It’s National Breastfeeding Week in Ireland. This means it’s time to celebrate all that is good and great about supporting women feeding their babies. It’s not something I feel particularly well-experienced in to write much about. My experience revolved around 9 weeks of supplementing, of panic and of not enough support – not exactly a ringing endorsement. There’s definitely a lot I’ve learned since. There’s lots that will be put into practice if there’s another baby to make it a better experience for everyone. However, this year the slogan for the week is “Every Breastfeed Makes A Difference”. Here is a stash of breastfeeding resources which I have found to be EXCELLENT. In celebration of the boob-tastic women who fuel their kiddies themselves, I hope you find this helpful.
The Irish Health System is a flawed system, there is no empirical evidence at all to show us otherwise. We have seen a medley of errors causing pain and suffering in numerous ways over the past few years. However, sometimes, we do SOMETHING right, and one of those things is the Drug Payment Scheme. Is it perfect? Not at all, but it’s definitely something that everyone should sign up for because it may save you from financial woe in the future.
Here’s a bit of a look into what’s involved, who is entitled to it and how to get yourself sorted out with the Drug Payment Scheme. Hopefully it is something you will never need to use (the majority of users don’t hit the cap each month) but if you’ve got a house of kids, a chronically ill family member or simply want to prepare for the worst, then make sure to get this card into your purse.
September is International Pain Awareness Month. Now, I know that sounds like a bit of an unnecessary one. We all know pain is real, we know it exists, why does it need a month? Well, as someone living with chronic pain, there’s a lot that people DON’T KNOW, or assume instead of actually finding out. So, the hope of this International Pain Awareness Month is to inform, to educate and to hopefully bring a greater understanding to the larger population lucky enough to not directly experience chronic pain as to what we’re going through.
On 20 August 2018, the World Health Organisation released a press release which stated that “Over 41,000 children and adults in the WHO European Region have been infected with measles in the first 6 months of 2018. The total number for this period far exceeds the 12-month totals reported for every other year this decade.” The WHO European Region is made up of 53 countries. 71% of these cases came from 3 countries: Romania, Italy and Ukraine. However, over the past few years, the amount of cases which have been highlighted in Ireland have been increasing and this is a worrying trend. For me as a parent, a chronic worrier and someone who lives with an invisible autoimmune issue, these figures absolutely terrify me.
Measles is an illness which by all accounts SHOULD be extinct. We’ve been vaccinating against it on a worldwide scale since 1971. Doctors have been giving two doses as standard since the late 1980s. By the end of 2017, 85% of children had received one dose of measles vaccine by their second birthday, and 167 countries had included a second dose as part of routine immunisation and 67% of children received two doses of measles vaccine according to national immunisation schedules. So why are we still in a position where not only are children catching this disease but dying from it? It looks like the answer is lying in reduced vaccination rates and in parents choosing to not vaccinate their children.
I do not say this in a sanctimonious way, I do not wish to tell ANYONE that my way of parenting is the best way of parenting, by any stretch of the imagination. However, when it comes to vaccinations against diseases which put not just your child in danger, then it becomes past a conversation about parenting styles and more about protecting the community as well as protecting your own child. I believe that if a child is medically considered fit to be vaccinated (ie not allergic to ingredients or against medical advice), then that child should be vaccinated against these diseases which have potentially life changing and threatening effects.
What Are Measles?
Measles (AKA rubeola) is a highly infectious viral illness. The measles virus is contained in the millions of tiny droplets that come out of the nose and mouth when an infected person coughs or sneezes. This means that you can catch measles by breathing in these droplets or, if the droplets have settled on a surface, by touching the surface and then placing your hands near your nose or mouth.
Measles symptoms appear around 10-14 days after exposure to the virus. They typically include:
Inflamed eyes (conjunctivitis)
Tiny white spots with bluish-white centers on a red background found inside the mouth on the inner lining of the cheek. This is also called Koplik’s spots
A skin rash made up of large, flat blotches that often flow into one another
Less common complications of measles are:
pneumonia (lung infection), signs of which are fast, difficult breathing, chest pain and deteriorating condition,
hepatitis (liver infection),
encephalitis (inflammation of the brain), which can be fatal, so watch for drowsiness, headache and vomiting,
low platelet count, known medically as thrombocytopenia, which affects the blood’s ability to clot,
bronchitis and croup (infection of the airways), characterised by a hacking or barking cough, and
squint, if the virus affects the nerves and muscles of the eye.
