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

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!

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!

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?

Food banks, poverty & a parallel universe

So I watched most of the food bank debate. Not at the time as my bendy spoonie arthur body wasn’t playing ball.

It was a sad sight to watch as Labour passionately recalled stories of people, in desperate need in their constituencies. As Labour were trying to make their point the coalition benches laughed, brayed & tried to shout them down as they attempted to highlight the crisis that is unfolding in this country, one of the richest countries in the world where people are being propped up by food banks, charities as there government continues to fail them.

The coalition benches made the whole Charade feel like the Goverement was implying that poor people are just darn stupid, we’re beating them with this rod with all the welfare cuts & telling them to work so why arn’t they? Their problems would be resolved. If they are at food banks they deserve nothing more, it is of their own doing.

The coalition further blamed people for poor budgeting skills but didn’t understand that for many, when they reached the foodbanks they have fallen so hard & so quickly & for others they have already striped their outgoings down to the bone. If the end line is that you need £60 & you only get £40, how are you supposed to win? Just demonising people further isn’t the answer.

Most of the coalition MPs come from much more privileged backgrounds, that have never had to deal with these problems. These MPs live in a world where they get a food allowance, expenses & subsidised bars. They have never had to hardcore budget like the people that end up at food banks do. They’re in a parallel world were they constantly live with their fingers in their ears & take their party’s doggy statistics on face value.

The coalition put these policies in place & they’re just not logical. If you speak to most, they agree that the system needed reform but it needed to be fair, the coalition need to accept that there are people that are just not able to work & that working isn’t the only solution out of this kind of situation, that work doesn’t always pay which can be seen by the increased number of people in work, forced to rely on food banks as wages are low & commodities high.

The coalition throughout continued to state that the food banks began under the last government which is indeed true but the explosion in the number of food banks under this government demonstrates how much policy is not working & that the simple truth is, that if social policy was better there wouldn’t be anywhere near the demand that there is now.

If anyone agrees that its ok for people in this country to have to rely on food banks, for children to be so grateful that they were given chocolate because its one of the best things they have seen in a while & that for the red cross to be doing its first appeal since world war 2 for the people in the UK, then remember this; anyone can find themselves in this situation & if you’re saying to yourself not me? there have been many people before you that have said the same & yet found themselves in a position they would never have seen coming.

These MPs call each other honourable members, if this is honour, its not an honour I recongnise.

17# Weekend cute, humour & awesome

For everyone that feels this way this week.

My body has not wanted to do anything & hasn’t co-operated at all due to my arthritis flaring up & my hypermobility playing up. Don’t get my started on my stomach >.<

Hope everyone has a brilliant week to come

(I do not own the images but respect the awesome)

A Spoonie body, politics & a cute fluffy bunny.

So I haven’t been able to do much that I’ve wanted to do recently as my body has been taking its sweet time to decide whether or not to heal after my surgery & because I have been off my arthritis medication for so long my body is taking a real battering with a lot of inflammation in addition to what I normally have. Also with my arthritis flaring up the fatigue has been worse with it. Fatigue as always is so fricking inconvenient, with you not being asleep nor awake, losing hours at a time.

It’s not been made easier when I have had to go out, mostly to hospital appointments & such. It’s not like its a new thing, ever since just before the last general election this kind of occurrence happens quite often whilst we’re out. When I get on the bus people look at me & see a girl with a stick & more often than not will take more time to judge the legitimacy of my condition than see that I’m about to topple over because the driver hasn’t waited until I have found a seat & I’m struggling to find a seat, as someone is lounging across the disabled seat or the “i’d like a bit more legroom seat”

So often I see these judgmental faces of people that don’t know me. It is often that people won’t offer you a seat until they have seen you nearly topple over because the bus driver doesn’t see you or is impatient and even then it is often begrudgingly.

Often me & Mr TechieCarer will be sitting on one of the disabled seats just waiting for the glares, the comments & even altercations to occur. The glares always happen even though my stick is clearly visible. We have started to talk to loudly about my condition to each other which usually suffices to quiet them down & realise that their judgement is incorrect. We have now come to the point that we will stick up for ourselves, even though we shouldn’t have to because arthritis & all the other conditions I have are not my fault & I have nothing to be sorry about.

I know this isn’t just me & although I have had people be verbally abusive, apart from one guy threatening to sit on me, thankfully nothing physical has happened. I also am grateful that there are people that are kind & thoughtful & they restore my glimmer of faith in humanity every time. I know that other disabled people have delt with much worse, thankfully my local bus company have started a zero tolerance policy towards disability hate crime which is greatly needed to show that this isn’t tolerated.

Another topic I have seen people have a problem with is people on benefits that have a mobile phone &/or animals. I might go into more detail about this at a later time but some people are more obsessed about other people having mobile phones or pets than being happy in their own life.

They don’t understand that mobile phones keep disabled people in contact with the hospital, Doctors & Carers & let them stay in contact with the outside world when their condition doesn’t allow them to go outside. Similarly pets give people confidence, comfort & companionship. They can also greatly help a disabled person reduce their awareness of their pain, even if only for a brief moment.

http://diaryofabenefitscrounger.blogspot.co.uk/2013/12/just-watch-this-please.html

This links in with an article where Sue Marsh highlights a film which shows how vital the Independent Living Fund is for people to provide basic things that able bodied people take for granted. It is also shown very clearly how much pets mean to disabled people & that no one should be this frightened of losing support.

