Counting Spoons

So what has happen since my last “spoonie” bod update?

Well all I can say is having multiple overlapping conditions is just damn complicated & inconsiderate some times, well a lot of the time. Too often than not I have learn’t that you can calculate how many spoons you may need for a particular task & often half way through a plus changes to a minus & you have to deal with the “fabulous” consequences.

But on the whole there have been many hospital appointments, GP & nurse appointments & I underwent surgery.

I was waiting to have a nerve test done which i've had & my nerves at least are doing what they are suppose to. Great, but that obviously doesn't explain the pins & needles in my feet & legs. The guy however that was doing the test said I need to be sent for a head & spinal scan & also mentioned that Doctors have found that some people on Anti-TNF treatment have discovered that it has messed up their nerves.

Oh, well that's peachy then !

It’s not like I can really choose not to take medication for my arthritis so it does "slightly " complicate things some what however there are a few similar medications that I could switch to if need be.

I've been off my Anti-TNF treatment for awhile as I had to have an operation & as my medication suppresses my immune system, my rheumatology team took me off treatment so to try & give my body the best chance of healing afterwards . Although not great, it’s worse to be left on the medication (for me personally anyway) like my old team would (different treatment but it still suppressed my immune system) as often I wouldn't heal properly & I would be more prone to infections.

The operation hurt, I was awake though sedated. I'm not a wimp about these things been as I have pain all the time but I tried to tell the anaesthetist that when I had sedation previously at this hospital for a non surgical procedure, I was barely sedated at all & obviously as this was surgery I didn't want that to happen again.

Unfortunately he took this as me having a low pain threshold instead of having a higher level of pain to deal with but I didn’t try & argue & just agreed with him as it was easier. He told me not to worry that the sedation that he was going to give would be enough but it wasn't, he had to give me more sedation & pain relief because I was too awake.

I then had to lie in recovery for an hour whilst I came round & after you have eaten they move you to a chair recovery before you are seen by a doctor & then discharged. 

So half way though being discharged I started to feel bad & that I was going to be sick so I told the doctor who asked if I "hold on for a minute" & they would get me a sick bowl. Ookk? So shes talking about my discharge whilst I try & concentrate on not throwing up on her or that's what I thought. About a minute maybe? Later she asks me if "I'm ok" I proceed to slightly shake my head, mumble "no" & then I blackout. I mean how it happens in films, think Harry Potter & the dementors without the dementors, soul sucking & the screaming. I came back around to people holding me up right on the chair on oxygen with a blood pressure cuff on & O² sats monitor. They proceeded to plonk me on a trolley & wheel me back into the recovery for another hour & a half.

Nooooo! I was trying to escape!

Turns out that my blood pressure had got really low 60/40 but by the time I left recovery (for the second time) it had got nearer normal at around 100/80. I asked the nurses if TechieCarer was ok throughout this & she said “Oh yes but you scared the doctor half to death”.

Whoops, well I did warn her!

Anyway other than an early infection which my GP was awesome quick to treat, I healed as I should & when I went to my doctor to talk to him about some other tests I had & my bowels, (I know! but everybody has them) he suggested that I had another blood test.

This was to check my ferritin levels which is an important little protein for those that don't know that stores & realises iron. I had had my red blood count done, the amount, size & shape were all as they should be & usually if they aren’t, it is a good sign of anemia. However when I had my ferritin checked my levels were really low indicating that although the other signs were fine I was infact anemic because I was deficient in the little protein that knows what to do with the iron.

This is also likely one of the main reasons I blacked out after my surgery & so I’ve now been put on quite a significant dose of iron tablets to try & get everything to how it should.

Also my usual physio is off sick (Boo! Hope she is better soon) so I have been seeing a new physio who is really nice. She had me trying wax therapy which is very odd & since I have been off my medication I’m in quite the flare & have been having alot of inflammation in my joints. My hips have been especially more painful which the physio has said is because I have bursitis in my hip (again) & inflammation in my pelvis. So unfortunately i'm not going to be able to avoid a steroid injection this time but hopefully it should get the flare inflammation back under some kind of control.

So yep that’s what's been occurring

Chronic illness, disability & a box that doesn’t “quite” fit

So I am referring to a blog post I have read titled “Please Stop Framing Disability as Just a Welfare Issue” & although I refer to the piece it is not an attack at the bloggers character but criticism of a piece that I felt was deeply one sided in parts.

I have linked to the blog post that I am referring to above & about half way down the post it refers to a section of the disabled community as the “Sick movement”.

I can’t see how refusing to accept a section of the disabled community as that, disabled, is suppose to support a move to have the disabled community included fully into society?

Just because someone may personally believe that these people do not “fit” into the definition they have of disability doesn't make it true.

It is also deeply disturbing & damaging to imply that if one person is perceived to have a severe disability & can do a proportion of work, that people with perceived “less severe” disabilities should have no excuses. When in reality most have additional difficulties that are not taken into account when casting judgement, which in itself can often be most damaging to the individual & will not support any idea of being confident living with their disability.

I have several overlapping medical conditions including psoriatic arthritis & hypermobility & although some conditions with the appropriate medical treatment can be well managed, medicine is still not perfect & often a person's condition is still disabling.

I have a condition which as a result causes disability & so therefore i am DISABLED. My arthritis causes me pain, fatigue which restricts my movement. I am restricted in my movement by the inflammation & pain & I can not carry anything heavy because my wrists will physically give way & this is just to start. Although I have medical treatment, I am one of those where medicine can not control the disabling aspects of my condition.

Disability by definition is a restriction & a limitation. It is not because we aren't trying hard enough, that we’re not “determined” or that we are giving in. With all the will in the world it won’t necessarily be enough if the body can’t keep up, even if the person had unlimited support & adaptations & this is not a failing on the person’s part.

It is bad enough that the government & the media consistently bash the disabled community on its legitimacy (which creates a more ablest environment) without members of the disabled community excluding people, often newly disabled, because they don’t believe that these people belong in their definition of disability.

However much the blogger in question may not like welfare being part of the immediate debate it is because if people are left without money & security when you are disabled (especially newly so) it will worry the life out of you, as it would for others disabled or not.

At the point when the brown envelope hits the mat the last thing a disabled person is thinking about is how to change disability policy for the better but instead are hoping that they will have a roof over their head, food & heat. The blogger makes it come across as if the first thing that enters a newly disabled person’s mind are pound signs but instead it is worry.

The work capability assessments work on the basis of the person is "guilty" or has something to hide & it grades on how “damaged” a person is. I would argue that the work capability assessments are the immediate basic problem for many. They are disabling in the way they are carried out & inspire no level of confidence from the individual that they will receive the support they need.

From what I have taken, from what the blogger has written, I agree that society is disabling but even if we had some beautiful utopia (oh how I wish) people will still be disabled especially those with chronic illnesses until medicine advances further. The WCA is broken & campaigners are drawing attention to the failings of the assessment to try & improve the situation. If the WCA was altered or removed this wouldn’t be the end to campaigning, it is only the start.

It is not seen as a "black or white" issue or that simply welfare is the only issue affecting disability. I find it incredibly patronising that people who campaign for improvement in the WCA apparently want the "protective feeling of a hospital environment".

The campaigners that campaign against the WCA want greater support given to disabled people so that they can realise their full potential. However many of the policies that were moving towards this have been cut, altered or greatly reduced including the ILF, PIP & access to work. Although imperfect, these were steps towards giving greater support to disabled people to realise their full potential & to be independent but due to the cuts the progress that has been made is largely being undone.

Disease does disable people & so does society. I would love society to lift the barriers around access to transport & buildings, for flexible working, job sharing or variable hours. But also for society to see that some people can't do paid work but could volunteer & that some can’t work but still have valuable contributions to make in other ways & to appreciate the value in it.

But this takes time & for society to care, which seems to be happening less & less with the increasing scrounger rhetoric portrayed by the media. Disability doesn’t fit into a tidy box or category it is as unique as the individual affected. The blogger only sees the final goal, not appreciating that we can not ignore the issues of the WCA if we want fair treatment for disabled people.

The process takes time.

