This blog is nominated in the ‘Best Kept Secret’ category in the 2016 WEGO Health Health Activist Awards. You can vote by going to this page and clicking ‘Endorse’
This blog is nominated in the ‘Best Kept Secret’ category in the 2016 WEGO Health Health Activist Awards. You can vote by going to this page and clicking ‘Endorse’
I can foresee with the current political turmoil that I will be posting more about politics and protest. My post on the EU Referendum was the most read post on the blog ever, and it has only been up a few days. However, these thoughts are relevent to all my writing, be it about IBD or my poetry.
I am a white, straight, cisgender male. Although I consider myself to have a disability, it is an invisible disability arising from an invisible illness (Ulcerative Colitis). I am still able to work full-time (usually).
My childhood was very comfortable, and featured foreign holidays, fresh vegetables and early access to the internet in a warm and loving home.
It is therefore, as someone who has not experienced discrimination, easy to assume things that would be easy for me to do are easy for others. That speaking up is not a problem, and that I will be heard. Even that there are things I need to speak up about from my position of privilege.
I strive to be an ally. And I will try to keep my privilege in check – but please call me out if you need to.
In the words of Jo Cox MP –
I’ve been puting this together for. Few days, but events are movig so fast I felt I needed to publish it and come back to it in furhter posts, not quite as developed as I wanted. So a few days ago I indicated on Facebook that I would be voting to leave the EU, based on my understanding of the EU structure and process and the direction it has moved in. Specifically, that austerity and privatisation is the policy of the EU.
I had a few conversations with people about it, both prior to and following my post. I had already discussed it with my wife, who was voting remain. I did no small amount of soul searching, because having started the campaign as leave, the actual debate, coverage, lies and lack of coverage of a clear left message for leave made me question my reasoning. I had to dig a bit, and reconnected with Trade Unionists Against the EU. Some friends were voting leave for the same reason, others recognised the reasons but were fearful of the timing, or letting the current government off the leash in regards to workers rights. Others were firmly for remain, for reasons including the funding of university research or arts and science. Others just had a sense of wishing to stay a part of the EU although couldn’t clearly articulate why.
For me however one thing was certain – this was going to be a once in a life time opportunity. One of my issues with the EU was the treatment of the Irish people over the Lisbon treaty – a member state said no, so changes were made so they said yes (a protocol arrangement on abortion, tax and military neutrality) – but because these issues had been the focus of the no campaign first time around, the larger points were ignored (much as we saw in the run up to the UK membership referendum – the economy and immigration dominated). So on the basis that this was the one time to reject the capitalist, forced austerity, TTIP embracing (and therefore NHS privatising) organisation.
Many people will not have heard this arguement. The media in the UK gave such prominance to the immigration and economy, to Farage, Gove and Johnson and there lies, that we didn’t talk about this. I believe it is possible to reject the EU but love Europe. To reject racism and welcome refugees. And we never debated or discussed the issues that under lie people’s concerns about immigration.
I met a man in the dentists a few years ago. It was the run up to Christmas. His son had just been laid off by aprinting firm and replaced by a Polish worker. The man believed he was being paid less than his son. He was angry at the Polish man for taking his son’s job. I didn’t get into a discussion, but inside I was screaming it is not the Polish man, but the firms boss who has done your son out of a job so he can retain his Profits.
As a leave voter I have been, indirectly, labelled as ignorant, racist and a ‘stupid f***ing cockle eyed bollockhead’ – so I see the debate standard is yet to rise. Many people have assumed all leave voters are UKIP supporting racists, and this is not the case. Some are, but analysis afterwards shows a broad spectrum of people voting for both sides.
One cautionary note was that votin g leave would legitamise the far right. This argument seems to stem from the fact that the dominent right wing press gave Farage, the legitimate face of facisim, so much air time/ column inches. The so called ‘Lexit’ message was lost – I had to search it out – and the TV debates focused on the economy and immigration (and in one I saw mobile phone tariffs). So my friends of all political persuasions who voted remain and are shocked and horrified never heard the socialist and internationalist arguement for leave. That is not to say they would have agreed, but it would have expanded the debate.
