Guest post on a good friend of mines blog!
Dear Department of Work and Pensions – Sort out the system.
Just before I get into this letter, I’d like to explain exactly what it is you’re about to read. Over the past 4 months, I’ve been battling my case with the Department of Work and Pensions in an attempt to get some support for myself during a time where, even now, my health is pretty unpredictable and unstable as to what’s going to happen soon. Unfortunately (people who have applied for “Personal Independence Payment” will understand this part) the processes and “descriptors” the entity use to decide whether you are healthy to work are incredibly generalized and don’t take any consideration to a persons records they provide (having provided extensive amounts of evidence from all medical professionals I see) and, to be honest, the departments attitude and handling of the situation has been flippant. With that being said, here’s the letter:
Dear Sir/Madam,
I am writing to yourselves today to express my intention to utilize my right to appeal your decision to deny my claim to Personal Independence Payment on the 12th of November 2015.
Upon reading your report and descriptors, I find that the system of which is used to describe and therefore decide how much support needed to my individual claim is not only flawed but incredibly generalized. I understand that such descriptors may be suffice to some individual’s claims but I believe that my claim is somewhat different to others. Whilst I can’t argue with some of the decisions made based on the descriptors, I can however argue that a majority of such descriptors are very much a hindrance and limit my ability to accumulate “points” in order to “score” a total in which is need to suffice a decision to grant Personal Independence Payment. An example would be the “Preparing food” descriptor. Despite in my original form stating that, due to gripping and the lack of strength in my hands due to Osteoporosis, I have to use utensils which are lightweight and my inability to open cans of food or peel vegetables (which was something asked in the form under “Do you require any special utensils to prepare/cook a meal” or a question along that idea) but when asked about preparing food at the meeting with Capita, nothing was asked or noted about such answers. Another example would be under the “Managing toilet needs or incontinence” descriptor. Having Ulcerative Colitis (an Inflammatory Bowel Disease), managing my toilet needs or incontinence is a day in and day out thing I have to deal with. I find myself always needing to be close to a toilet and needing to always look out for toilets or restroom facilities whilst in public to avoid the embarrassment of incontinence or “having an accident” in public. To have scored a 0 in this descriptor is not only nonsensical but also slightly insulting that a disease I suffer from extensively isn’t taken as serious as I feel it should as reflected in the score given in the descriptor. I also feel that because the conditions I suffer from are what would be called “invisible illnesses” and that (currently) whilst I have maintained most faculties of the decisions “descriptors” such as “Taking nutrition”, “Washing and bathing”, “Communicating verbally” and “Reading and understanding signs, symbols and words”, I believes it’s evident that these conditions I stated were possibly not looked into fully and therefore labeling me (as it comes across in the original decision makers letter) fit for work which I strongly disagree with.
In addition to my form, I also included copies of correspondences from the hospital to both myself and my GP which not only detailed the condition of my health and illnesses I suffer from but also how my body was reacting to treatments which were being administered. I also believe that both my GP, [GP’s NAME] and a consultant at the Leicester Royal Infirmary, Dr [GASTROENTEROLOGIST NAME #1], wrote extensively also on my behalf to help support my claim and detail my conditions deeper in medical terminology with a statement written by Dr [GASTROENTEROLOGIST NAME #2] at the Leicester Royal Infirmary also possibly being sent to yourselves. The CAPITA interviewer did state that my claim had included “around 14 pieces of evidence” which I believe should be looked at and reviewed again as per request of this appeal with Dr [GASTROENTEROLOGIST NAME #1] also offering his knowledge to my case additionally if requested by yourselves.
Since the beginning of this process, I’d also like to state that circumstances regarding my claim have slightly changed. I have now being transferred to Queen Elizabeth’s Hospital in Birmingham to undergo more specialized analysis in regards to my liver diseases (Auto Immune Hepatitis, Primary Sclerosing Cholangitis and Cirrhosis) to seek a better treatment to help treat the conditions with a possibility of surgical procedure if a suitable medication cannot work. I have also been referred to a dietitian under the Leicester Royal Infirmary to help me put on weight as, where I currently stand, I’m underweight due to my digestion problems caused by my Ulcerative Colitis which is also being looked into much more as a result of the lack of positive change/reaction bought on by medications and treatments I’m currently prescribed.