NHS Wales: Problems either side of the divide

So a certain paper has in their eternal wisdom decided to do a week long “investigation” into lets bash NHS Wales for a laugh.

In my honest opinion I can’t see that this is going to be anything more than cheap political point scoring & an attempt to imply that similar issues can’t be seen within NHS England.

This however isn’t to say that there aren’t issues within the Welsh NHS system, I live through these issues & use many different services. Just one issue is not being able to rely on appointments & procedures to be scheduled when they should be & having to constantly chase things up which adds additional stress that could be avoided. And this is just one of the problems I have encountered & myself & my partner will be contacting those who need to know further to try & address these failings.

However, throughout the whole of the NHS there are failings but there are also services that are under the most intense strain in modern times, are struggling to provide the best for their patients & often succeed by relying most often on the dedication of the staff in those departments. So often we condem a whole hospital or a whole system on the parts that are failing instead of acknowledging the good parts & correcting the failings. In so doing we will only manage to further alienate staff that are doing a great job, in difficult circumstances, that the NHS desperately needs to keep hold of.

I also can not see nor believe that the failings within NHS Wales would be fixed by wasting billions in top down reorganisation which even senior tory party heads have agreed was a bad decision. There is also no mention about the continued underfunding to the Welsh Assembly, the difference in demographic, geography or that patients have been sent across the border for specialist treatment for years & NHS Wales funds them.

Usually NHS Wales patients have been sent across the border because of the intensive resources needed for a specialist centre would have made it a much more expensive option for a centre to run in Wales. For example if a minority need the specialist service it can be more viable to share facilities. However there are cases where a specialist centre has been put off when a need has been identified.

This isn’t however just seen in Wales. Specialist centers are highly resource intensive so centres can often serve people from outside the hospital’s trust with patients having to travel to other trusts for specialist treatment.

The simple fact is that parties are using the NHS for political point scoring as they have done for many years. That by looking at reports from the Welsh Assembly & other media coverage, the Data actually says Wales fared better than the English NHS system whereas other data contradicts this. So often data can be taken out of context or isn’t extensive.

In my honest opinion the only reason that the NHS Wales system has been attacked is because the Welsh Assembly has a minority Labour government & Westminster wants to "prove" that the Welsh NHS system has fared worse than the English. By bashing Wales it only stands to harm England as well as it attempts to brush over the major failings in NHS England.

 Inherently the Welsh & English systems face different challenges. Both systems have issues & political point scoring is damaging & serves nothing more than to detract from real productive changes being made within the NHS. Its time that parties took a step back, looked for a longer term strategy for the NHS & that patients where the core focus. At the end of the day patients deal with the problems & use the service. These patients know what they truly need, what is wasteful & what works. I also urge MPs & AMs not to pander to the papers or create spin because this isn’t going to help your constituents. Instead talk to people in your constituencies that use these services & understand what needs to be put right in each hospital.

When a AM is turning to Google to get information & opinion about the NHS in Wales instead of talking to the patients that use the system, there is something fundamentally wrong.

World Arthritis Day: Arthritis & the extras.

So this is my second time writing a post for World Arthritis Day, an event that I never knew that I would be writing about, as many others would have never have thought they would do either & my first blog post can be found here.

However, this year I thought I would focus on the often missed “extras” as many often see arthritis as just a disease that you have in your pension years that gives you “Creaky Bones”. When in a matter of fact that is only the headliner, the “star attraction” & there are many added extras that come with it & that these “extras” can vary from type of arthritis, down to the individual, with people experiencing the same disease quite differently.

For myself personally, I have Psoriatic Arthritis (along with other conditions) so I will be referencing my experiences & my specific type of arthritis.

As well as inflammation affecting the joints, there can be inflammation affecting the ligaments, cartilage, other tissues & even an individuals organs. I often have inflammation affecting the muscles & cartilage in between my ribs & have had many bouts of tendonitis (inflammation around the tendons). I’ve also have had bursitis which is inflammation of the synovial fluid in the joint, none of which did I know could happen when I was first diagnosed.

Also a major factor is fatigue & this occurs due to elevated levels of inflammation in the body.

The best way to describe it to someone who doesn’t have the disease is to think of the worse bug you have ever had & how exhausted you felt. You were exhausted because your immune system is going into overdrive fighting the bug (so obviously hence why you're tired) & when someone has psoriatic arthritis, their immune system is overacting but with no infection present.

People don’t know exactly why the immune system is overactive, the general consensus is that it’s likely caused by a genetic fault &/or triggered by an infection.

Because my immune system is overactive, I have to take a drug called Humira which is an anti-TNF to suppress my body's immune response, thus lessening the inflammation. For some people they find that it halts the active inflammation & for others a level of inflammation remains which seems to be what has happened in my case.

I take my Humira with the use of a subcutaneous injection (didn’t think i’d be doing that) & as a result of the medication it means that i am immune compromised, didn’t think that would happen either. Obviously, when you're immune suppressed you're more susceptible to infections & this unlocks a whole new level of possible sucky extras. There is some suggestion that people with arthritis may experience added dental problems & for me this has certainly been the case where I had some dental work completed & all seem successful.

However, it is believed that a small gap had remained & due to my immune compromised state, a cyst formed which later became infected. Due to the infection I had to come off my arthritis medication in order to not compromise my immune system further. However this meant my arthritis was uncontrolled for 6 months whilst my dental cyst was diagnosed, treated & I recovered. As a result of being off my medication for that period I now experience pins & needles in my feet & legs which they think has happened because of damage caused from high levels of inflammation in my system. I am currently awaiting nerve tests to confirm the cause & extent of the damage.

This only briefly highlights some of the issues that I have experienced, one individual with one type of arthritis & is by no means the complete story. Many won’t experience what I have, they may experience different symptoms depending on the type of arthritis but I am writing this to highlight that arthritis isn’t as simple as just “Creeky Bones” & is still greatly misunderstood by the general public.

It’s not surprising when there are between 100 & 200 different types of musculoskeletal conditions depending on reference cited & many people still view it as a disease of that you get in your elder years. People still don't understand the great impact arthritis has on someone’s health & they often miss how complex a disease arthritis is & that although you may not see an effect outwardly, it can have a deep effect on the individual.

The public needs to be made more aware of the complex nature of arthritis so that to better understand some of the difficulties someone with arthritis may face. To also understand that there needs to be more research conducted & that arthritis research still receives markedly less in funds than other conditions. There also needs to be a more inclusive nature in the campaigns that arthritis charities conduct, as too often they focus solely on older people with disease & when charities do focus their campaigns, they are often at children & teenagers, often missing those in between. This will help to change peoples’ perceptions towards those that are not elderly & have arthritis & may also help with some of the hostility that often these people may face.

Finally if there is anyone reading this that has been newly diagnosed with arthritis, don’t freak out. I know that is harder said than done but arthritis is really very unique to each individual & often people don’t experience the complications I have. However, I have no doubt that it won’t be as you expect & my best advice is don’t panic, don’t think you’ll get everything & become as informed as you can.

So ass pinching isn't OK?

(Trigger Warning: Sexual harassment)

So a YouTuber recently has made a "prank" video where he pinches random girls asses. Now this is never ok to do either to a man or a women without permission but especially to people that you don't know.

Thankfully the YouTube community have been on the ball with many YouTubers voicing their concerns & outrage to this video, which included composing a Open Letter  which many have signed. Also viewers & the general public on the whole have been quite understandably upset about this video & appalled by it especially as this doesn't seem to be an isolated video from this particular YouTuber.

But then there will always be some (there always is) that have views from the past that should have stayed there & you will always have trolls coming out from under their bridges baiting them on.

So here is the tone of some of the negative comments so far.

People saying "Don't be such a crybaby hes only pinching girls asses, its harmless"

Well, no its not.

You have no clue what it happening in those girls' lives. Any of them could be being bullied, have had experienced sexual abuse trauma or be in a violent relationship.

"The girl was laughing she saw the funny side!"

Erm, no that laugh is an uncomfortable one, it's a laugh of  "Did this really just happen? Is this guy serious?" It's a laugh when something so socially unacceptable is thrown at you & your brain needs a second to work out what the hell has just happened.