These complications are more common in children under the age of five or in adults over the age of twenty.
The infection occurs in sequential stages over a period of two to three weeks.
Infection and incubation. For the first 10-14 days after you’re infected, the measles virus incubates. You have no signs or symptoms of measles during this time.
Nonspecific signs and symptoms. Measles typically begins with a mild to moderate fever, often accompanied by a persistent cough, runny nose, inflamed eyes (conjunctivitis) and sore throat. This relatively mild illness may last two or three days.
Acute illness and rash. The rash consists of small red spots, some of which are slightly raised. Spots and bumps in tight clusters give the skin a splotchy red appearance. The face breaks out first. Over the next few days, the rash spreads down the arms and trunk, then over the thighs, lower legs and feet. At the same time, the fever rises sharply, often as high as 40 to 41 degrees celcius. The measles rash gradually recedes, fading first from the face and last from the thighs and feet.
Communicable period. A person with measles can spread the virus to others for about 8 days, starting 4 days before the rash appears and ending when the rash has been present for four days.
The measles virus is exceptionally contagious and spreads easily among susceptible individuals. About 90 percent of susceptible people who are exposed to someone with the virus will be infected. To prevent outbreaks, at least 95% immunisation coverage with 2 doses of measles-containing vaccine is needed every year in every community, as well as efforts to reach children, adolescents and adults who missed routine vaccination in the past.
What is The MMR Vaccine?
MMR is a safe and effective combined vaccine that protects against 3 separate illnesses – measles, mumps and rubella (German measles) – in a single injection. The full course of MMR vaccination requires 2 doses. No country in the world recommends MMR vaccine to be given as three separate injections.
MMR vaccine was introduced in 1988. In the Irish system, the MMR is given at 12 months of age by a GP, followed by a second dose of the vaccine at age 4-5 years, either through the school system or by a local GP.
How Does the MMR Work?
The vaccine triggers the immune system to produce antibodies against measles, mumps and rubella, as though your body had been infected with them. Antibodies are proteins that are produced by the body to neutralise or destroy disease-carrying organisms and toxins.
This also teaches your immune system how to produce the appropriate antibodies quickly.
This video gives a bit of a rundown on how vaccines in general work and may be much easier than a block of text to understand!
What About Adverse Reactions?
As with any medication or vaccinations, adverse reactions are a possibility with the MMR vaccine.
After getting the vaccine, there may be discomfort, redness or swelling at the injection site. Children may be irritable and have a fever. If this happens, you can give them paracetamol or ibuprofen as well as plenty of fluids. Keep an eye on their temperature. It might also be a bit uncomfortable if clothes are rubbing against the injection site.
After 6-10 days 1 in 20 children may get “mini measles” with a rash and fever. About 1 child in 100 may get “mini-mumps” with swelling in the jaw area in the third week after vaccination. These are not contagious. Children usually recover from these side effects in 1-2 days.
In rare cases, a child may get a small rash of bruise-like spots about 2 weeks after the injection. This side effect, linked to the rubella vaccine, is known as idiopathic thrombocytopenic purpura (ITP). It has been estimated that ITP develops in less than one in every 22,000 doses of the MMR vaccine. There is a greater risk of developing the condition from the diseases that the vaccine prevents. ITP usually gets better on its own, but, as with any rash, seek advice from your doctor ASAP.
In very rare cases, children can have severe allergic reactions straight after an immunisation. This happens in about one in 100,000 immunisations for MMR. Medical staff who give immunisations are trained to deal with allergic reactions to vaccines.
The table below shows the most common side effects from the vaccine, and the levels of same effects seen caused by the disease itself. (Health Protection Surveillance Centre)
People who have been recently immunised cannot infect others with the viruses contained in the MMR vaccine.