I ask that, as part of my decision appeal, you re-evaluate the evidence presented as stated by yourselves in the original decision letter that “I made your decision using information about your illnesses and disabilities including details of any treatment, medication, test results and symptoms. I consider this information is the most suitable available and enough to decide how much help you need” and take opportunity to contact Dr [GASTROENTEROLOGIST NAME #1] or any medical professional I’m under personally to speak further on my illnesses.
Yours Sincerely,
(This is where the letter ended)
Links to information about illnesses mentioned:
Ulcerative Colitis – http://www.crohnsandcolitis.org.uk/about-inflammatory-bowel-disease/ulcerative-colitis
Primary Sclerosing Cholangitis – http://www.britishlivertrust.org.uk/liver-information/liver-conditions/primary-sclerosing-cholangitis/
Cirrhosis – http://www.nhs.uk/conditions/cirrhosis/Pages/Introduction.aspx
Auto Immune Hepatitis – http://www.britishlivertrust.org.uk/liver-information/liver-conditions/autoimmune-hepatitis/
Facebook – https://www.facebook.com/whenfategivesyoualemon/
An eye for an eye makes the whole world blind
With the latest news that Britain will be joining in airstrike missions and operations over Syria, I ask each of you this question: Will it be worth it? Will the lives of innocents that will be lost in each of these strikes be seen as a worthwhile sacrifice to eliminate potential IS who, ultimately, was a product of wars led by the west? Will the financial cost to Britain be better off spent in yet another war which, if history is to be noted and repeated, may become another conflict where many innocent lives are lost, hatred and determination from terrorists increases and countries becoming ravaged as a result of a relentless operation of strikes be a worthy monetary sacrifice in a way that is, literally, fighting fire with fire? Wouldn’t a better way to spend the approximate estimate of £508,000 that it costs 
to fund an airstrike mission (based on these figures posted by ilmfeed.com – £210,000 for a 6 hour Tornado mission, 4 Paveway bombs which cost roughly £22,000 each with an additional 2 Brimstone missile strikes costing an additional £105,000) be to help fund further progress and increase budgets to parts of society that see a day to day shortage of staff with the emergency services coming to mind which, as shown in the attached picture, could pay the salaries for departments which media outlets are only too keen to write articles on how stretched and overworked public sector workers are?
I’m sure by reading just that introduction, it must be blatantly obvious that I’m against the decision UK parliament made in a staggering (and shocking) majority vote with a 174 vote gap with a total of 397 MP’s pledging support to the proposed (now active) plans to attack what they call as “Daesh strongholds” which, whilst being a location to which IS CONTROL and bully, include many innocents of whom live there that will now live under additional fear of the destruction of their homes or being injured or killed in such operations doesn’t seem to resonate any sort of thought
that such attacks will only help drive the cause IS wish to portray that the western world is the enemy and help strengthen support for their warped, barbaric and twisted cause and ideology. This being not only the opinion and many of which have been shared under the “#NotInMyName” social media trend but that of UK’s Prime Minister, David Cameron, of whom quoted on the 4th of October that Russia’s bombing campaign will “lead to further radicalization and increased terrorism and terrorist threat” (with a video link to the interview in which the quote came from being available here – https://www.youtube.com/watch?v=vWVpRB4JTTo). So why is it now that Mr Cameron has had a change of heart 2 months later? Possibly to show a strong alliance with the French to bring the war to so-called “Daesh” on a united western front to exact revenge on the bloody and barbaric Parisian massacre of Friday the 13th of November 2015 which killed 130 innocents and injuring a further 368, with 80-99 critically injured. In turn, this cycle and ideology that the west should embark in a “eye for an eye, tooth for a tooth” mentality to fight such a battle will only end in more bloodshed.