Farage/ Le Pen et al only have legitimacy if we allow them it. The result is an indication that we need people to reengage with politics, make it ours not there’s. And we need to win the argument through debate, not just by protest. And for me, unions have a huge job to do in that political education, so we must build the union movement. We need to campaign against racism. We need to join and become involved in political parties to shape what happens next. We are seeing a definate leadership contest in the Conservative part, possible challenge to Jeremy Corbyn and a possible early general election.
The referendum is not binding, article 50 must be triggered. David Cameron wants to leave that to his successor, the Lib Dems say they would stand ona remain/ rejoin platform. Much is happenIng, so it is time to get involved.
So lets be clear. I voted to leave because it was heralded as the one time to make the decision. I reject racism and the lies of the main leave campaign. I wanted to leave the EU. That is all. I accept there is now lots of work to do to unpick it, because the campaign was arrogant and ill-thought through. Time to step up.
Just before I went back to work, I signed up for the Duke of Edinburgh Award Diamond Challenge. This year marks 60 years of the Duke of Edinburgh Award, and as former participant and gold award holder, as well as a former leader and manager for the award scheme it was something I wanted to get involved in.
I have some fond memories of my D of E experiences, from volunteering in a residential home for my bronze award, to learning to play guitar and improving my public speaking. The most high-profile element of the award is the expedition, and from trekking around Rutland water to the wild country of Derbyshire & Mid Wales and camping in the wrong place having come off the peaks in the fog. I am still in contact with some of the people I took part int he award in, and I believe in it as a way of developing as a person for young people. It’s not perfect, and issues around accessibility need to be improved – but then nothing is.
So what is the Diamond Challenge? Well, it can be any personal challenge. I have a former colleague who is doing a trek in the Scottish Highlands, someone else is giving stand up comedy a go. Money raised from these challenges will go towards making the award more accessible to young people across the UK.
In my current uncreative and unimaginative state from the pain killers I’m on, I am appealing for ideas for a challenge. It needs to be completed by 31st December, and realisitically as I am not allowed to start any real exercise until the end of July, a demanding physical challenge may be ambitious – I could probably manage a day walking if that tickles your fancy!
So my plan is to appeal for ideas from now – you can leave a message on th eblog, tweet me, comment on Facebook or send me a message in Snapchat or Instagram – @doobarz for the social media – then I’ll have a poll of the ideas in July and announce my chosen challenge around my birthday!
There are now many, many things we can do online. I order my ostomy supplies online. I make my GP appointments and request repeat prescriptions online. Our gas and electricity is supplied by a company that is online only. I interact with other IBD suffers (many of whom I have never met) via Facebook and the ia forum.
I am able to read the opinions and stories of other IBD sufferers via their blogs, or see there tweets and Instagram posts. And all of that is great.
If we stick with the UK for a moment, there are however a number of groups of people who can’t access the online world in the same way as me. Those living in rural areas for example who don’t have sufficient speed. And some older people (and I’m really not sure here what would count as older) are less confident or competent online. It is now not unheard of for websites to crash – Adele tickets anyone? – due to high demand, leaving the people on the phone very little chance of getting through.
And recently, it is not just websites that replace shops, but online clubs – a subscription service that makes a regular delivery – now seem to be on the rise. I myself have two current subscriptions – the following links will take you to the sites via my ‘recommend a friend’ links. The first is with Cornerstone for shaving supplies – I’ve been using them since November and am very pleased with the shave – and the second is with Flavourly for a monthly box of craft beer. I had a gift of a spicebox subscription for my birthday from the Spicery.
I also recently tried out Musclefood.com after a friend recommended it – they deliver chilled meats and other high protein products. Because I am a bit of a social media floozy and I started liking these companies on various streams, I then started getting recommendations for other, similar sites. I have seen at least one other shaving club, several beer clubs and another protein/ meat website.