The Andrew Wakefield Scandal And Links To Autism
Andrew Wakefield published a study in The Lancet in 1998 linking the MMR vaccine to autism. His initial study appeared to show a link between the MMR vaccine and autism and bowel disease. However, his research was not carried out correctly and has since been discredited. It used a sample size of just 12 individuals. Later it was discovered to be funded by lawyers who had been engaged by parents in lawsuits against vaccine-producing companies. This study was far from unbiased or complete.
Isn’t Three Viruses Too Much For Their Little Bodies To Handle? Why Not Separate Them?
Single vaccines in place of MMR put children and their families at increased and unnecessary risk. Generally, it is considered that the mother’s immunity will cover her child for only up to 12 months against measles, mumps and rubella, and some evidence is showing that the timescale for measles is even less than that. In spreading the vaccines, it would increase the risk of a child contracting one of the diseases while waiting for a time period between vaccines. It would also increase the number of vaccines the child needs to six instead of the current two. The combined vaccine is safer as it reduces the risk of the children being infected with the diseases whilst waiting for full immunisation cover.
What About Herd Immunity? Won’t That Keep Kids Safe?
Herd immunity (otherwise known as Community Immunity) keeps a certain level of the community safe. However, to do this, it requires for the vast majority of the community to be vaccinated. Germs can travel quickly through a community and make a lot of people sick, which can lead to an outbreak. When enough people are vaccinated against a certain disease, the germs can’t travel as easily from person to person. This means that the entire community is less likely to get the disease.
That means even people who can’t get vaccinated will have some protection from getting sick. And if a person does get sick, there’s less chance of an outbreak because it’s harder for the disease to spread. Eventually, the disease becomes rare — and sometimes, it’s wiped out altogether.
Herd/Community immunity protects everyone. But it’s especially important because some people can’t get vaccinated for certain diseases — such as people with some serious allergies and those with weakened or failing immune systems (like people who have cancer, HIV/AIDS, type 1 diabetes, or other health conditions).
Community immunity is also important for the very small group of people who don’t have a strong immune response from vaccines.
What About Reports That Say The Drug Wasn’t Tested Enough Before Giving It To Kids?
The normal procedure for licensing was used for MMR. The vaccine was thoroughly tested before being introduced into the Irish routine immunisation programme in 1988.
How Widespread is Vaccination against Measles Currently, And What Is The Scale Of The Current Problem?
While immunisation coverage with 2 doses of measles-containing vaccine increased from 88% of eligible children in the WHO European Region in 2016 to 90% in 2017, large disparities at the local level persist: some communities report over 95% coverage, and others below 70%.
The figures for Irish vaccination at levels can be seen here. In looking at the figures which are broken down by quarter, we can see a national decline from 93% to 92% over the last 6 years, remaining steady for the last 3 years at 92%. In the breakdown by area, Wicklow has the worst average rate of vaccination for the MMR by the age of 24 months, with just 85% of eligible children vaccinated with the MMR in the last two quarters, part of a steadily decreasing trend in the area. On the other hand, areas in the midlands and the west of Ireland seem to be hitting the targets consistently for vaccination. Those, however, are just the current vaccination figures and do not take into account young adults and adolescents who have not been vaccinated in the years since the Wakefield report which caused mass hysteria over reported dangers of the vaccine. The lack of vaccination around the time of that report’s publication and the years that followed has led to an increased number of secondary-school and college-aged people contracting communicable diseases like measles and mumps which had not been seen before at that age in recent years.
In Ireland in the period between July 2017 and June 2018, Ireland saw a total of 95 cases of measles, 20 cases per million of population. During that same time period the year before, July 2016 to June 2017, this figure was just 15, making up 3.2 cases per million of population. In a single year, it has multiplied 533.333%.
The United Kingdom, our closest neighbour, had 947 cases in the July 2017-June 2018 period, making up 14.46 per million of population. In the year before that, it had 413 cases in total, which was 6.3 per million population, in effect increasing by 129% in a 12 month period.
The “target” for disease control as considered by the WHO is less than 1 per million of population. Only 21 out of 53 countries (51 when you discount those who did not report in 2017/18 and 50 when you discount those who did not report in 2016/17) meet that target in 16/17, and only 8 countries meeting it in 17/18.