Then reading further down the comments we go into more uncomfortable territory such as to include comments like "She shouldn't dress like that". I shouldn't have to repeat that the way a women dresses means nothing more than she like likes that outfit & is not a pretext to anything else.

And this is what I would like to address, what he did was wrong, that's plain to see but what it causes can be far reaching. It causes a ripple affect & this can be even seen throughout the comments. The trolls undoubtedly come out but there are people pushed on by the trolls. As soon as sexual harassment like this is normalized as "OK", it's a slippery slope downwards.

As for the YouTuber in question, the best advice I could give him is own your mistakes. Everybody should have the chance to & stop burying your head in the sand. Personally if I were you I would pull the video & donate the money to a charity on sexual harassment & abuse, let something good come out of it.

And for anyone that watches his YouTube video & wants to comment back on any of these negative comments, try not to (I know it's hard). Report them instead because the more people that comment on those negative comments will push the negative comments up & all the outrage will be washed out of view by the sexist & troll comments at the top. YouTube needs to fix this but that is perhaps a topic for another time.

Update

Since the YouTuber's first video was posted it has now been removed for violating YouTube's terms & conditions & their channel was briefly suspended. Since the first video was uploaded two successive videos have now been uploaded. The second where it was with a woman pinching mens' asses & the third video where the YouTuber explains that the videos were a "social experiment".

eGremlin

A Welsh opinion on today's vote on Scottish independence.

I was born in England next to the border with Wales, have ancestry from both Scotland, England & Wales but for me personally I have lived longer in Wales,, love Wales and consider myself Welsh first & British second.

I’ve been following the debate I have seen both the English & Scottish point of view, the views portrayed by the media and the views of my friends on both sides of the border.

Unsurprisingly the Better Together campaign has seemed at the very least patronising at times often resorting to fear mongering about issues that shouldn’t even be issues. Issues that have been made out to be impossible to work around when plenty of new countries have found solutions to these problems with relatively little fuss. This wasn't helped by Westminster refusing to confirm their position on a yes vote, bringing uncertainty that isn’t needed. And now in the later stages we have bribery, more funding promised instead of giving people guaranteed policy change if there was a no vote. It also doesn’t help prove that you will follow through with your promises when in the next breath your backbenchers swear to reject it.

The thing is England still thinks along similar tones as it once did in the days of Empire & often doesn't realise how things said can come across badly & how often the Welsh & Scottish people can be treated like second class citizens.

We get our money given to us like an allowance & when we have different priorities like free prescriptions & free or subsidized education you moan. that its not fair. Its not fair that England has to pay what it does, we agree but thats why we have prioritised money for these, we don’t get any extra money for this, we just spend it differently.

Also people may feel differently if Scotland was represented better in Westminster but how can they? They did not vote for this government that has imposed some of the harshest cuts in recent times & it doesn’t represent the majority of Wales either with only eight Welsh Conservative MPs sitting in parliament.

Wales achieved full devolution in 2011. I know that there were many in Wales who as well as voting for devolution to have more control over policy, also voted for devolution for a degree of protection from Westminster. The ability to lessen the impact of the cuts just a little.

Also devolution makes sense. For example planned changes in NHS England to make up to half of NHS A&E departments specialist units wouldn’t necessarily work for Scotland & Wales with countries that have fewer hospital’s & more space in between them. With small community hospitals that are sometimes the only provision for 2hrs + in any direction, they become a jack of all trades to serve the community. Although Scotland & Wales have lost some of these hospitals it would have even made less sense for a minister in London to make the decision when he or she can get to a hospital within mere minutes.

Furthermore when Scotland's Parliament (Pàrlamaid na h-Alb) asked for Westminster ministers that included Ian Duncan Smith, Ester Mcvey & Lord Freud to come to the Scottish Parliament to answer questions at the Scotlands Welfare Reform Committee the ministers seemed to refuse. This included Ester Mcvey agreeing to meet ministers “informally” but not appear in front of the committee in the same way that she can be summoned to Work and Pensions Select Committee at Westminister. This just screams of a lack of respect, no MP wants to be dragged in front of a committee to answer questions on what their department has done but if you want Scotland to feel that Westminster thinks about & cares about what the people think & that you treat them as equals, you should treat their committee in the exact same way as its Westminster cousin.

For me personally I don't want the United Kingdom split up but we can’t stay with the current model of the union which was made in days before & during the empire. It is modelled on a system that fundamentally doesn’t treat people equally as it comes from the days of the conqueror and the conquered. The only way to keep the union in the long term would be to change together as equals & that involves compromise which I don’t think Westminster still really wants to do. The union could continue but not in its current format, countries like the USA & Switzerland show there is more than one way to do it but things would need to change.

You can see that regardless of the outcome of today's vote that people want their own voice. Many in Cornwall want there own parliament as Scotland & Wales has & the Cornish people have only recently been officially recognised as a minority people too.. There have also been calls for Yorkshire to have their own parliament as well.

I don't want to see Scotland leave but they deserve the right to self determination. I know there are risks for them leaving but there a risks for them staying. For us I think that if Scotland leaves there is the possibility that we will see harsher times as the Government clamps down further with knee jerk decisions & ill thought out plans in response to independence. (which I hope wouldn’t be the case). I also think that the Welsh independence movement will grow (it already has with the Scottish vote) but our Assembly is younger, we need stronger industry & we still have a way to go.

For Wales & Scotland we are Celtic siblings along with Cornwall, Ireland & the Isle of Man, as well as Celts on other continents. The Celtic link will never be broken whatever happens & we have a strong identity & a strong culture of our own. But people suggesting that if Scotland votes yes for independence that they will lose their shared history with the rest of the British Isles including England is nonsensical. That history will be there for better & for worse Scotland is just deciding today on what the next chapter will be.

The ICE Bucket Challenge & Drug Creation

So many of you may have seen the Ice bucket challenge going around on the internet recently. For people that don’t know its in aid of raising money for a charity ALSA who support people with ALS (Amyotrophic lateral sclerosis) or other wise known as Motor Neurone disease in the UK.

Motor neurone disease is terrible.

The reason that I have chosen to share this video is that it shows someone whose family has been deeply affected by the disease & shows a glimpse of their reality. And the main factor that touched my heart, that I know too well is that he says:

"I’m not profitable….I’m not worth saving"

& the shit thing is pharmacy company’s will manly only invest in the creation of drugs if they believe that they can make a reasonable return, like any company. I often wonder if they had a patient in front of them, if they would feel different but at the end of the day they are a company & like any company they want to make a profit.

The more well known a disease is like cancer, there is a much higher rate of drugs coming into the market but the rarer the condition, the less drug choices you have because there are simply not enough people affected to be deemed profitable, its not that it can’t be done.

This is why we need to give opportunities for our universities to research & make affordable treatments for rarer diseases (which many do magnificent research anyway). It shouldn’t be the case that access to a broad spectrum of treatment is based on how common a disease you have.

To help you realise how few new specific treatments are created for one of my conditions, psoriasis arthritis, the older type of medication, disease modifying antirheumatic drugs (DMAs), were mostly created in the 50s to 60s & of these there are five!

Of the newer type of medications used today, biological response modifiers (anti-tnfs), there are also five & these began to be approved from 2002 onwards, so a 33 year gap between medical advances. This is for a condition that affects a much wider range of the population & although the rate of new medications has increased it is still low & this is why the more rarer diseases than my own need proper medical research.

Everybody is worth saving

So if you can donate please remember to donate to your local charities also & make sure that the charity is utilising funds correctly.

MNDA UK Charity: http://www.mndassociation.org/

There will always be bends in the road (& in my bones)

So, I haven't posted in awhile!

Its not because I haven’t wanted to but as life does, it throws up bumps in the road that we can not foresee & everything can come at once.Top that with having a spoonie body & things can easily grind down to a halt.