This is on top of gin, cheese, chocolate and charcuterie clubs. As a business model, I guess it makes sense – cheap premises, easy access (via the net) for your customers. And so far I have not been disappointed. IT does mean that our high street is having to change – if you can order everything online, why would you leave your house? It is a little scary, exciting and – when my mobility was limited post operatively – very useful.
Is there anything you wouldn’t buy online?
Hello #stomastory readers. Sorry for the delay in the latest post – I was away last week visiting family and am now deep into preparations for Christmas. I’m hoping to get a few pots done over the Christmas period so I’m caught up by the time I have the surgery in Janaury, and thanks for all the support so far.
On 18th November it is European Antibiotic Awareness Day (link to UK resources). There has been a lot of coverage in the media in the last 12 months about concerns that we are going to run out of antibiotics – including from the World Health Organisation. There are a number of reasons for this, including over prescribing by doctors, not completing the course by patients, as well as increased use in farming. The threat is that we may suddenly find ourselves unable to treat what were previously very treatable infections as they develop resistance to the antibiotics we have. Antibiotics are very expensive to research and develop, and don’t make pharmaceutical companies as much money as other drugs, so they are not that interested in creating more.
However, this is not a new thing. For at least 10 years we have heard about the rise of hospital superbugs, such as MRSA (or the MRSA virus in some parts of the American press – so very wrong on so many levels). And I know all about that, because when I was in hospital in 2005, I picked up MRSA. It was detected after a second emergency operation. I was stuck in a hospital bed, with staples right down my middle when a military officer appeared and drew the curtains around my bed. They told me they were from the infection control team, and that I had MRSA. Now, at that time I was less aware than I am now, and I asked them (and please bear in mind I was not in a great place at this point, being about a month into my hospital stay) if I was going to die. That is what I knew about people in hospital with MRSA – they died.
Thankfully, the Daily Mail is usually wrong and I was assured that I was not going to die, but would be given treatment. I was moved into a side room and barrier nursed for the rest of my stay. Part of the treatment was a very potent antibiotic called vancomycin, which is given through a drip. It is nasty stuff, and after every three doses I had to have a new cannula fitted because it felt like it was burning my veins. I had to wash in a special antibacterial wash, and apply a nasal gel. I eventually managed to get two clear swabs a week apart, and a nice sticker on my hospital file. I’ve had to be retreated several times too.
Actually, 30% of the population carry MRSA. It’s only a problem if you have an open wound but can be easily spread. It is why visitors (and staff and patients) in hospital are asked to use hand gel – and do ask them too if you are a patient.
So how do super bugs become super? Ever had a course of antibiotics and not finished the course because you felt better after a few days? Or pestered your GP for antibiotics for something that was probably a viral infection? Do you love antibacterial everything? Well, collectively all of us who have are in part responsible. Not to mention increased antibiotic use in the food chain.
Remember evolution? When we only partially complete a course of antibiotics the bugs that were not killed get a little bit stronger. And eventually adapt to no longer be susceptible to the antibiotic. So a new one is required. And that brings us back to a lack of new antibiotics. There have already been cases of vMRSA. The zombie apocalypse could be infections we can no longer treat. You can however make a difference. Pledge to be an antibiotic guardian. Visit http://www.antibioticguardian.com and spread the word. Believe me, you don’t want to have to deal with MRSA.
So I’ve been thinking about my fundraising plan. Not that there was much a plan, I just decided to give it ago. And so far I have raised £40, so thank you to the people who have already donated. The surgeons haven’t even sliced me open yet!
Anyway, I have created a category for these fundraising blog posts – Stoma Story – so if that is what you are interested in, then click on that to find them. My other blog posts are quite interesting too though.
I’m planning to try and write as much background as I can before the surgery in January, baby permitting. I think I need a post about:
Symptoms & diagnosis
Life with a stoma
Pouch surgery & complications
Drugs, drugs and more drugs
The beginning of the end
Abscesses & fistula
Life with a failing pouch
And I think then we’ll be good to go with the surgery in January, and you’ll be able to see how things have developed. I’m also going to do a post along the way about how the two charities I’m raising money for have helped me, and how if you are living with IBD in the UK, they could help you too.