So, is mandatory vaccination the solution? I don’t believe it is a politically viable option, given the current way that the Irish government functions. There are already policies in place across the Health Service Executive to make vaccinations as easily accessible as possible to patients. Parents are given reminders by text message in some cases, and at checkups with doctors. We do not have a system that allows those doctors to make that choice for the parents, ultimately the choice is up to them. I just hope that in making that choice, they are not making the choice for another child or vulnerable person’s health for them.
Vaccinate your children – give them and the community around them the best chance of good health and avoiding a life-changing or ending disease. Measles is not a childhood illness children should have to get in 2018, and by vaccinating them, it gives them the best possible chance of avoiding its dangers.
For the last six weeks, I’ve been taking a drug called Humira which was meant to help get rid of my chronic pain issues. The general gist of how it was to do that was that it would tell my immune system to cop onto itself, stop fighting itself and calm down the inflammation which my doctors think is causing all the pain to kick off. I was so hopeful that it would work. Living in pain all day every day has been my life for the last five years and it’s bloody hard, so I have tried MANY things to get rid of it. But sadly, this time was not meant to be, Humira didn’t work for me. Here is my experience with the drug and what we are planning to try next in the hopes of getting me pain-free (or at least able to function).
As someone who lives with chronic pain and chronic illness, I’ve got a fair bit of downtime. I’m currently out of work as managing full time employment when your pelvis screams at you for sitting down isn’t exactly the easiest proposition. However, the child is in Montessori all day, so I have had to find something to keep my mind busy or I’ll go completely demented (there is only so much The Good Wife re-runs a woman can manage). And so, my latest creation is this: The Chronic Pain/Chronic Illness Alphabet – an A-Z guide to Chronic Life. Hopefully it will ring a bell with others who are living with chronic conditions, and bring some more understanding to those lucky enough to not interact with it.
This post has taken me a long time to write. I’ve previously written about my struggles with mental health, and with my journey through life with chronic pain, and in my head this feels like it should be an extension of it. This post was started in April and has been living in my drafts ever since – down to things changing, trying to do more research, trying to wait until I had an answer. And so, here I am, in mid July, feeling like we’ve not really moved on that much, living with life with no diagnosis to show for it. (more…)
In less than two weeks, we will know the result of the referendum which proposes to repeal the 8th Amendment in the Irish constitution. The end is nigh, people, it is DECISION time. For those left undecided, it’s time to get making up their minds. A hashtag caught my eye in the last few days, #whoneedsyouryes. It was sparked by a campaign from the National Women’s Council of Ireland under the same name, and contains powerful stories and thought provoking insights from people thinking about this referendum. If you haven’t already, I compel you to read through at least some of the tweets. For me, I wrote what I could fit into the character limit as one of the categories of people I believe my yes will be for on the 25th. But afterwards, so many more occurred to me, and I felt the need to share them. This is who my yes is for.
As we come up to the referendum which will decide whether or not the 8th Amendment of Bunreacht na hEireann is repealed, there is a whole lot of information being thrown our way. In 1597, Francis Bacon wrote “Knowledge itself is power”, which has been interpreted as saying information is power. However, in the current climate of fake news and scaremongering, the debate as to whether to allow women to decide for themselves what happens to their bodies or to leave it up to the state rages on. What is clear is that the funding for the campaign is unequal, with the conservative leave-it-as-it-is side being able to fund a far larger poster and leafleting campaign than the grassroots activism seen on the Repeal side. With increased funds comes the increased capacity to reach more people – and so it is necessary for those on the side of change to ensure that the truth does out, that these myths and lies and fake statistics are called out for what they are. (more…)
Over the last few years, I’ve tried my hand at a fair amount of chronic illness interventions. Various exercises. Many, many medications. Physiotherapy. Interventions that included big scary needles which hurt like a mo-fo. CBT. Therapy. And throw a few more medications in there. You name it, I’ve probably tried it in my search to end the cycle of chronic pain and depression. It’s been a journey, to use a word that I’m not a particularly big fan of. I’ve tried everything mentioned to me, in the hopes of waking up and having a day with no pain, or a day without thinking dark things. And as far as the depression has gone, it’s mostly been positive. It’s taken some tinkering around with dosages and doctors and therapy but it’s manageable. Chronic pain is a wholly different beast. In my search to find the cure for my pain, I’ve found some halfway fixes, but also discovered some rather awful side effects.