So, since my last post I have seen the duty rheumatologist (again!), as I have been experiencing pins & needles in my legs since my last flare. The rheumatologist thought it was either steroid diabetes or something wrong with the nerves due to the inflammation I had in my legs. So I’ve been tested for steroid diabetes & its not that so I’m now currently waiting to have nerve tests on my legs… sweet! (urgh)

I’ve have also been diagnosed with another skin condition (my immune system hates me!!). So this means that although my psoriasis is now under control (thanks to my Humira) it is now being replaced with another skin condition, oh the irony!

I’m grateful that my new Doctor is really nice but its been a pain in the backside trying to get appointments because the administration is so messed up. To top it off, I have to also have surgery, luckily it should be small. The bigger issue though is that I will have to be off my arthritis meds for two weeks before & six weeks after, urgh. So there goes my rheumy nurse’s wish for me to have a solid run on my meds. You see this is what a lot of people don’t understand, complications arise & people don’t seem to understand that arthritis is not just a dull ache.

And then to end unfortunately my Dad passed away, I’ve left it until last to write about not because I don’t care, I really do but I just don’t know what to say really. He had been ill for awhile, not that that is a comfort & although things in my family haven’t been simple, many families aren’t simple, I do miss him.

So yep! you get the general gist, its been a bit tough & this doesn’t even include tearing my shoulder muscle or computer problems etc. I’m hoping to start posting again soon but you can see why I haven’t

So bye for now!

EU elections?

So it EuroVision!! Oh wait…..

So today is the EU elections, not that a significant percentage of the population actually seems to care. By watching tv & the mainstream media, it would be easy to think that UKIP were the only party standing & that different opinions almost seem to not exist. However, this has seemed to be the status quo in recent years, that less care has been put in to include all sides of an issue, with some issues completely missed from the mainstream media.

It is slowly getting better, more papers are picking up on important news stories that were once missed & Twitter, as always has stepped into fill the void.

The main reason I mention this is because most of the general public doesn’t know what the EU exactly does, other than it costs money. Leaving out how racist some have been which I for the record do not condone, If you have a party that is telling the public these “facts” about the EU unless you research it yourself (a lot don’t) many could believe in what they are saying.

In other countries kids are taught much more about how their government works. And when you are educated on something, you will come to care a lot more about it if it is lost, who is running it & if you want it changed. I think we need to educate on what the EU actually does. We rarely hear a mention of the EU (unless its an election), of debates from within the parliament. And when the mainstream parties don’t put anywhere near as much value on the EU elections as the UK general election it gives off the impression that not even the main parties give a monkeys.

You really can’t complain, if you chose not to vote. Our inaction can aid things we don’t want to happen, more extremist parties will & do get seats. All I would ask of anyone is to please vote but research their policies for yourself & know what you're voting for. The EU is proportional representation, the little parties do get seats, even spoil your ballot. And for me personally what womens suffrage went through for the vote, it would be awful not to use it.

#BADD2014: Things are not always what they seem

Please take a seat, sit back & tell me what you see?


You may see the same thing as someone else, you may see many things. 

You see perception, is a funny thing. 

Its not static, it is changeable & it is different for all of us. Our experiences, personalities, history, the people in our lives & our environment mold it, but it can also lie to us.

I have Psoriatic Arthritis, Hypermobility, Bile Reflux Disease to name but a few & I am also young.
So when I venture out into the outside world society perceives that if you are young, in general you should be “well” but this isn’t always the case. And this is the problem, no one fits perfectly into a “box”, we are all unique, disabled or not. As a result, young people with disabilities visible or not, often experience a great variety of response when venturing outside from good to down right nasty. 

I too don’t like putting people into “categories” but in the spirit of saving time & to explain how society can perceive disabled people, please bear with me.

There are people in society who are empathetic & quite often have disabled friends &/or family & so understand more than most how things are & are willing to give help if needed.

Then there are people who are oblivious to you or lack knowledge. This isn’t necessarily purposeful, we all get preoccupied with our own lives at times & if you haven’t come across a particular situation you won’t necessarily react correctly. 

Yes, often these people can be confused with those that just don’t care because they sit in the disabled seats so they can have a bit more leg room & don’t offer you the seat when you hobble on to the bus, but often although they are looking at you, they are too preoccupied with their own lives to notice those around them. This is the same when I have had to use a wheelchair & have be stepped or lent over.

This is however not ok, pre occupied or not so to these people please pay attention.

However often when they do spot you, they often ask questions & as long as these questions are not just plainly rude or intrusive most disabled people should be happy to answer them but if not please respect that. I know there are some that aren’t & that’s their choice but especially for those with invisible conditions, if we want things to improve without the need to tattoo it on our foreheads we need to communicate so that people can understand.

I have been asked many questions about why I’m using a stick or I’m in a wheelchair. When they find out I have arthritis they usually say I’m too young because its associated as being an “old age disease” as most people don’t understand there are hundreds of musculoskeletal conditions & even children can have it. I’ve even had people argue with me that it wasn’t possible for me to have arthritis because I’m young which is obviously not ok.

Then I, like many with disabilities have been given “advice” which generally the rule of thumb is if you aren’t disabled yourself best to leave well alone as not to offend. 

It has ranged from the wildly misguided to plainly offensive. With comments of have you tried glucosamine, to wrapping myself in copper (copper bracelets, insoles etc), to have you tried exercise & juicing. These won’t cure me, a healthy diet is always beneficial for anyone but to suggest that it will stop my immune system attacking itself is misleading at best & for some very damaging.

One particular topic which can also be offensive is when talking about joint pain & an able bodied person says, “me too.” Our pain is our own & it is significant to each of us but it is not the same as my immune system attacking itself.  Another is fatigue. Fatigue is not sleepiness, it’s not “I’ve only had two hour’s sleep”. It’s different for all of us but the most simplistic way I know to describe it for someone with arthritis is, if you think of when you had the flu or a really bad infection how drained you feel, that’s because your immune system is elevated trying to fight infection & for someone with arthritis they live with a immune system that “flares” up far greater than flu & a lot of other infections thus creating fatigue. 

I go into more detail about my arthritis here
 
And lastly there are some people that just don’t care, have prejudices of their own or have been influenced by the media & the Government.

In recent years the news & media have become increasingly biased, with certain newspapers writing a constant barrage of “articles” involving a tiny minority of people who have misused the welfare system. This in no way is representative of those who are disabled & never mentions that not all of those with disabilities don’t work, people do. It also doesn’t cover the difficulties that disabled people face trying to get work & how support to help has been taken away which Bendygirl mentions in her blog here.

Another example of how the disabled community is losing support is DSA. A support scheme that is being striped to the bone. Because of a misperception made from the use of a small survey of students that said most students had a laptop upon entering university & so most will now not be provided with one. Same with note takers & readers & many, many more. As someone that studied in uni as my disability got progressively worse & who is dyslexic, I can not see how this will not make it even harder for disabled people to reach their full potential & for it not to have an impact on the student’s health with the extra strain imposed. This is not as simple as “you need to try harder.” You can read more at Spoonydoc’s blog here.

The media & the government often dresses up welfare reforms as something positive, that they will help more people & improve peoples lives. But policies are mostly ill thought out, with support being removed & more people falling through the net.

But as I have covered before, something doesn’t have to be true for people to believe it, as long as it is repeated often enough, history has taught us that of course this is going to skew peoples’ perceptions. You can see my blog post here

These “stories” have impacted the disabled community significantly. From rude remarks to physical attacks. A common remark heard all too often is “I know so & so who’s faking it” on the basis that they see that person for a moment of their day.  

Because of the media & the Government’s influence, at present we have been told that there are many of these “scroungers” lurking in every neighbourhood so perception changes & we try to see what’s often not there, the two faces instead of the vase.

But rarely will you see the effort that it takes for that person to go out & what the costs are. I’m not talking about financial but instead energy & effort because disabled people still want to do things they enjoy, like anyone but the difference is we will pay for it like hell the next day. But because we enjoy it, regardless of the agony we’re in the next day the enjoyment will keep us going & make us feel normal.

