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!