As a chronic pain patient, I spend my days willing the pain to feck off and find a new hobby. I’ve got discs bulging in my neck, lower back joints that decide when they want to play ball and unexplained pain in various other places. I’ve tried tonnes of therapies, medications, procedures and am still here, battling away and waiting for a day where I’ll wake up and magically be pain-free. I’ve realized that is unlikely to happen. When I said that to a doctor a year ago, when I was discussing my plans for returning to work, I was told it was an awfully negative outlook to have “for someone so young”. They saw my realism as a thing to count as a negative attitude instead of just deciding that it’s something I’ll have to figure out how to live with instead of in spite of. In contrast to that, it seems that the new wave of thought for pain management doctors is “pain acceptance”, where the patient is being told that instead of pursuing medical cures to their pain, that accepting it and finding holistic methods to deal with it and live with it are better options. This is being met with some opposition, in particular in the USA, where there is lots of talk about the growing opioid issue at the moment.
In Ireland, we are in a time of change. While the rest of the world is shouting Me Too, we are shouting “Listen to Me”. In 2018, our government has promised an as-of-yet unscheduled referendum to decide whether or not to repeal the 8th Amendment of the Irish constitution. This amendment gives equal rights to the unborn as it’s mother; meaning that abortion is an illegal activity in our country and disallowing women from invoking their own autonomy over their bodies. The campaign has been raging to get this referendum for many years, and has certainly escalated in the last five years. This isn’t the first time I’ve written about it, and it won’t be the last. This referendum has the possibility to change the lives of women in this country, and allow them rights to gain healthcare they would be entitled to in their own country elsewhere. For that to happen, we need to, in the (paraphrased) words of Mary Robinson on her election to the office of president in 1990, “instead of rocking the cradle rock the system”. There are many facets to this campaign, and one of them is EveryDay Stories.
If you’re active on social media, or have an interest in public health, you may be aware of Orla Tinsley, a Cystic Fibrosis patient who has written extensively about her life with Cystic Fibrosis. Orla is a journalist and activist campaigning for many health issues, including the rights of transgender people to gain gender recognition, as well as gaining essential health care resources for cystic fibrosis patients. This December, a few days before Christmas, Orla underwent surgery for a double lung transplant. Seeing her tweet about it made me well up. I don’t know this woman at all. I know of her, I follow her on Twitter, but we’ve never met nor conversed. But seeing the power of what one person’s actions in life and death, by being an organ donor, can do to affect another affected me more than I thought it could.
Cervical Cancer. It’s one of those big scary C’s that we don’t talk enough about. The words “Mortality rate” and “most common cancer” are bandied about, but as a society, we seem to stick our fingers in our ears and hum. Much has been done on this in recent years, but we’ve a long way to go.
This week, a news story hit that the Royal College of Surgeons in Ireland has begun to use a robot for educating their students on the physical elements of childbirth. The news video included some (debatably creepy looking) footage of the robot in practice. Lucina, Ireland’s only “birthing mannequin”, has been purchased for €75,000 to benefit the surgical education of the future doctors taught in RCSI. The reaction to this news story has been mixed, to say the least. Some are horrified at the idea of a robot being used to teach doctors how to work in a childbirth setting. Others find it a genius idea which will likely improve outcomes for future patients as the educational tool will prove beneficial to the doctors in their training. So, what exactly is the reasoning behind the robot, what is it likely to teach that our current system doesn’t have, and is it all a bit of space age nonsense?
Ahead of the March for Choice next week in Dublin, there was a Repeal Not Replace demonstration in Cork City on Saturday 23rd September. I was asked by the organisers to be one of the speakers at this event. Initially I was hesitant to speak, feeling like my story wasn’t as relevant of that of many of the women who have suffered greatly under the 8th Amendment to our constitution. However, on reflection, I realised that as a woman who has gone through pregnancy in Ireland, I do have my experiences of maternity care under the 8th to speak about. The 8th Amendment is about so much more than abortion and it’s availability in our state, and I hope that I got that across in my speech. Here’s the full text of the speech, I’d love to hear what you think.
