate it & not to have a harsher existence brought on through our actions.

4. The Daily Mail - there are no words

So I read this……

There has been a green paper leaked that has set out a “Thermal Reduction Initiative” which would be a 9% duty set on champagne sold in public places. According to the paper, chilled champagne adds on average an additional 0.5% to a bar’s carbon footprint. (& no I did not check this one!! but their stats have been awful so don’t take it on face value)

This IS apparently being pushed as an environmental initiative even though it won’t include Prosecco or Cava even though these also are best served chilled.

My brain further couldn’t believe what it was reading when apparently the Lib Dems had taken the energy to lobby to exempt Pomagne & Babycham!

Now whilst making sure to wear my most serious face, this isn’t an environmental measure as it would include every chilled wine & such, this is just for publicity because of what happened with the pastry tax. I would love to know why the Lib Dems put in all that effort to get Pomagne & Babycham exempt, I would assume that its either because it aided the Lib Dems cause in some way or someone has a real liken for it!

When reading these types of stories, you cant help but think that if they put this much effort into this, why aren’t significant policy changes that affect vulnerable people being thoroughly tested to ensure the smallest amount of people fall through the cracks, unfortunately it probably just comes down to profit.

5. The Guardian - Why aren’t YOU celebrating suffering?

This I find disgusting. Leaked documents seem to show that IDS was trying to find a way of making it even more difficult for sick & disabled people to claim benefits. He was also trying to see if he could put in place additional secondary legislation without the need to go through Parliament to give Jobcentres more powers to sanction people.

The article also goes on to explain how the DWP has had its ‘celebration’ week of new tougher sanctions indefinitely suspended.

I find this both alarming & disturbing that they were going to ‘celebrate’ cutting peoples money. I also find it disturbing that he was trying to circumvent Parliament.

It seems that as long as the people that could carry some of the burden don’t, the vulnerable will continue to carry much more of a disproportional share.

So many different benefits & services have been affected. With it being falsely implied that something is the majority, like most claimants are content languishing on benefits & that they get payed exorbitant amounts of money, whereas instead its a very small minority.

I just wish more than anything else that people wouldn’t read or watch something & take it on face value. The spread of inaccurate figures & facts just breeds ignorance.

I have seen & heard so many discussions & comments that include “I know someone who knows someone thats a cheat” or ” There’s someone in my street that’s perfectly capable of working” & this frustrates the disabled community immensely.

Because more often than not they don’t, often it is a misunderstanding or lack of understanding of the individuals disability or entitlement. You don’t know what goes on when they step through their door, taking painkillers, resting, vomiting & such.

It also doesn’t help with the propaganda fed by certain areas of society making people believe that benefits are too high, whereas in fact wages are too low.

Just remember, to get the complete picture you must read as much as you can from as many sources as you can. Once you block your mind to the possibility that you are wrong, you will never learn anything new.

And to finish this post (thank god conferences aren’t every week, this took many breaks & many days) the Conservatives have been doing a #sharethefacts about how their existing policies have been & their new polices will help people but through out the conference, the only #sharethefact tag i could find appropriate to sum up the conference was this……….