Instead should we not be bringing more attention to the war to IS on a platform which, unlike any other war, has been relied heavily on before; The Internet (in particular through encrypted messenger services on the dark web and social media accounts on platforms such as Twitter, Facebook and YouTube)? Under the hashtag #OpIceISIS, Hacktivist group “Anonymous” have shown just how quickly IS-related social media accounts can be identified , with an estimated 25,000+ IS related Twitter accounts alone, being taken down disrupting communications and IS propaganda being shared whilst also cutting a vital part of how IS has become able to spread it’s deluded ideology to brainwash and recruit individuals across the world. IS have also been able to communicate their plans of terrorism through channels on a messenger service named “Telegram” which has a similar features to apps such as WhatsApp or Kik but allows for anonymity through it’s usage of end-to-end encryption, with Anonymous assisting and identifying 78 IS
channels which have now been blocked by the messengers creators. These means of attack have proved to be successful in identifying not only the identities of IS recruiters and terrorists through “Doxing”, in disrupting online activities of IS on social media platforms but also foiling potential ISIS plots which were uncovered by Anon with the information gathered privately reported to several security agencies where plans were uncovered including the FBI. All this being, in my opinion a vital part of the war against IS but without a single drop of blood shed by Anon.
I’m not saying that the evil known as IS can be defeated solely through defeating them on the cyberspace frontline but if such plots are being uncovered with terrorists being able to be identified the internet, the west should look more into trying to adopt such tactics to help contain the spread of IS’ propaganda and foiling potential plots by taking appropriate actions against potential perpetrators. Though I can’t offer an opinion on how a war should be fought physically, I know that an “eye for an eye” attitude to it won’t help relations in the middle east and will only drive the determination of IS’ barbaric plots and twisted ideology to succeed in creating a “worldwide Islamic (and I use that term very loosely as their actions are anything but Islamic) State”.
To finish this post, I’d like to link a video of a speech by Tony Benn in 1998 during the conflict with Iraq which has been circulating social media over the past few days and echoes the ugly truth to war 17 years later – https://www.youtube.com/watch?v=HfXmpJRZPYI
“Mankind must put an end to war before war puts an end to mankind.” – John F Kennedy
IBD Awareness Week – My fight 1 year and 7 months down the road
Today marks the start of IBD awareness week (December 1-7) and I thought I’d make a post regarding my experiences of Ulcerative Colitis, the form of bowel disease I have, and how it’s changed my life. As quite a new sufferer of the illness having only had it since the 28th of April of last year (in comparison to the amount of time people I’ve met, both personally and through the internet), I know only too well how much this disease can take its toll on a human, both physically and mentally.
The physical effects can be very painful and, at times, pretty embarrassing. Whether it’s the constant stomach pains (which if you’ve probably ever met me, you’ll probably at some point seen me stand in a place for about a minute like a lemon whilst the pain passes), the change in diet people have to go through to help alleviate symptoms which, touch wood, I’ve only had to be careful with high caffeine energy drinks and high street coffee chains’ Hot Chocolate, the weight loss and weight gain which is mainly due to steroid medication used to control the disease and the fact that anything I eat will be exiting my body pretty soon after or dropping wind that could probably kill your pets (seriously the most embarrassing symptom you can have and believe me, I’ve cleared rooms!). Though I must admit that I can see why that last point can come over as pretty funny, it’s extremely embarrassing as it can come at some of the worst times and, in personal experience, only gets worse when I’m stressed or nervous. At the moment, my illness is currently touch and go having had a pretty bad flare a few weeks ago (showing it’s presence at a WWE house show I was attending) but I know that the physical effects of this disease can be much worse and can result in surgery and being on high dosages of medication (the one that stands out being Prednisolone, a steroid which, in my case at least, can cause extreme mood swings and depression).
As I mentioned earlier in this post, this can also (I believe) cause horrible effects to a person’s mental state due to the physical effects mentioned above. I never go out socially due to worry of “what happens if something goes wrong?” or “where’s a toilet? I might need that” and just the fear of something embarrassing happening scares me. Given, it’s not happened yet, but it could. Hell I’ll be honest, I’ve had accidents before, two if I remember correctly with one being in public which made me want to cancel plans at what I was doing and just come back home. Due to this, I have pretty much only allowed myself to go out on certain occasions, which I usually look ahead in time if toilet facilities are available and always make mental “oh there’s a toilet there” note whenever I’m out just to avoid getting caught short.
I must say that, however wrong this may sound, this illness has taught me a few things: I’ve now learnt the people of whom truly support me, whether you’re a member of my family, a friend or if I have met you through the Internet (which I have to say, some of the most amazing people are found) and I thank you for that. Words cannot describe how much a bit of support helps me, both physically and mentally. I’ve also learnt alot of life lessons. I’ve learnt how much life can change within an instant, how fortunate I am to only be in the situation (health wise) and not to take life for granted. One final point: I’d like to thank each member, admin and founder of the social media movement #GetYourBellyOut, an awareness and support group/trend on various social media platforms whom, regardless of the time of day, will have someone to support you in your time of need. Thank you to each person who has helped me during this time and thanks to anyone who actually read all of this post in its entirety.