I’m a self-proclaimed spoonie. It’s not a club I readily joined, it’s not something I would hope that anyone I love would join. It is however proving to be somewhat of a lifeline, this community that I have found. If you look on social media networks like Twitter and Instagram, the “#spoonie” can be seen all over the place, but it doesn’t really lend itself to an explanation. So what exactly is a spoonie, how do I fit in, and why are we so obsessed with all the spoons?
Last week, I was wandering around Cork City when I came across a sight which turned my stomach. An anti-abortion group, Youth Defence, were protesting outside Brown Thomas on Patrick Street. As well as their usual selection of banners with images of dead foetuses, they also had lots of volunteers handing out leaflets with the same. So far, so unfortunately familiar. There were lots of families around, children are off school and the weather was nice. For the most part, parents were trying to rush their children through the area, ignoring the stands and trying to distract their kids. This was a job made much harder by the volunteers, who were handing the leaflets to the children.
In talking to others about chronic pain and chronic illness, there is one theme in particular that keeps coming up. The idea that being not believed is a huge part of the problem. Having dealt with both mental illness and chronic pain over the last few years, I’m all down with the invisible illness speak. I’m on my way to gaining a medical degree through experience hours alone. It can be lonely, at times, being in this bubble where everything seems alright when it isn’t. Not being believed, or being told that it’s in my head, has been a big part of that.
Late last year, I started seeing a therapist. It was after my return to work (I’ve since been out again), and I wasn’t coping particularly well with my schedule and other pressures. It wasn’t my first foray into therapy; I’d seen counsellors in college on two separate occasions for a number of weeks each time. I was good with the idea that it worked, just not that I truly had time for it.
My therapist this time was a wonderful woman, who spoke in THAT VOICE, the one that says it’s alright to talk and cry and let it all out without judgement. She could bring me to my knees in the first sessions, letting out feelings of guilt, insignificance and anger. She left me with two major discoveries: the work of Brené Brown, and the need for self care.
The news came to the fore yesterday that the new National Maternity Hospital was to be placed under the ownership of the Sisters of Charity. The Sisters of Charity is a religious group who in the past were one of the groups who ran the Magdalene Asylums. Under their watch, terrible abuses were carried out on mothers and children alike. In State redress schemes since the news broke of what went on inside these Mother and Baby Homes, the Sisters of Charity have neglected to pay their fair share. In 2013 the Sisters of Charity, along with the three other religious congregations which managed Magdalene laundries, announced that they would not be making any contribution to the State redress scheme for women who had been in the laundries. The Sisters of Charity were involved in five industrial schools – including St Joseph’s and St Patrick’s, Kilkenny and Madonna House in Dublin. They were party to a €128m redress scheme with the State in 2002 for child abuse which took place. According to a December 2016 report from the Comptroller and Auditor General, the Sisters of Charity offered €5m towards the redress scheme – but have only paid €2m. They are currently in debt to the state, and the victims as a result, to the tune of 3 million. So, gifting them a hospital sounds par for the course, right? Only in Ireland.
A picture tells 1000 words, right? With some topics that can be hard to discuss properly, pictures and memes can do a lot of the talking. This is definitely something I’ve found with chronic pain and mental illness – it’s easier to laugh from the outside than talk from the inside. I follow a lot of other Chronic Illness warriors on social media, Instagram in particular. Their sharing of memes and funny pictures, as well as inspiring quotes, keeps me going on rough days. I share them with fellow pain sufferer friends. As well as telling 1000 words, they open up conversation lines in ways that we normally can’t. So I’ve grouped together a few to give as examples of memes that describe life with chronic pain. If you’re a sufferer, or love someone who is, then you may relate.
The word “Pacing” has come to mean something different to me since being introduced to the Chronic Pain community. Prior to that, I had linked it very much so with parenting – pacing up and down corridors waiting for news, pacing up and down the house with a crying infant. In the chronic pain/illness world however, pacing is a coping strategy, basically “to pace yourself”. It’s a skill that can be quite difficult to get the hang of. In essence, you find out what your limit is, and then figure out your schedule to what you can do.
And then parenting comes along. Boom. My toddler DOES NOT CARE for pacing. Parenting and pacing are not the easiest of combinations to master.