But the rest of the time it is learning to pace yourself & find different ways of going about it. For example blogging,  I have witnessed many a blogger being harassed,  told they’re a scrounger & they should be working but what they don’t understand is they only see what is on their screen, the blog or the tweet but not what is going on behind the scenes. People writing from their beds using their phones & assistive software.  Having to change position from their beds to their desks & back again. And of course having no deadline so when your condition throws a tantrum you can rest. Tweeting & blogging connects us to each other & makes us not feel so isolated. 

It has also been particularly hard for the disabled community to be portrayed so badly but as a result of this distorted media, a new type of activism has formed within the disabled community, knowledgeable of the bias “news” that’s being reported we found a common bond. The community listened to those affected by the most devastating “welfare reforms” ever seen & over time produced their own reports (Spartacus Report & Beyond the Barriers) when the Government refused to. More of the media is taking notice & more people are seeing things for how they truly are.

It has made the disabled community stronger. However it has also made a certain section of the community harder on others, people saying things like “we must get on, we must not whinge.” I agree we must be strong, however we must understand that there are people that have just been diagnosed, they naturally want to be how they were before, its a loss & they’re trying to work out how to manage their condition & it’s as individual as we are  So please, let’s be kind to each other.

But to the rest of you, I would like to ask you to come to your own conclusions based on unbiased research.

So for last time I ask you kindly to look again & tell me what you see. Thanks guys :p

Acknowledgements
I would like to thank my dyslexic head for being a pain & not deciding what it wants to write. I would like to thank there for being so much stupid in the world that my head couldn’t decide what to WRITE! It took me a long time to write it & my “mutant” body did not want to co-operate so I’m sorry its late but this is how it goes some times.

One of "those" doctors

Yesterday I read a blog post a friend had tweeted out about a Doctor in the US that has a radio show & what transpired.(See link to Red Hairings blog here)

For me he sums up one of “those” Doctors, that think so highly of themselves & because they are convinced they are an expert, that they don’t need to listen to what the patient is telling them & instead come up with their own random conclusions. I think many with chronic illnesses have met this type of doctor before & I am one of them.

I have had Doctors not pay an ounce of attention to what I have said because they have already made their own assumptions. I’ve been ill in hospital & on several occasions had one of these bozos show up, intent on not listening to a word I would say which particularly on one occasion led to what the hospital calls an “incident” which is code for messing up so badly it could have risked my life. 

Thankfully Mr Techie Carer insisted on a second opinion when I just wanted to go home.

And thats the thing. If you’re in hospital especially in A&E you’re likely going to feel awful & be in pain, couple this with a doctor unwilling to listen & its easy to feel upset & despair. And if you did get upset or cry it seems to validate what they were saying to their mind. I have no doubt that people with mental health issues face even further problems with the “its all in your head” stigma.

But when Mr Techie Carer came into the picture & would meet these type of doctors with me, they still wouldn’t listen but then he would back up what I was saying or repeat it & suddenly what we were saying was accepted. 

I can’t help but think is the magic trick that you need a penis or two people??

This of course doesn’t work every time but usually in these cases I have learnt to play the wait music in my head & tune them out whilst they redirect all their doctrine at him (poor guy) & then we ask for a second opinion from the other hospital because unfortunately when they make up their mind, there’s nothing more to say. 

I’m extremely glad of the support of my partner but people alone & understandably overwhelmed shouldn’t have to go through this. 

However, saying all of this, there are some fantastic doctors like my GP who always has time for you, listens & works with you. These doctors are the ones that trundle away in the background, want to get to the bottom of things, keep everything going & don’t call themselves experts. 

And you may be an “expert” but we all have something we can learn.

My spoonie self & shinanigans

This has summed me up recently. I have come to the ultimate realisation that baby gremlins have been slowly stealing my spoons over time & making off with them, little scamps.

Well since my last update I'm still in a bad flare up, my arthritis has given my bones a heck of a beating but finally I’m back on my arthritis medication (Humira). I’ve always imagined Humira as a sweet guide/friend for my ever confused immune system, forever trying to steer it in the right direction & away from beating itself over the head with a frying pan.

When I finally got the ok to go back on my medication, my rheumy nurse made me an appointment to see the Locum rheumatologist. Obviously they were concerned how my poor bod was fairing & thought it was likely I would need a steroid injection to calm down the inflammation until the Humira was back in my system again.

He was a really nice guy, who had trained overseas & didn't agree with the UK system of steroid injections instead favouring tablets. I can understand why, its a logical argument as steroid tablets give u a balanced dose whereas an injection gives you a large dose that fades off over time.

However, I was reluctant to accept the tablets as I was concerned about how my stomach would fare, as I had had tablets before & knew they could be quite harsh but he reassured me it would be fine.

Sure enough it wasn't & I had to stop the tablets after bringing up dollops of blood as my stomach couldn't handle it. So I went to my GP & received a kind reprimand saying that "You know your body, you shouldn't be on them & not to take them again" & after all of that, I had the injection after all.

A month or two later although the first injection helped, I was still in a flare so my rheumy nurse arranged for me to have another. I held off, wishfully thinking that my Humira would kick in but alas no & I had to admit defeat at my next appointment where she confirmed that I had bursitis in my hips. I can only describe feeling as like gremlins gnawing on the bone....painful. But even this wasn't enough & I had to have another, this time directly into the joint. We'll just have to wait & see if it works.

I never thought when I was first diagnosed, that in my wildest dreams that arthritis would mean this. Oh how I lacked knowledge of what living with arthritis truly meant.


When most people think of arthritis, they think of "creaking joints" & being the equivalent of a human weathervane. But often people don't understand that it doesn't simply affect your joints & different types of arthritis affect people differently.

I have Psoriatic arthritis & associated issues that people often don't know about include fatigue which is really common, that you are more prone to dental issues, tendinitis, inflammation in the eye & other organs to mention a few.

There are often also complications due to medication like being immune suppressed, that can lead to infections & additional conditions along side AKA in my case having an infected dental cyst.

Thankfully the wounds are healing up as they should after surgery & as I know I am more prone to issues, I'm going to be dragging myself to see my dentist more frequently despite how phobic I am & how much I want to hobble out of there as quick as I can!

Also my awesome, if not a bit quirky Physiotherapist arranged for me to have thumb splints because my thumbs slip in & out of place due to my hypermobility, it can be pretty severe so hopefully these will help to stabilise my hand. It also doesn't help that because I had to be off my arthritis medication for over 6 months I now have damage in my right middle finger which along side my dislocating right pinky has made my right had pretty unstable.


Additionally I had to have a manometry pH test. Which first involves going off all the medication that helps you not be sick & then sticking a very uncomfortable tube down your nose & slowly bringing it back up whilst asking you at certain points to swallow sips of water. After this they remove the tube & “kindly” replace it with another which they leave in for 24hrs.

The first test is to see how your throat is working. They found my throat squeezes too hard in the middle which explains why for me, bile randomly comes up of its own accord without me needing to cough or be sick (although that does happen) which doctors usually ask which is the case & are perplexed when I usually say neither.

The other part is to see if there is acid reflux present which for me there isn't (which I knew) but the test did reconfirm bile reflux disease.

And the other main thing I’ve been doing is sorting out my hard drive. Which is no mean feat given that due to my spoonie body I often haven't had the spoons to sort it & that it is filled with duplicate documents so it has got to the point that I really must. We also got a Western Digital wireless hard drive that I’m hoping will do the trick.

I should be doing another post soon when the spoons allow, bye for now!

Disability - Thinking for two more seconds

Growing up I felt very proud of my country, a country that after the war, after going through so much, created the NHS & the welfare system because it was needed & the right thing to do.

Aneurin Bevan said on the formation the NHS that “despite our financial and economic anxieties, we are still able to do the most civilised thing in the world: put the welfare of the sick in front of every other consideration.”

And growing up this is how I felt my country was, that on the whole we would always try to do the right thing, the moral thing. Later, naturally I lost my child-like naivety, I know as a country we have got it wrong but somewhere down the line the truth has been twisted, moulded into something that is not.

Certain sections of the media have perpetuated stories unrepresentative of the majority, twisting stories to create sensationalised headlines, backed up with manipulated statistics.

Stories on “welfare reform”, benefit claimants with 60in TVs, of disabled claimants that dare to step out of the house, even implying welfare is somehow responsible for murder.

