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.