To finish this post, here’s a quote which I and I’m sure many other IBD sufferers will agree speaks so much truth.
“The world ain’t all sunshine and rainbows. It’s a very mean and nasty place… and I don´t care how tough you are, it will beat you to your knees and keep you there permanently, if you let it. You, me or nobody, is gonna hit as hard as life. But ain’t about how hard you hit… It’s about how hard you can get hit, and keep moving forward… how much you can take, and keep moving forward.” – Rocky Balboa
In support of the persecuted
Before I start off this post, I’d like to offer my utmost condolences to the victims and their family, friends, colleagues of the sickening acts of terrorism the world witnessed this past weekend (13/11/15) in Paris, France and also in Beirut, Lebanon which has (combined) left 170+ killed with hundreds more injured in attacks which truly shocked the world to a standstill. I’d also like to commend the brave men and women in the emergency services, in the aid sector and the public of whom helped victims seeking safe refuge and help from these attacks; the “unsung and forgotten” heroes in these atrocities.
With that being said, the following was originally a Facebook status I posted last night (November 16, 2015) but decided to also post as a blog to make the post public and to let my views “get out there” and reach a larger audience.
Social media right now has become a despicable, hate-mongered and just all out racist platform to be on right now. So I’d like to react accordingly:
I, personally, would like to apologize for the harsh reality that society is only too quick to judge and paint all with the same brush when reacting to this weekends tragic events. I, and others, know that ISIS is NOT what Islam is about and that their atrocities are acts of which you do not agree with. Their acts of which they proclaim to be “holy acts of war in the name of Islam” is just a guise to justify what they are doing when, in reality, their actions are unforgivable, barbaric, cold blooded and cowardly acts of terrorism. I hope that each and every person who follows Islam carries on following their religion, walk the streets with your head held high and to not be ashamed of the religion of which you choose to practice due to the words of the narrow-minded and the belligerent. You should never, ever, allow the words and posts on social media of the hate-filled question who you are as a person and your value to society.
“Whoever kills a person [unjustly]…it is as though he has killed all mankind. And whoever saves a life, it is as though he had saved all mankind.” – Quran 5:32
United as one, divided by zero.
Dear the newspapers and media outlets of the internet;
Before I start off this blog post, I’d like to clarify that I am in no way attacking on a personal level the stories of people’s lives and battles with IBD whether it be Crohn’s disease and/or Ulcerative Colitis, I’m simply disagreeing with how many newspapers, magazines and internet articles are portraying IBD as a whole. Whilst I commend their keenness to help raise awareness of IBD and also ileostomy/colostomy bags and stomas; I can’t help but feel that, for a person who may not suffer from IBD, it may confuse the message that they are also trying to create for IBD.
I’ll explain. I’m sure everyone has read or heard of Sam Cleasby’s story and the viral letter she wrote an open letter on her blog to express her dismay on the way this lady had treated her when she had used a disabled toilet. The blog itself was a beautiful piece of writing, I mean I seriously can’t give enough credit to how well written it was. But then the media got involved… See if you’d have read the blog (http://sobadass.me/2015/02/17/to-the-woman-who-tutted-at-me-using-the-disabled-toilets/), you’d have read the following: “The fact is that I have no bowel. I have a pouch formed from my small intestine which can’t handle volume and so I have to go to the toilet and poo several times a day. My lack of large intestine means that my stool is totally liquid as I have no means of absorbing the fluids in food and so it’s really hard to hold it when I need to go.”. However when printed on various news articles on the web and I’m sure in papers, Sam was pictured with an Ileostomy bag, which, whilst it had some meaning to the article, wasn’t the necessary catalyst to the blog post that made it go viral. Again; my gripe isn’t with anyone in general, it’s with how IBD is being portrayed. To a large audience, some who may have not even heard of IBD up until the media’s reporting, they may perceive that the majority of sufferers have stoma’s which really isn’t the case with 1 in 4 Ulcerative Colitis sufferers requiring surgery at some point in their life and 7 in 10 Crohn’s sufferers needing surgery at some point in their life (Figures from crohnsandcolitis.org.uk) and even then surgeries can be varied from stoma’s to resections.