And if history has shown us anything, if something is repeated often enough, regardless of validity, people will start to believe it.

As a result, media & public opinion have become so hostile in parts that many disabled people feel guilty or feel that society expects them to feel guilty, like they have done something wrong, whereas in reality they have done nothing of the sort.

And the thing is, why should any disabled person feel guilty?

I have multiple conditions, none of them were my fault, it is rarely anyone’s fault that they become disabled & it can happen to anyone.

When using public transport, I’ve been glared at, muttered about & verbally attacked because I’m a young girl sitting in the priority seat with my walking stick in hand even though I’m more than entitled to be there, just as any disabled person is.

When I have gotten on & there are no seats, people will automatically move for an elderly person that gets on. I have no problem with that. When I was younger & able, I was brought up to offer your seat to an elderly person if they got on & there are none available as a matter of respect. My point is many a time an elderly person has gotten on with better mobility than my own & they are offered a seat automatically, but for me people will wait & stare, the cogs in their head trying to work out, why does a young girl need a stick, inevitably as I start to stumble someone else moves & offers me their seat.

My point is that some people believe that, of course an elderly person will have mobility problems but a young person surely wouldn’t. They either don’t fully understand how & to what extent young people can be disabled, or believe what has been said in the media, that benefit fraud is high.
It has got to the ridiculous stage that people have even been berated in the media for having “nice things.”

The amount of times I have heard people say “Well I can’t afford an iPhone so why should they be able to get one,” is enough to drive anyone insane.

But people don’t take the time to think for longer than a second that it may have been a gift, that it may have been bought before they got sick, that they took out a loan for it or got it on the never, never. Also often people don’t realise that many disabled people do work.

They don’t think for a second that we all have different priorities, you may go out 3 nights a week at £50 a go, whereas the disabled person may not go out at all or very rarely & instead saves their money for their contract phone of £40 which in comparison means they are spending considerably less.

People don’t think for a second that its their lifeline, their contact with the hospital or GP, to friends or family, their ability to socialise & keep up to date with the outside world which is especially vital when enduring stints in hospital.

People don’t think for a second how much technology is an aid for people with disabilities & that this is only going to get bigger.

An iPad or tablet for example is great for people that can’t lift up a conventional laptop & need to move position & location during the day. Voice dictation & predictive text software is improving with every new update, helping people with dexterity issues such as arthritis & hypermobility. Disabled people do so much with technology, often using technology to complete tasks they can’t physically do in real life.

Another topic I have found people to obsess on is that people should be given food stamps or their benefits on a government card that excludes items such as alcohol & cigarettes.

Firstly I will never understand how someone can become so obsessed with making sure that people don’t have certain things & how they find the energy to, but in countries that have adopted these systems, they are always more costly to implement & a black market always forms along side it.

You also would be creating a level of stigma, a way to recognise those who are receiving support & I often wonder if people want that to make themselves feel better about their own lives.

I have also heard people state that “unless you have paid something into the system, you shouldn’t get anything out.”

So what about children born with severe learning disabilities & disabilities? Or teenagers who are diagnosed with a disability? Tough luck?

Yes, some disabled people are able to work but others can’t, with better systems in place & real support, it may be possible to help more people in the future but I don’t think anyone should be penalised because they were born disabled or developed a disability when they were young before they had a chance to pay in. Disabled peoples’ contributions to society are too often dismissed if it isn’t through paid work.

People complain about what their taxes are spent on, I don’t think that will ever change but in comparison to countries with mostly private services, it is so much more expensive added together. Due to the type of system we have, there is no profit made & as many pay in, it acts like a group discount meaning that it is cheaper for all.

People seemed to understand that although you may not receive anything at the time, that it was there for if you were ever unfortunate enough to need it or for any of your family or friends. I didn’t have my disability or illnesses from birth, like most they came later in life & it can happen to any of us.

I think we are too quick to pass judgement, possibly more now through the advent of social media.We used to think deeper about what we were going to say, not to edit ourselves but to form a balanced opinion. However I feel that when we don’t take more than a second to look deeper, like with the media, inaccuracies & prejudices unrepresentative of the majority will continue to be passed off as the majority, This is only going to increase the toxic nature & hostility towards people that require assistance & we should hold on to some of our child-like instincts & embrace a balanced, factual judgement.

I can’t understand how people are attacking the most vulnerable in this country, on a misguided belief that what a minority of the group do, is some how representative of the majority but ultimately disabled people in this country didn’t get us into this mess in the first place & deserve support. It is also not that benefits are too high but that people have different priorities & for some, wages are too low in relation to living costs.

And to the disabled people in this country, you shouldn’t feel guilty as long as you have the conviction in your mind & in your heart that you are doing all you can, you can’t ask for more. Disabled people should no longer feel guilty for peoples’ inaccurate beliefs & should no longer feel guilty because people aren’t thinking for longer than two seconds.

Who cares about carers?

I have heard many a time on forums & such people stating, why should we pay a benefit to people for caring when surely if they care & love the person in question that requires the care, they would do it anyway?

The thing is, yes they all would.

Caring includes everything from round the clock nursing, to completing some tasks & aiding the disabled person to do the rest themselves, to being more of a personal assistant.

It’s not about the grand sum of £59.75, if the short change that the government pays to carers was paid to a care provider to instead provide the ‘care’ it would equate to £1.70 an hour & I can’t see any outside care company providing anything for that, no where near close to the minimum wage.

This you are only entitled to if you provide 35hrs of care, of which there are many carers that provide way over this many providing 24hr care, always on call with very little respite & others that provide less & don’t get the “marvellous” sum of £59.75 but still care & aren’t any less valuable

Carers & the disabled people they care for don’t want pity mind you. Although disabled people have some limitations due to their disability, it doesn’t mean that they don’t have aspirations. By completing the tasks that the disabled person can’t do or the tasks that would take so much out of them, can mean the difference between the disabled person just ‘existing’ & the disabled person being able to concentrate on some of their own life choices whether this be working, studying, arts & crafts etc. Disabled people in this country have valuable contributions to make to society & their carers are vital in enabling disabled people to fulfil their life choices.

Carers also look after friends or relatives that are living with some of the most challenging or terminal of conditions. For a carer to slowly see their loved one taken by dementia for example must be heartbreaking, to slowly lose someone you care about over time.

People also don’t realise how heartbreaking it can be to watch someone you care about so deeply go through pain & illness. I myself always deal with a level of pain all the time, people often think how the disabled person is dealing with their condition but often the distress that the carer feels is often overlooked.

Carers often see & face the hostility that disabled people have to contend with from certain sections of society.

Carers are often the people that fight your corner for what you need, often it can be when rushed to hospital & as you are too ill, you no longer have the strength to argue yourself to remain in the hospital for treatment (you would rather be in your own bed) as the Junior Doctor fails to fully understand your condition & the gravity of the situation & wants to send you home. Your carer fights your corner, makes a “fuss”, insists on being seen by the registrar which when you do, they apologise as the information you had given the Junior had not been shared & now the registrar understands the gravity of the situation & how serious it could have been. The carer had seen it all along, this isn’t unusual.

I always wonder were carers fit into the Conservative’s “Hardworking Britain ?”

I detest this statement, what is your definition of hardworking? Would a person that owns a multi billion dollar company be your idea of hardworking because they make so much money? Would they still be the ideal hardworking person if their company dumped chemical waste & exploited their workers? Would they still be the ideal person if they never saw their family?

Just because a person may not make millions, does it mean that their contribution is any less?

Hardworking has nothing to do with the amount in which you are paid, some of the most important things that keep our society together are done by people that get no or little financial reward. We must focus on making a conscientious society & as well as a strong economy but not one where the focus is on obtaining the biggest financial reward at any cost to society.