Thanks for reading, and if you are able to donate, you can do so at http://uk.virginmoneygiving.com/RichardHarris19
In May 2004 I was diagnosed with Ulcerative Colitis. I didn’t really know then what it was, and in August of that year I was admitted to hospital when a severe attack took hold. After several weeks and lots of drugs, my colon was removed, leaving me with a stoma, and using an ileostomy bag to collect my poo.
The next year I had an internal pouch formed, and had several months of further problems, and eventually further surgery. Things were good for a while, but in recent years I have had problems with abscesses, fistulas and infection, and some other related unpleasant side effects. Tonight I walked around our close with my son trick or treating, and when I got back I was in pain and bleeding.
So the surgeons have been consulted, and the pouch is going to go – in January. Well, that will be the first step.
I’m going to be blogging about this surgery and recovery, and filling in what has happened to reach this point. Inspired in part by the #getyourbellyout campaign, I’m going to be fundraising as I do this awareness raising for two charities that have given me support over the years – The Ileostomy & Internal Pouch Support Group (the ia) and Crohn’s & Colitis UK.
If you’d like to make a donation, you can visit my fundraising page at http://uk.virginmoneygiving.com/RichardHarris19
If you have any questions about what is going on, then please leave me a comment or get in touch via Twitter.
In my recent-ish post ‘Musings on Free Time‘ I considered getting more involved in Inflammatory Bowel Disease (IBD) and mentioned the #getyourbellyout campaign – you can check out that hashtag on Twitter, Instagram and there is also a Facebook group. I even joined in!
In the middle of June there was then a flurry of publicity around IBD and Crohn’s Disease. Firstly, Crohn’s Colitis UK launched there new Fatigue Screening tool, in reporting this there was some misrepresentation in the media – I talked about it all here. Then the story of Bethany Townsend went viral and received lots of media coverage – The Daily Mail & The Daily Mirror to name just two.
This has produced some interesting reaction around the IBD and ileostomy/ internal pouch community. First, a bit of explanation…
Crohn’s Colitis UK is a charity supporting people with Crohn’s disease & ulcerative colitis (I have Crohn’s).
The ia – The Ileostomy & Internal Pouch support group is a charity that supports people (and their families) with an ileostomy – that is when the small bowel is brought to the surface of the skin as a stoma and has a bag placed over it to collect waste, often after the removal of the colon, and internal pouches – where a reservoir is created from small bowel following the removal of the colon (large bowel).
The #getyourbellyout campaign raises money for Crohn’s Colitis UK, and along with Bethany’s story and subsequent publicity there was some negativity that the ia had not tried to get involved and gain some publicity/ raise awareness of themselves as all of this had been going on – as well as being critical of perceived error in reporting – referring to a colostomy rather than an ileostomy.
According to accounts on the forum, the ia is happy where it is and has in the past been resistant to raising it’s profile further. Crohn’s Colitis UK, who have used Bethany’s story, have celebrity ambassadors – Sam Faiers from the Only Way is Essex and Carrie Grant for example. However, one tweeter has been keen to point out that Crohn’s Colitis UK have over £1m in the bank, and last year spent more on staffing and on costs than on research.
Now I have not been really involved with either charity – although I am a member of both – and I’m not overly concerned by either aspect – although interested to see the dialogue develop between this tweeter and the CEO of Crohn’s Colitis UK. And I think that the ia is a very specialist charity – relatively few people are affected or interested. What is important, in my view, is that people who are affected are informed about the existence of these charities either at the point of diagnosis or surgery (or when surgery is being considered). That obviously requires a level of resource to produce information, as well as volunteers to support local group infrastructure to support members and potential members. It’s never going to have the reach of the larger health charities, but both do good work – and raising awareness of both IBD and ileostomies and internal pouches is important – to me at least.
My local CCUK group has just restarted, and I look forward to attending meetings with both.