What I’m getting at is that, whilst it’s starting to clear the taboo on procedures which require stoma bags, not all sufferers will need that sort of surgery and some can lead live surgery free. Again I would like to stress, this isn’t an attack on people and their battles with an illness that I know all too well is horrible and debilitating, but rather my thoughts on how the media is portraying IBD.
Until next time,
Martin
That “Normal life” feeling
Have you ever felt life is just at a standstill and the only way you can move is just by going backwards and not forwards? Have you ever felt that you just want a piece of that normal life that seems to be apparent in everyday life? It seems that, even when you shut yourself away from the outside, the internet is always there to be a constant reminder of how others are living their lives. I see it all the time. People the same age as me going about their lives with careers, going to university for degrees relationships (even getting engaged!) and having an active social life and I just sit here comparing my own life to others and feeling nothing but envy. I like to think of myself as not being a jealous person because I genuinely feel happy for these people but I can’t help myself but think about wanting to have a life like theirs. I know that it could be seen as being selfish that I’m just drawing comparisons on what I lack in my life and not looking at the positives I do have in life and I do know how lucky I am at what I do have and I do feel grateful but can anyone honestly say that in one point of their life they haven’t wanted an aspect of someone else’s life? I can safely answer for the majority of people; they would have been in the same predicament at some point in their life. If I’m honest, all I want is to have a normal life.
Until next time,
Martin
A letter to my Ileostomy Bag…
Amazing post! Will be contributing to this blog some time soon! 😀
Dear Ileostomy Bag,
Although you were scary, you made me sore and were completely unexpected; I can’t thank you enough for saving my life. In just a month you have managed to alter my mind set in a number of ways. You have turned me into this positive, dedicated person that I actually respect. I must admit still look in the mirror from time to time and feel a little irritated when I look at you, but it’s not because of you; more for the fact that you’re covering up most of what I now love, most of what I used to hate; the stomach I used to squeeze and cry and insult – the stomach I wish I appreciated before I was forced to. Although you weren’t my first choice, I mean I wasn’t really given a choice – you took my pain away and I finally feel free…
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What is happiness to you?
Happiness. What is the meaning of this one spectrum of emotions that everyone desires and wants in life? I’m not talking about what the word is defined as in the dictionary but rather what it means in a literal sense to an individual? Is it complementing someone for the way they’ve styled yourself today or asking whether someone is OK when they are feeling down? Is it holding the door for someone or offering your seat on the bus for someone who is elderly, disabled or pregnant? Is it giving some change into a charity box or giving a little tip to the minimum wage retail worker who just served you during the Christmas madness? See what’s to say that just helping someone, who may or may not be in a lower place in life than you, can’t make you feel happy and at the same time feel good that you may have made someone’s day through something that’s so menial despite maybe it not being one of our best days? Do we have to live in a way that we should only look out for number one and that as long as we, in ourselves, feel happiness then that is fine and we needn’t worry about others? I mean, sure, there are some things that can bring happiness to oneself like buying that one thing you’ve seen in the window of your favourite shop but what’s to say happiness needs a monetary value in a world where it seems everything we do has some sort of money cost when happiness can be given by such little things without money really needed to be involved?
So the next time you see someone down, ask them if they’re alright and offer an ear to listen to their troubles even if they don’t want to speak about what’s going on. When you see someone collecting money for charity in the town centre, pop that little bit of pocket change you may have spare in there and say well done for what they’re doing. Sometimes it’s the smallest things that can make a person’s day.
Dear Ulcerative Colitis
This. This so much.
Dear Ulcerative Colitis,
Well, what a journey we have been on! Eleven years ago, you crept into my life with bleeding, diarrhoea and pain. You were not a very welcome guest and so I ignored you. You sat there in my guts getting angrier and angrier, your furious rage spurred you to make me so anaemic that I collapsed. As I was taken into hospital in an ambulance with blue lights flashing, you were giggling to yourself, knowing that soon I would know your name and I would never be able to forget it.
We were introduced at the beginning of 2004, I knew nothing about you. I googled you like a new girlfriend, trying to find out a little more. The words blurred on the screen as tears filled my eyes when I read about the things you had done to others and what you could do to me…
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whenfategivesyoualemon 