Carers are deeply under valued & unappreciated by the state but they don’t care for people because the state tells them to, they see they are needed & are valued enormously by the people they care for. Our ability to care is one of the best aspects of humanity & if carers stopped caring the cost to the state would be enormous. The fact is that even with giving this small amount of £59.75 (too low in my opinion) to the carers in this country, it is much more “cost effective” than if the country had to employ an army of carers. It also means that even a small amount can allow the carer a break & allow them to do something they enjoy. Caring isn’t the same as looking after a loved one that has the flu. Many people often don’t understand the effort that people put into caring often the putting the person they are caring for before themselves & often can’t have a ‘day off’.

The thing is you can’t put a price on the care & support that the carers of this country provide

Carers enable, carers are anyone. They are wives, husbands, sisters, brothers, mothers, fathers & friends & regardless they will always keep on caring.

Carer’s UK

The Big Benefits Row: Facts, fiction & a whole lot of yelling

The show began first with a montage of multiple clips from the bewildering amount of benefit shows that have been produced recently from it being mentioned in the papers, to the news, in documentaries & through benefit bashing tv.

The long & short of it is, the small percentage of fraud that occurs is drowned in the sea in coverage it receives & I think this is the single most important point that people don’t understand. This is a trend that has been seen throughout history, that it is not necessarily a reflection of the reality of the time but instead reflects the attitudes of society which I covered a bit in  The evolution of benefit tv.

Question 1: “Do you think the benefits system is fit or unfit for purpose?”

Apparently 66% believe that it isn’t.

I’d love to know how many people actually know what support the benefit system provides & how many voted unfit because they were thinking instead about even with the countless forms filled in & assessments people have, that many people found “fit for work” are having their benefits reinstated on appeal.

At the start you had Katie Hopkins as usual never pausing for a moment to engage her brain before running her mouth. She started as many have done on this topic trying to pass off prejudices & stereotypes as fact but was pulled into reality by Mathew Wright.

Then Mathew Wright explained that they wanted to separate the facts from fiction.

FACTS?!?!?!?

Excuse me while I wet myself in delight at a show that is presenting the facts instead of perpetuating myths further.

Matthew Wright highlighted that tax evasion is far greater than benefit fraud (with the resources dedicated to tackling this far lower) & Annabel Giles spoke brilliantly even with Katie attacking her in a childish voice that she “wanted to be a model & didn’t make it”.

Katie went on further about people having multiple children & was quickly told it is a very small minority, not the norm. This was followed with people on housing benefit living in posh neighbourhoods, again not the norm & this was finished of with remarks about how “hardworking Britain” had had enough of going to work & seeing people staying at home, this being said without any thought to what the person behind the curtain may have to contend with.

Question 2: “Do you think the portrayal of people on benefits is fair or unfair ?” A close split.

Peter Stringfellow like many doesn’t consider a pension a benefit. He said that his main concern was the “abuse, not the majority of people. I’m looking at people over there” (pointing to the people in wheelchairs) “that deserve everything they can get”. But when Mathew pointed out that the abuse was small he replied “Not it’s not small.”

I doubt that he meant just people in wheelchairs but people with disabilities as a whole. However so often people don’t understand how significant invisible & variable conditions are, how much people struggle to walk on crutches or with a stick & the effort, pain & discomfort they go through. This is particularity important when people in the latter have to use a wheelchair to get around, this can often be on occasion when their condition is particularly bad or dependant on the situation. It can also be when they go out because their condition is such that they can’t move quickly, safely or the pain & exhuastion would be too much & can’t simply “hop out” without a great deal of difficulty.

Ironically this occurred just before the show when Sue Marsh had to leave her chair outside then struggle up into the seats because the disability provision wasn’t adequate. People often don’t understand the effort it takes to do things that people take for granted & the amount of time it takes from you to recover which Sue details in her post about her experience about being dropped from the panel & the lack of provision.

Then there was "White Dee". I thought she was either going to blow her top or say her piece, keep quiet & let Katie Hopkins tie herself in knots which she did beautifully.

Annabel Giles pointed out, that if ‘White Dee’ was well & didn’t have depression of course she would be working & Dee agreed. I can’t understand why some people believe this is the “optimum lifestyle choice” whereas in fact they have no choice at all because they are ill.

Question 3: “Would you support or oppose tougher means testing & rules about claiming benefits ?”

Apparently 66% were in support & I wonder greatly how many have any idea how difficult, demeaning & time consuming the whole process is.

Rachel Johnson was a pleasant surprise, coming from the point of not knowing much about her, she commented on the worryingly high percentage of people being sanctioned on JSA & that for people to get help from a foodbank they need a voucher to Edwina Currie to which she replied “only some of them”

Matthew saw this as a great opportunity for Jack Monroe’s opinion. It would have been nice to have heard more of what Jack had to say, unfortunately Edwina was intent on childishly shouting her down.

Jack explained that “You can’t rock up to a food bank & just ask for some free food” but Edwina disagreed. Jack pointed out that she works with the Trussell Trust, the biggest foodbank organisation in UK which in order to get help you need a voucher.

Then for some bizarre reason Edwina said they only run one & when she’s asked if she’s ashamed that people beg for food, she says no.

Jack started to make a reasonable point about the economy & bankers when she’s cut off again by Edwina.

"You come from a rich family." Jack explains again, no she doesn’t. "Yes you do come from a rich family," Edwina says with all the finger pointing of panto.

I had read that Jack had said these accusations had been happening before the show & she said she wanted to say her piece which she is more than entitled to do. She explained that her mum was a nurse, dad was a fireman & that they were hardworking ‘blue collar’ workers.

Edwina throughout Jack trying to speak made countless rapid interruptions, to the point she spoke so quick at times you could barely make out what she had said. It’s clearly obvious when you’re interrupting someone like this you want to stop them from talking, bate them & nothing more.

Edwina continued with countless interuptions about how they both went to grammer school….so what? Many a kid from council estates did also & that it was Jack’s grandfather who was “rich”, that he was a big property owner. By this point Jack, obviously upset, stated he had died with Edwina stating that she knew because she had seen the obituaries

Creepy.

Even more so when you know that she had taken the time before the show to search through Jack’s blog, to find a post she had done & tweet it out before hand. It also shows that before the show she knew she was likely going to bring up her grandfather, to get personal maybe because she didn’t have any defence. She says she admires Jack but her behaviour says anything but.

Also because she wasn’t willing to listen she missed a vital point

Jack is anyone

Jack didn’t come from an abusive family or a family dependent on benefits. The government rhetoric is if you work hard & get on you will be fine & in the unlikely case that you do fall, the system will protect you but it doesn’t and in Jack it proves it. See Jack’s heartfelt post about what she didn’t get to say.

Next they played a clip of “On Benefits & Proud” featuring Emma & Sophie. They explain the programme made them out to be something they’re not, that the system has helped them a lot & no that it wasn’t a comfortable existence.

Yet again, Edwina interrupts “go & get a job” repeating it over & over.

She then got a massive piece of her own medicine, the girl turned around quick as a flash “gimmie a job, innit” repeating it over & over. It reminded me of some Catherine Tate sketch that I couldn’t help but be pleased to see on this occasion.

Question 4: "Would you support or oppose new immigrants being allowed to claim benefits in the first year in the UK?" 76% oppose

Weirdly there was applause from the audience. Often there has been, in the same way as with benefit claimants a lot of stereotyping & myths surrounding immigration issues which people believe including those on benefits. Often pitted against each other, some benefit claimants believe that the reason that they can’t find a job is due to immigration.

Owen Jones brought up points about bankers, tax avoidance & the stereotyping of immigrants & the good that they have done for this country is often over looked.

I think the issue of immigration needed to be on a separate show (which Channel 5 are apparently going to do) as it felt squeezed on to the end, they didn’t have enough panellists to have a proper debate or the time & like with welfare it is yet another issue that has been a used as scapegoat topic.

The fact that they presented facts at the start of the programme was uplifting, I think it is truly disturbing how many programmes are aired with no reference to the actual facts of matter but instead just help perpetuate myths further.

There wasn’t enough time to address everything in the detail that it needed to be. A 45 minute show can’t undo the countless months of government opinion, tabloid “news” & benefit bashing tv, much more is needed to get to that point. People didn’t understand or want people like Katie Hopkins & Edwina Curie up there but the fact of the matter is it’s exactly people like Katie & Edwina that are helping perpetuate myths further because they either do not care about the people affected or that they don’t understand that things that they are annoyed about are myths or don’t represent the majority. When you put people like Katie & Edwina on a show like this against people that know their facts, they show themselves up to be the narrow minded people that they are….as long as people can speak that is.