I can also say after we sadly lost our bunny at such a young age, we did get another. Hes now about 7 months old & is doing really well apart from a very lucky scrape around a week ago.

We noticed his head was tilting to the side & one eye was rolling to the back of his head. I knew this wasn’t a good sign (head tilt) so we rushed him to the vet & the vet said it was either concision or Encephalitis (inflammation) caused by the parasite e.Cuniculi. They believe that over half of rabbits carry the parasite & are asymptomatic all their lives, with about 6% where the parasite becomes a problem causing inflammation. They think that its more likely to be e.Cuniculi because even if you held his head his eye still continued to move. He was given an anti infllammatory injection & panacur to control the e.Cuniculi.

Amazingly I can say that within 1hr & half his head tilt had resolved, as my vet said you wouldn’t know he had head tilt only hours before. He will still have his panacur for a while yet but with head tilt it is so vital that they get to the vet early. Although head tilt can be caused by a varying degree of underlying issues, for e.Cuniculi the quicker they get to the vet, the quicker they get anti inflammatory medication, the better the chance of reducing permanent damage.

So here is the little cutie




And finally the WoW Petition surpassed 100,000 signatures! I do not believe that the government will necessarily do anything positive that the petition asks for but the more we can highlight these issues & the more we can bring these issues to the attention of the general public, the better they will be informed of the injustices that are occurring.

http://epetitions.direct.gov.uk/petitions/43154

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……….

My wonky ‘OS’, hospitals & randomness!

So I haven’t done any posts recently, mostly because my uncooperative “OS” has been malfunctioning as it does, making the most simple of tasks less straight forward as anyone with a disability can relate to.

This has included but not exclusively, inflammation in my shoulder with my wrist & hip slipping out of its socket plus tendinitis in my foot.

Also I’ve had “trochanteric bursitis” which I have to say I had never heard of but again it’s more inflammation, this time in the hip joint. I’ve been having pain running down my tight bone & was beginning to think it must be my head until my rheumatology nurse said otherwise.

I think that after years of having to cope with my previous rheumatology team that instead of helping you, made you feel continuously guilty & that you must have some how caused your immune system to ‘malfunction’ & so there for you should feel guilty about your arthritis.

I can’t remember how many times I had come out of an appointment crying, feeling utter despair & how many times I had felt that because of what they had said implying the pain must be in my head & no one wants pain, so why wouldn’t it just go? I had reached the point that I would rather grimace in pain than go back into that room.

So I went to my GP because I knew deep down that what they had been telling me was not true & that I wasn’t getting the treatment I needed. He was angry & asked for a second opinion at a neighbouring hospital. I went and she was NICE, so nice & kind & agreed I wasn’t getting the treatment I needed. She asked me did I want her to write to my consultant or did I want to move? I ripped her hand off, I wasn’t going to go back to that hospital.

It’s not perfect, my new hospital but I think a nice touch is them not laughing at me & although even with the new treatment I’m on Isn’t fully managing my arthritis as I still have inflammation & joint damage its still more effective than what I was on which shows how important getting treatment is.

Also I some how managed to dislocate my little finger with nothing more than the slightest of pressure. Thankfully I managed to pull it back into place which my GP agreed was the most sensible thing to do & to do the same if it happened again, which although i’ve had some close calls thankfully it hasn’t as of yet.

And I think that the sad thing is that when he believed me without question that it was so nice. Not because I was hurt but in the past when i’ve told doctors something happened including my old rheumatologist it wasn’t uncommon not to be believed. Which I find insane & through them not believing me I feel like a fraud but also suffered from not getting the treatment I needed.

The thing is although my treatment has improved since leaving the other hospital my treatment is still lacking in areas. NHS resources are badly stretched & this vital service seems to be struggling. One of the other rheumatologists in the team has left, which has meant that my rheumatologist is taking on more patients even though they are deeply stretched as it is. There seems to be a pattern in the NHS when people aren’t “let go” the staff instead aren’t being replaced when they leave which I hope isn’t going to be the case.

So will patients suffer? undoubtedly yes in my opinion because as much as my rheumatologist is great even she doesn’t have enough time to make certain that I get the correct level of monitoring, that any non standard tests are issued & that issues are investigated deeper.

They are trying their best to keep everyone’s head above water reacting more to people in the more extremes of their illness than having the ability to keep people stable or to improve difficult cases further.

Don’t get me wrong, I am extremely grateful for the NHS even when the service is patchy as I know there are people left without even basic health care in certain parts of the world. However we should strive for better whether a condition can be stabilised or not. People should have as much health care as they need to improve their quality of life in what ever way possible, however small.

I have experienced the best & worst of the system. As I’ve mentioned my last rheumatology team was abysmal, where as my new Physiotherapist is awesome & is as ‘special’ as me. She really wants to help anyway she can & so seems to have invented a ‘pick a mix’ method to treatment.
I apologise for any rambling, this post was written over a few days & a more coherent service should resume shortly………….


……………But no promises ;)