Fleetstreetfox’s article on her experience

Owen Jone’s article on his experience

Evolution of benefit tv

In recent years there seems to have been a greater focus on programming that covers topics that involve illness, disability & social deprivation.

It’s not a new phenomenon, these types of programs have always popped up from time to time & it’s well known that what the media shows us of these times may not be the reality but often will instead show the attitudes of society.

I’m very divided on these shows, I love documentaries, I will watch documentaries that are controversial & opposite even to my beliefs. The reason why, is that I firmly believe that the instant we cut ourselves off from knowledge, from the possibility that we may be wrong, we will never learn anything new.

I know that some people didn’t like the way that these shows had been filmed, I know these ‘shows’ have ranged vastly from benefit bashing tv made solely for entertainment to valuable insights to what the disabled & disadvantaged are facing at that time but also the public’s perception.

Unfortunately through over reporting of certain issues, certain sections of the media have given the false impression that fraud is rife, that there needs to be a crackdown on the ‘wave’ of benefit cheats but ‘real’ disabled people will always be protected. Unfortunately there is also a further section of society that believe that benefits should only be given to the ‘housebound’ because if people can get out of the house then why don’t they get a job? People don’t understand how exhausting it is to function as a disabled person & that no two are alike. They look at the surface & no deeper.

I know that some didn’t like Channel 4 referring to Paralympic athletes as ‘Superhuman’. It has unintentionally, to a degree resulted in people becoming more misguided, believing that Paralympic athletes have got ‘passed’ their disabilities because they were just more determined to succeed. Whereas in reality these Paralympians rely heavily on support behind the scenes & benefits to get them where they are. And that it’s not because one simply tries harder but more that a disability can effect many individuals, in many ways & not even to mention the fact that disabled people may not want to do athletics but instead may be a talented writer or artist. I still however think they are awesome for what they do.

I really enjoyed The Last Leg, the hilarity & stupidity of things. I loved how the show tried to engage with people with the show’s “Is it ok ?” questions such as “Is it ok to punch their friend in a wheelchair if he’s a n00b ?”.

Then you have 999, What’s Your Emergency, that highlighted beautifully how much strain the ambulance service is under & how much more it will be in the future due to the significant NHS & welfare cuts which will mean that even more people will likely fall through the net.

But unfortunately any good work that is done on one show can be undone on the next.

BBC’s Saints & Scroungers always shows two cases of benefit fraud to the one ‘Saint’ helping those to get the benefits they need. Although it is great that these people help in times of crisis, there is no disclaimer to explain how low the rates of benefit fraud are & that the show’s ratio is in no way representative of actual statistics.

Then you have Channel 4’s programme “Benefit Britain 1949”.

Now I’m ‘sure’ that Channel 4 were trying to show that the welfare budget can’t be carelessly cut & that people have been & are being affected by cuts detrimentally. That although the original system was much more tailored towards the individual, a good thing, it was only supporting those they deemed ‘deserving’. Unfortunately when reading peoples’ reactions to these types of programmes on Twitter, this is a theme that keeps cropping up. Unfortunately I think this show whilst trying to show why we had moved on instead gave more titbits to those that believe all the inaccuracies.

Also it was a different system to today, a different time, society isn’t the same & so consequently, it was often out of context. I also found it odd that the show split the claimants into ‘sickness’ & ‘disabled’ categories as often these go hand in hand.

 Yes, it did not help matters that the sickness claimant came across as little miss gobby, very rude & aggressive, hardly the average claimant but this may have come across a lot worse due to editing. However I can not stress how much my heart sank when I saw how people with less visible illnesses were being portrayed through this women.

It’s a shame that they didn’t chose someone else that could have highlighted truly how debilitating a invisible condition can be, as this is something that it seems the general public fail to understand.

Then there was the programme ‘We Pay Your Benefits’ which saw tax payers following claimants to more or less ‘judge’ what they feel is acceptable for people to buy & do using their benefits. People now have obstinate objections to people having mobile phones, internet & family pets. These previously weren’t seen as a luxury with the exception of probably family pets but people seemed to understand that people mostly had family pets before becoming unemployed & understood they were a key part of the family & a massive comfort. Also mobile phones & internet were seen as a necessity & now people believe that they are a luxury. It seems so illogical in this day & age where mobile phones & internet are such an integral part in life that people can think this way. I found it sad that people seem to have lost sight that the system we have supports the people in our society who need it the most, that it is there for them in case the worse did happen & that fraud is low.

And finally we have Channel 4’s ‘Benefit Street’ which if you were to believe was typical representation of people claiming benefits, which by the looks of Twitter a lot did, the majority of claimants would be committing benefit fraud, shoplifting & growing cannabis in their spare room to pay the bedroom tax. There were death threats after the show on social media & the whole filming of the show lacked responsibility. However it did highlight how you can’t just simply beat people with a rod & expect them to change, people need opportunities & the right help, but also some people just won’t change, that’s human nature.

The second episode showed immigration in the UK. It highlighted the racism & the inaccurate beliefs like they can earn £2,500 a day. However it also showed how immigrates without permission to work are so easily exploited & how when they report this to the police, they fear major retaliation but many people on social networking sites again didn’t see this, instead fixated on inaccuracies.

The third episode followed a young family with children. It portrayed a young couple that seemed to struggle with parenting. Its not a surprise that the kids behaviour was challenging when given a sugar coated cereal at midnight, with one parent telling the other to f**k themselves & ‘Fungi’ & other drunken idiots outside the front door creating a bad influence.  But because of the way this documentary was filmed & because a proportion of society that seems to think if they witness one thing happening on TV, that this some how means that this is representative of everybody in the same situation. Just because a child has either a single parent or young parents does not mean that they’re not going to bring up their children correctly & the rest of parents out there have just as much chance of messing up the child’s up bringing or not as anyone else.

The episode did also show that the couple was trying to improve their child’s behaviour, although I doubt how much of the public remembered that as much & a later article stated that the couple have learning difficulties which isn’t mentioned in the show.

I understand why people are upset about about these “documentaries”, some are upset that documentaries on these topics happen at all, others are upset that a valuable opportunity to highlight a issue has been lost in favour of being exploitive & creating “entertainment” instead of a documentary. In these cases they usually lack the full facts, are shown out of context & people within the disabled community face the backlash as a consequence.

However if we don’t discuss these issues we will never move forward but the public needs to be more aware that it is impossible to produce a doumentary that isn’t bias in some way because the individual is bias & that viewers should show more common sense & take these shows with a pinch of salt. It is also up to film makers to always maintain a level of detachment in making a documentary & to make sure, as much as possible, that the topic is portrayed in a true & balanced light.

I think there were many failings in making Benefit Street, particularly the disclosure of the actual street name which made these people more of a target so much so that a number of the residents have been moved. Also that it was made by an outside third party company, that they obviously lost control over it but they had responsibility to air it or not.

With the airing of Benefit Street it has shown that certain sections of the media have become so toxic over the subject of welfare but this is only allowed to continue because people blindly believe in these misrepresentations.  If people on benefits & the disabled were instead an individual, in certain countries I have no doubt that they would be pulled up on slander or for liable way before now.

The fourth episode airs tonight to be followed by a final episode & TV debate which is supposed to let the participants have their say unfortunately we will have to wait to see if this is a intelligent discussion or if this becomes just more viewing fodder.

It has taken me a while to write this as I hadn’t intended on writing this much in the beginning but have been adding to it little by little as more and more shows have been produced. Originally it was supposed to be on the first ones I watched but as time goes on there seems to have been an increase in this type of programming & I thought it interesting to note the effect of all these shows combined . With this increase it seems like certain sections of the public have lost sight that the fraud rates are low & that this system is in place to assist in times of need, as it should be. They seem content on judging on face value & not realising they don’t have the full facts at hand, how would you like this if it was done to you?